Fibromyalgia ?'s

[RAS6]

OK, now that my periods are under control (less Ic flares) and my breast tumor came back benign I am trying to tackle all the mystery pain my body is experiencing.
I hope I don't sound like a hyprochondriac, but I am thinking I may have Fibromyalgia and am not sure where to start. I am already on 1800 mgs of Neurontin a day as well as Vicadin and Percocet as PRN's and still the pain at night especially is overwhelming.
I started having lower back pain shortly after my IC daignosis. Then it spread to my upper back. I have shooting pain on both side of my spine, near my kidneys (and yes, a CT scan came back fine) I have been exhausted ever since having my first child, but am so tired now it is ridiculous!! I thought it was lack of sleep at night or meds, but both of those issues are basically under control now and I am still exhausted. Also, I hurt every morning and every evening from my head to my toes. My elbow, left hip pain, and neck pain are the worst!!
I am so sensitive to touch and bumping into things too. Just a playful poke from my husband is terribly painful.
I have read up on Fibromyalgia and see alot of similarities.
But where do I start? I just switched GP's and haven't seen my new one yet. I do not need refferals, but am not sure if I should talk to my IC specialist or just set up an appointment with a new Doc. And should I try a pain specialist or a Rheumatologist?
Thanks for the help.. It seems like one medical issue calms down, another one pops up!! GRRRR..........:cussing:

[leelee88]

Rach,
I feel the same way.. Sometimes when my husband touches me or I bump into something it hurts or has a burning feeling and I am always tired.. And I have noticed to that the weather plays a big part in the way I feel..
But I don't think there is much they can do for Fibro, but maybe I am wrong.. let me know what you find out..:)

[RAS6]

Ronda, I think you may be right. I heard from a friend with Fibromyalgia that Lyrica and Neurontin are the staple pain meds, but she has had significant relief from hydro therapy and hot stone massage (she gets both at a pain clinic) I doubt my awful insurance would cover either. Still, I want to get an answer. I am having that "fuzzy" brain affect too. I forget what I am doing in a store, drive past my own driveway, forget whether I locked all the doors at work adn ahve to go back, get confused when really stressed, etc. I just feel like I need to take care of this all now and not let it go any longer. I let my IC symptoms go too long as it was!!
I'm sorry you feel that way too.
Yes, weather is affecting me, especially here in freezing cold Western NY! I have arthritis and tendinitis and cold weather makes that worse too. But my aches are worse now that the temps have dropped!! Wait until the Buffalo snow starts.....We need to move!
I'll let you know what I find out.

[mrsaridings]

You know, I wonder if sometimes I have fibromyalgia. I too get a lot of my worst pains with weather, mostly when I get cold or it is colder outside. I also get very very tired. Scratch that. Exhausted. I can get a full night's sleep a break from cleaning the house or watching the kids, and it is like I have been working my butt off all day. My pain is usually either in my wrists or elbows, or radiating up and down my legs als and ankles all day. I cannot walk the pain is so bad. It comes and goes, but I have started keeping a pain diary. I started in the middle of last month, and so far I have had the pain seven times. I actually have it today as well. I have been in pain since 2:00 am. I have slept almost all day, the pain eases with some relaxing, but as soon as I start to get up and move around I am aching again. I thought I was the only one who thought I sounded whiny or like a hypocondraic. I apologize to my husband constantly because I am always complaining of pain or not helping him with the girls, cleaning, or cooking. I am going to go to the dr about what mine might be after a month of keeping a diary. Let me know what your dr says and what all your symptoms are.

[tigger_gal]

living with fibro myself, the pain is overwhelming at times. You really just want tosit and cry. Then everything bothers you beause you are in pain and no one wants to hear that. Its especially hard with 2 little ones and lets not forget 3 dogs 11 pups and a husband!!! I take 4, 10 mg of flexeril a day, and still suffer from pain. I also go and get cortizone shots every 6 to 8 months, and have toargue with the insurance compay it was not for an injury. Like you I am always exhausted. getting comfortable enough to sleep has become next to impossible. my biggest pains are my lower back, shoulders and arms, my hips and my legs from my knee to my toes. I like Ronda can't stand to be touched because of the pain, but my babies don't understand that. some days its just an effort to get dressed or my hair, and lift my arms up.
Sending you out big hugs Rachel, ask yoour doc about fibro, and maybe go to a rheumitologist.








l

[RAS6]

Tig, I am so sorry your pain gets so bad!! You are in my thoughts alot. I can't imagine doing all you do with all your pain and health issues. You are so amazing to me!!

Rhonda, I hope you get answers soon. You have been going through ALOT of stress and that could be making everything flare.

Mrsaridings, Thanks for posting! I don't think we have talked before. I am so sorry about your pain. Keeping a pain journal is a great idea. I did that when I was trying to determine my IC flare factors. It was crucial in helping me realize the pain was REAL and helped my IC doctor know what meds to try. I am to the point now that it is cold here in NY that I hurt EVERY SINGLE DAY all over, but it is worse at night. I can't get comfortable. Sitting, lying down, standing, everythings is horrible. I wrapped up in a blanket last night and just cried. I would live in a hot bath if it was possible!! So I do think cold is a factor. My Mom is buying me a nice big heating pad since mine croaked and I am pricing electric blankets too. I'll let you now what happens for me, but you may want to talk to your Doctor and see what they say in the mean time. Don't wait for me!! I hope you feel better soon!!

I am also depressed, and unfortunately my husband and I are fighting alot again as the house gets messy, so that could be making everything worse. I hope my new therapist will help me get somewhere! The last one just wanted me to give a play by play of what happens in my life. I have specific things I wanted to work on and she ignored those. I felt like I was paying way too much $ to have a sounding board when I wanted imagery, activities, workbooks, things to try, etc. Maybe being a Psych major and working in that field makes me a tough patient....we'll see!! He sounds nice and the first therapist my insurance covered recomended him as she isn't taking new patients. The problem is that my husband is getting jealous and I don't know why. He is like that about my male Ob/Gyn and even my IC specialist who is old enough to be my grandpa!! MEN!! GRRRRR............

I have a good friend with firbo that gets as bad as what tigger described. She gets nerve blocks, cortizone shots, and still little relief. Her biggest help lately has been hydro therapy at a pain clinic. She talked to me for awhile last week and when I started describing my pain, how it felt and where it was (joints, left hip, both sides of my spine, at the base of my neck) along with the fatigue and "fuzzy" brain (I told her how I keep passing my driveway after work, forget my bank password whenb the store is crowded, spell things wrong, forget people's names, etc) she got up and hugged me and had tears in her eyes. She said it sounded like her fibro when she first got diagnosed. She has gotten worse, and urged me to get some help soon. (this was after I posted here) She is giving me the name of her Rheumatologist who works with a pain specialist. They are in the same office and send patients back and forth. She was upset b/c she is like a second Mom to me. I am friends with her 3 daughters and my kids call her grandma. Her youngest daughter who I went to school with has lupus and it breaks her heart to see another one of "her girls" sick and in pain. She said I may want to get a massage or see a chiropractor in the mean time. Both cost too much $ so we'll see.
Sorry so long!! I'll let you know what happens when I get to the Rheumotologist.

[curlycue]

I was diagnosed with Fibro in 8/07 and I know I have been suffering with pain for about 2 years, I was really hoping it was something simple. I guess with IC and Fibro nothing is easy. I am taking Lyrica and Skelatin (spelling not correct) Good luck. :pray: :pray: :pray: :pray: :pray:

[RAS6]

Thanks Ruth. I am sorry for your diagnosis. I hope the meds you are on are helping now. I am on Neurontin which I thought was similar to Lyrica. I may switch if my Doctors recommended that. Neurontin is very in-expensive though. I did talk to my Uro's NP and she gave me the name of the rheumotologst they use, so I may just see him.
Thanks for the well wishes and good luck to you.

[tigger_gal]

((((((((((((rachel)))))))))))))

[curlycue]

Your Welcome. Good Luck. I have a friend that I told I might have Fibro, she said to me well Ruth if that what it is find out and get some meds and see what happens? I thought if only it was that easy. I just hope IC does not bring any more illnesses. I really think IC and Fibro are cousins.

[BrittanysDance]

DIAGNOSIS:

A rhumy or neurologist is who can diagnose and/or rule out fibromyaliga. They do specific tests for trigger points, the standard test for fibro is 11 out of 18 specific points for diagnosis, with most having the same point on the other side of your body (mimic site points, i.e., left side of neck, right side of neck), but not always. The doctors must rule out many other diseases prior to a diagnosis of fibro however, because many other things can mimic fibromyalgia (MS being one of them), which is why the process of elimination is the only real diagnostic tool for fibro. You may have to go through xrays, CT Scans, MRI's, tons of blood work and even more meds - the works before getting an official diagnosis (which is a GOOD thing). Also you should have a CMP (complete metabolic panel) blood draw along with specialized tests done to ensure your magnesium and potassium are within normal limits for YOU (not only what the "chart" says that drs use, but what is normal for YOUR body) - if these 2 things are off either too high or too low, it can wreak havoc on your body and mimic fibro, as well as have your thyroid tested - it too can wreak havoc on your body if it is off even a little bit and can mimic fibromyalgia to an exact.

Fibro patients also tend to have many more sensitivies than others (meds, foods, light, smells, etc). Also they tend to have chronic headaches or can develop migraines and chronic fatigue. Its also good to be checked to see if you are a carrier of Epstien Barr virus as many patients with fibro are carriers and do not know it. The fatigue can cycle - my husband and I go through 2 and 3 months where we cycle of just down right exhaustion and then there are months at a time where, while tired, we are not exhausted to the point of feeling just beat down, we actually can function a little better than not.

THINGS THAT HELP:

Excercise does help SOME people with fibro but not ALL people. It depends on the degree of fibro that you have. In myself and my husband, it does not help at all - it actually makes it worse. Light stretching, like over one of those large exercise balls or Pilates or Tia-chi does help a little bit, but only after your muscles are warmed up, thats about all I can handle personally. Any change in weather (temp, barometric pressure, etc) absolutely KILLS us. I am more sensitive to it than he is (plus I have Raynauds on top of it, not good for cold). HEAT is a key player for fibro - I love love love my bathtub and many times a day must sit in it just to warm up my body for one (having Raynauds...) and 2. to relax my body from fibro. Have been on more meds than I care to admit (and more reactions than I'd like to go into) for fibro and just chronic pain from all the diseases I have, not just from IC and fibro but others as well.

MEDS:

There are alot of meds that are helpful to fibro. Muscle relaxers are great while pain pills dont really help all that much unfortunately because its a muscle/nerve situation. The one med I do take for my fibro that helps with that intense burning in the muscles is Zanaflex. It helps alot but it also knocks me on my butt:rolleyes: - not a bad thing given I dont sleep much. I've had trigger point injections which didnt help (and ususally do not help in fibro patients) because its not a bone thing - its a muscle/tissue disease and nerve disorder - so cortisone really doesnt help that much - UNLESS you have REALLY REALLY high levels of inflammation (which can be determined by doing a SED Rate blood test). Then oral steriods for a brief period of time may help, but not usually. Been there and done it - (also I have arthritis and Lupus) and steriods did not help my fibromyalgia in either instance while treating my other 2 conditions. There are other meds that you can take that help (such as Neurontin or Gabatril) that help with the misfiring of the nerve endings because patients with fibro tend to have wayyyyyyy more sensitive skin than most - also we also tend to not heal so quickly with dental work or if you get porcelain fillings (make note of this ladies - its very very true when they use porcelain fillings, hubby and I have had to have 3 fillings redone EACH due to issues and its due to having fibro per the ADA - never knew this until about a year ago).

Fibro may progress over time - both my husband and I have it severely now compared to what it was when first diagnosed and we have both progressed over the past 11 and 13 years we've had it, respectively. He had it first, then I got it a few years afterwards. I got it after I had my IC diagnosis along with all the other lovely things I have. Oh joy! :woohoo:

Thats about all the information I can provide based on myself living with and dealing with fibro for over 11 years now. Not every person that has fibro has it to the same degree however and what works for some may not work for others and vice versa.

I do hope you ladies get some relief soon...I apologize if this seems so very long, I just hope I can help answer questions you have asked or may have.

Lots of hugs,
Brittany

[Charisse]

There ARE things you can do for fibro so please see a dr! My GP suspected I had fibro and I decided to see a rheumatologist to confirm it. I had blood tests to rule out other diseases and he performed the "trigger point" test which was the test I needed to believe I had this. It's very simple and my dr just ran his fingertips in a tapping manner up my arms and as soon as he hit the area beneath my elbow I got VERY tender. He continued on up my arms, shoulders, neck, chest and all down my back, hips and legs and I had many tender points. I feel like anytime I'm touched with someone's fingertips that I am bruising. It's awful. I was diagnosed in November of '06 and started treatment immediately. It was a long road but I can say I'm definitely feeling a lot better. I take Ambien to correct my stage 4 sleep dysfunction that many fibro patients have, and that alone has helped my pain immensely. Once I got my sleep dysfunction fixed (which I didn't even know I had so don't assume you are getting the right kind of sleep until you try a sleep med) then I was able to increase my activity. I also use Ativan as a mild muscle relaxant since I can't tolerate the stronger ones like Flexiril. Elavil is also commonly used for both pain and sleep but I can't take that either. My exercise level is still not where I'd like it to be but I have had to work hard at finding a happy medium. If I do even 5 mins too much I will end up flaring but walking slowly just 20 mins a day (I had to build up to this) and occassional use of 2 lb weights for just 5 mins really helps. The thing is it's sometimes too much to sit in a chair at work all day AND then go home and exercise. I found when we were in Europe and I was walking a lot that I felt better than I ever have in my life and normally I have a low exercise tolerance but I think this is because I work full-time on top of trying to exercise. Fibro is a huge balancing act. Everyday I have different needs and I have meds to take for them and I have to adjust my activities appropriately. I cannot push myself to get many errands and chores done in one day and I have to take frequent breaks at work to get up and walk, stretch. IC also complicates things because it has it's own set of needs! I could go on and on but you've gotten a lot of great advice already. My rheumatologist thinks my fibro is just aggravating the IC and that IC may even be part of fibro. He said the better control I can get over my fibro, the less my IC should bother me.

[Maidy]

Brittany,

Thanks for that informative post. I've had IC for a few years now and have periods of remission. However, I've noticed that I have times when my PMS is really bad and it never was before. I've always associated my aches and pains to the IC or PMS. When I'm in an IC flare, I tend to get lots of aches and pains so that it feels like I have the flu or something. I even thought maybe I had early arthritis or something. For some reason, I never thought I could have fibro. I always thought of it as a facial thing and always extremely painful.

After watching Oprah last night and Dr. Oz, a lightbulb clicked in my brain today. I've checked the symptoms and I have quite a lot of them. I have a very high pain tolerance, so I've always just "lived" with feeling bad and being tired, etc. However, now I think I could possibly have a mild case of it. It would explain a lot.

What do you suggest for taking the first step? Should I check with my primary care physician first? (Sigh. I can't stand them, but can't seem to find a good one on my insurance.) Or should I mention something to my GYN on my next visit which is in Jan.?

I can't just see a neuro or rheumo without getting a referral. But what do you say to your Primary care? Uh, hello, I think I have fibromyalgia, can you help me? :lmao:

I know this sounds riddiculous, but with my IC, that's the first time I encountered any health problems in my life. It was the first time I had ever taken antibiotics too. I've always seen my GYN yearly, but have only seen a primary care doctor every few years for a routine check because I never get that sick.

Any advice on what to say or what to ask would be great. Thanks! :bow:

[curlycue]

Thank you Jesus that there are women out there helping women. Thank you ladies and for all the wonderful information that you guys provide us with on a day to day hour to hour baisis. Gracias Amigas. I guess minute to minute as well.

[BrittanysDance]

Maidy,

I'm sorry you arent feeling well (big hug, but gently) :) I know that achy awful feeling - some days you just dont want to be touched at all.

Yes - start with your primary and go from there since you need a referral. Even if you didnt need a referral, I'd still start with him/her (I did even though I didnt need a referral) because they are the ones that see you for "every day run-of-the-mill things" when you are ill, so what is in your chart will help the rhumy or neuro better. Some family doctors can help to diagnose fibro as well - my family doctor happened to get diagnosed with it last year (bad for him but good for me...I'll explain). He never believed me that I hurt as bad as I did..UNTIL...he got it! NOW he believes me and NOW he believes in narcotic pain control whereas before he did not, even though narcotics really dont help fibro, but for a chronic pain patient that has a doctor who does not (or didnt) believe in using them until he got sick - this is a huge victory! Its one of those "careful what you wish for" things because for years I kept telling him "one of these days you're going to pray to God you never find out what its like to hurt every day of your life, like I do...". Uhm....well....I kind of feel guilty now..but.....at least now he knows what just ONE of my conditions feels like and he doesnt have it nearly as bad as I do. Count your blessings doc :angel: Awful for me to feel happy about that isnt it? But in some small way...I do. (Oh man...I feel shameful for feeling that way) :rolleyes:

In the meantime...try some of the suggestions above....soaking in the tub, a heating pad, a hot water bottle...those little thermal heat things you can buy in the store or even those things you warm in the microwave (they have beads or something in them that warm up...almost like corn husks). THOSE are GREAT and you can sleep with them vs. a heating pad and put them on specific areas of your body - work great for the lower back area.

Keep us posted on how it goes and dont take no for an answer (of course, do so tactfully) :smile tee

Hugs,
Brittany

[Maidy]

Thanks Brittany! I really appreciate the advice and the encouragement.

I've been very fortunate in my years with IC so far. I had about a 6 month time period this last spring and summer where I felt almost normal again. For some reason, I always seem to flare and have problems in the Fall though. I don't know if it's the stress of the kids starting back to school, the holidays, etc. But I seem to follow a pattern there.

Anyway, although I do flare and not feel well, it's more frustrating and tiring than anything else. I've been working out on an elliptical machine a friend gave me since the end of August. It's going really welll and I've lost 8 lbs doing that. That may not sound like much, but I'm down to 119 which is a more normal weight for me than the 127 was so I'm happy with it. It's the one time of day that I feel really good. Must be the endorphins. Even with the pain in the rest of my body, I somehow seem to be able to do the machine. Even when walking is painful, I can do it. So that is a blessing.

I also seem to be able to handle the discomfort and pain pretty well. I still work a part-time job and keep up with the kids as best as I can. I'm lucky that it isn't excruciating or debillitating for me. So, maybe it isn't fibro from that standpoint. But all the other symptoms I've read for fibro seem to really matchup, except for the degree of pain. The specialist (URO) that I saw at UCSF did address the pain in my legs. He said it made sense as the nerves in my body are responding to the pain from the IC flare. I may not feel the bladder pain, but the nerves in my body are feeling the pain instead. Not exactly sure how that works or what he meant by that. Unfortunately I was only authorized to see him that one time.

But, I'm not giving up. I'm going to eventually conquer this thing and be completely normal again. I know it. Then I'm going to put my story in the success stories part of this forum! Until then, I just keep trudging along. LOL!

So glad to have met you. I skim the forum from time to time, but really need to read and respond more. :)

[curlycue]

:grouphug::grouphug:

[RAS6]

It seems like every time I get on this site I get another reminder of how wonderful all you ladies are!! I am sorry I didn't respond for so long, I had a rough past week and my husband took over the computer alot too :)
But I want to thank those of you who shared your stories and ideas with those of us struggling with these horrible symptoms.
A special thanks to Brittany for letting us know there are options and giving such detailed answers!
Thanks to Charisse too for sharing all your knowledge!
:angel:

As for me, I called my Uro and talked to my NP there. I am having incontinence non-stop now and she is concerned about that. We are trying new meds untill I see her in December. She also said my pain symptoms and all the other things I described seem to be beyond IC pain in her opinion and gave me the name of a Rheumotologist they work with. He seems to specialize in allergies (now I am really confused!!), so I am trying to get an appointment with my friend's Rheumotologist instead (she specializes in Rheumatoid artheritis, Lupus, MS, Fibro, and CFS). She is on vacation, so hopefully I will get ahold of the office staff soon. The pain is almost unbearable at night and first thing in the morning. I have had to take hot baths the past few nights b/c I cannot get comfortable anywhere else!! Last night my husband just rubbed my back while I cried myself to sleep. I thought pelvic pain was horrible, now I am dealing with pain all over as well and it is EXHAUSTING physically and emotionally!!
My Mom is a recovering alcohalic and keeps reminding me that "one day at a time" can apply to every one, so that is what I keep thinking about. I just have to get through today, tomorrow may be better.....
I just wish I didn't have to work! That's a whole different thread!LOL!

For all of you going through this too I am thinking about you and praying we will all get answers and relief soon! Hang in there!!
:pray:

[Maidy]

Hey Rachel,

Just a thought, and probably not your problem, but have you ever had your potassium level tested?

When I'm having IC flares with frequent trips to the bathroom, I tend to lose potassium and when my levels go down, it's excruciating. I have pain everywhere and can't stand it. So, I call my doctor, get him to order a blood test and they see it's low, prescribe high doses of potassium and that seems to help a whole bunch for me.

Probably not what's happening in your case, but it just popped in my head, so I thought I'd mention it. I know that I take a potassium supplement now when I'm flaring. When you pee a lot, you tend to flush vitamins out of your body.

Anyway, ((((gentle hugs)))) I hope it gets better soon for you. :pray:

-Maidy

[RAS6]

Thanks Maidy. Actually patassium testing is one of the first things the Rheumotologist should be testing me for, at least according to my friend with Fibromyalgia and my sister's friend who has MS. And yes, I urinate ALOT, sometimes up to 40 times on a really bad day. I can't take vitamis b/c they iritate my bladder, and I eat only pears and blueberries as far as fruit goes, so I may be short on potassium. I hope it is that simple, but am suspecting it's more than that. The pain is unexplainable: it comes from no where and is making EVERYTHING hard to do!

I saw that you said you work part time with kids. I do too! What do you do? I run support groups for kids with mental illness and their siblings while their parents attend a support group as well. That job is getting too stressful though; I have to drive hours away (I get mileage but still too much trouble) I love the kids, but the aggressive behavioral issues are wearing me out. Plus we are short staffed and the agency is hurting financially, so I am stuck working alone alot for two hours with 10 kids or so and with al my pain it has been very difficult. I am trying to get into a school, I am a certified teaching assistant. I am still wating to hear from a school I interviewed at, andI just applied for a part time job at a preschool, hoping that will be easier than what I am doing now!! So many people have brought up going on disibility, but I am not ready for that yet.
Anyways, thanks for your post and is was nice to talk to you!!

[curlycue]

BrittnaysDance............ You have great ideas. Thanks I neve thought about a hot water bottle, or the warm patches. :)

[kuntrygurl78]

I just wanted to say that I sympathize with all of you. My mom and her sister both have fibro. My mom is just now finally opening up to me about how much pain Im in. I guess its because I share with her all my IC pain stuff. I think now she understands that I can relate some.

I know my mom is on Darvocet during the day. She said its just enough medicine to take the edge off so that she can work. I also know heat helps her. She takes a bath once or twice a day. She also bought a tanning bed, and she likes that. There was also a lady in town who offered to do a massage on her (the lady was in training). My mom loved it. The lady wanted to practice gently on someone with fibro. The relief was only a few days, but she did like it.

I hope all of you guys feel better soon!:hi:

[irishnan3]

Hey Everybody
Dealing with Fibromyalgia on a daily basis is one of the hardest things I have ever had to deal with. I also have 2 herniated disc's and a fusion in my neck. I have used Neurontin and every other medication out there and nothing has helped. I have to take Wellbutrin XL everyday which has helped me deal with my health problems and Vicodien to deal with the pain and that only takes the edge off of my body pain and my IC pain.
It is very frustrating when just a little poke to your body feels like someone hit you with a ton of bricks (no kidding) I know my hubby thinks I over-react sometimes when he's kidding around with me but I truly hurt at the smallest grab or tickle. (It S---KS):cussing: I have been dealing with the Fibro for a long time now so if anyone needs to talk you can pm me any time.

[Maidy]

Oh Rachel. I hope it's that simple for you too. (((gentle hugs))) Life would be so much easier if they knew more about IC and Fibro and such wouldn't it? Sometimes I wish they could say, okay, do x, y and z and you'll be all better.

I work part-time as a bookkeeper for a mobility company. They sell wheelchair vans and install wheelchair lifts in vehicles, etc. The people I work for are so wonderful and they allow me to work around my kid's school schedule. The nice thing about my trade is that if my IC ever got so bad that I couldn't work outside the home, I could do it from home and just start my own business. But for now, I like getting out. Also, there is a bathroom in my office so that's very convenient for me. :smile tee

I have two girls, aged 13 and 10. I can't believe they are that old already. My oldest is in 8th grade and looking at high schools. My younger daughter is in 5th grade. They are a wonderful help to me and understand to some degree about my IC. I try not to talk too much about it, and to make it seem like the most normal thing in the world to have though as they get really worried about me sometimes. Especially when I was first going through the symptoms before I was diagnosed. It's been a few years now and unfortunately a few vacations have been miserable because of the IC, but this last year it's been in remission for about 6 months until this last flare. So, we had some nice vacations and a good summer together.

I can't imagine driving hours away and having the stressful job that you have though. I'm exhausted just helping in the classroom or driving on a field trip! I did learn through the IC how to finally say no to stuff though. Before my diagnosis, I worked part-time, ran an ongoing scrip fundraiser at the school, sold Avon, carted the kids to all their activities, watched the baton ladies kids during class, and attended dance class 3 nights a week. Oh, and ran the RCIA prayer partner program at our church.

I stopped all that and now I still volunteer at the school, but in a much more limited capacity, only work the one job, still do the RCIA thing, stopped dance class, but am exercising at home 3-4 days a week, and still cart kids all over kingdom come, but have gotten better at saying no to people. LOL!

[cartervj]

Now that the cold weather is here, Fibro sufferers will suffer. The cold sets into your bones and makes it so much more worse. I believe I have always had fibro since I was a child. It is now diagnosed. Hot baths with pain pills work. I sometimes hate my husband because he doesnt understand. He asks a lot from me when I can hardly stand up. Even my kids (I have four) act as if they dont know why I am in bed and do not feel good. When they ask me what is wrong, I just say "I'm fine". Then why are you in bed? They demand so much of my time, I dont know how I make it. They are all so inconsiderate and once I am stressed, one of two things will happen. My IBS will flare or my IC. I cant take it. My pain doctor is going to give me epidural injections to my low back on Monday. He says that it will help with the nerve pain I am experiencing. I am not sure if it will help with my shoulders. But I suffer there too. Sometimes I cant raise my arm (right or left) for months. Nothing works. I did, however read on the fibro website that diet may have a lot to do with it. But, like all things, I think it depends upon the person. Is it all in my mind? Sometimes I think that I am crazy and then BOOM, the pain will really hit. I dont understand. My husband says, "your getting old, what's wrong with you?" I REALLY HATE HIM! I am 37 and yes, I feel as though I am 60 sometimes. I am sorry that I am not an active young 37, but what do I do? (crying). I feel bad for him and the kids that I cant do most things. I just want to crawl up somewhere and hide from them all sometimes. :( I hope you feel better.

[irishnan3]

Cartarvj
Sounds like you could really use a friend to talk with. I know what you go through. It is hard when loved ones don't understand. Have you tried explaining to your kids and your husband how the pain hurts you. Are your kids old enogh to understand? I know when I am under with my Fibro or IC or any of the other crap I deal with it is hard for me to understand how my family feels when I'm like that. It happens more then it don't so it seems that I am always sick with something,,,,you feel like they think you are a hypo. or something. It is hard but we just have to keep making them aware of what we deal with and hopefully they will help us get by. My son and his wife decided to do Thanksgiving at their home which is right next to mine and I was so happy to hear it. They said they will do most but of course they want me to cook their favorites. lol but we will get by. I hope you feel a bit better for the holidays, they are hard enogh when your well to deal with. Good Luck and have a Wonderful Thanksgiving.

[cartervj]

Cartarvj
Sounds like you could really use a friend to talk with. I know what you go through. It is hard when loved ones don't understand. Have you tried explaining to your kids and your husband how the pain hurts you. Are your kids old enogh to understand? I know when I am under with my Fibro or IC or any of the other crap I deal with it is hard for me to understand how my family feels when I'm like that. It happens more then it don't so it seems that I am always sick with something,,,,you feel like they think you are a hypo. or something. It is hard but we just have to keep making them aware of what we deal with and hopefully they will help us get by. My son and his wife decided to do Thanksgiving at their home which is right next to mine and I was so happy to hear it. They said they will do most but of course they want me to cook their favorites. lol but we will get by. I hope you feel a bit better for the holidays, they are hard enogh when your well to deal with. Good Luck and have a Wonderful Thanksgiving.

I am really under attack today. I was up in the bathroom all night b/c of IBS. This morning my left side started attacking. I have to clean up for my families arrival for Thanksgiving. I also have to steam the carpets (my husband was supposed to do them for me on Sat., but did not) but I know that I cant. My shoulders and neck feel like there are weights on them holding them down, while I cant even stand or walk because of the pain on my left side. I called my husband and told him I just didnt think that I could do the floors. He said, "well, do everything else". I told him that I coulndt do anything at this point and my pain killers (Ultram) is just not working. He got upset and stated that now he has to come home and do everything. Hmm? I think that is the same thing I do when I get home from work..EVERYTHING! Now I am just sitting on the edge of my bed and cleaning off my dresser, its sit down work, so it isnt too bad..until I accidentally move the wrong way. I want to lay down and go to sleep, but I have so much to do. I dont want to take the stronger pain pills b/c I will really go to sleep. My daughter is on her way home from school, so hopefully she wont act like I am just acting and really do something for me. I'm so exhausted. Thanks for listening.

[irishnan3]

I know it is hard. Don't do it if you are that bad. Everything will work out. If the family has to chip in so be it. If they help out and you get the rest and help you need the pain may pass faster then if you push yourself to the limit. Just take the meds you need and sleep if that is what happens. Thinking of you and saying prayers for you to feel better.:angel:

[BrittanysDance]

cartervj,

I'm sorry you're having such a hard time - but you must slow down. If YOU dont take care of you, who will? Is family coming to see you or your house? :rolleyes: SO WHAT if the carpets arent "spic and span" - they're just going to get more dirty with company right? So clean them after people leave if and WHEN you feel like it, not when someone else tells you to.

If your house isnt clean enough for your husbands taste or liking - then tell him to do it, period. The first thing you need to stop doing is telling your family that "I'm fine" - because its obvious that you are not "fine". If you tell them that - they will believe that. Sort of like telling a man "Nothings wrong" when they ask you "whats wrong?" As women - WE know that "Nothing" means "YES There is something wrong!" But MEN dont get that now do they :loco: They think "well..you said Nothing so I assumed nothing was wrong!" Or the proverbial "I'm fine" that we so often do....when we are clearly NOT fine. We cannot send mixed messages and expect our family members to know that we are, in fact, not okay - when we say "I'm fine."

Leave the house cleaning...do what you can...and if company is coming to inspect your house, then tell them "Sorry...I'm ill and havent been feeling well, so deal with it. Happy Thanksgiving!" :smile tee

Are you on any meds for your IBS? There are anti-spasmodics out there (NuLev is a great one, it melts under your tongue and works in about 20 mins - another is Donatal and is stronger). I use both -perhaps you should talk to your doctor about these.

I do hope you feel better soon - and take the time to take care of YOU!

Hugs,
Brittany

[irishnan3]

Brittney couldn't have said it any better. STOP and take CARE of YOU!

[Berkshire Road]

Hey, I guess I missed this thread when it first started. I have fibro also. I thought both BrittanysDance and Charisse did great jobs of explaining some of the treatment options, but would just like to add that many people get some relief from dietary changes (for example, a higher protein diet is often recommended for fibro patients) and from certain kinds of supplements. I've been taking glucosamine/msm for my IC and arthritis, but I honestly think it's helping my fibro too. There are a lot of other supplements that you can research, and if you want to, try them out.

As the cold weather sets in, the best thing for me is heating pads. Now you can buy microwaveable heating pads just for the hands and feet, that wrap around your shoulders -- they come in all shapes and sizes and can provide tremendous, albiet temporary, relief. So, that might be something to ask Santa for! When you have to be out, boot warmers and glove warmers can help a lot, and the ThermaCare people have just come out with heat wraps for the knees. One of the worst things a fibro patient can do is to tense up around the pain, which is part of the reason that muscle relaxers are often part of the therapy. Heat helps with this also, as does relaxation therapy. You can get a tape or a video about relaxation therapy almost anywhere these days, some are better than others, but I find the techniques I've learned often allow me to get to sleep on nights when it wouldn't otherwise have happened.

My sympathies to all of you who are dealing with this rotten condition. I hope that all of you are able to find some relief soon!

[curlycue]

Great Ideas Thanks

[curlycue]

wow I thought I was the only one that went through stuff like this? I know exactly what you are taking about. Good Luck.

[cartervj]

Thank you for your advice. It wont be taken lightly. Anyway, Thanksgiving was really, really nice. Everything was just great. The family chipped in a lot when they got here, which made it easier on me. Happy Thanksgiving to you all!!

[cartervj]

Hello All - I just wanted you all to know that I had my first set of epidural injections to my low back on Monday for the treatment of fibromyalgia. No more than 5 minutes after the injections did I feel immediate relief. I mean, no pain at all whatsoever! Not even in my butt cheaks!! The pain just disappeared. I used this treatment as an alternative to the Lyrica because of the side effects of weight gain. I find that the heavier I am, the harder it is to cope. Anywho, I just wanted to put this out there as maybe a means of treatment for anyone suffereing from the effects of Fibromyalgia. Maybe, if you are being treated by a pain physician, it could be mentioned as a form of treatment. I have to go back in two months for another. It took all of five minutes to do and it was not at all painful.

[irishnan3]

Happy to hear you got relief from your treatments. I am trying to find a Pain management doc. who will treat me for my IC pain and neck (disc trouble) fibromyalgia problem. It has been hard. I have been turned down by two drs. already because of the IC????

[cartervj]

Happy to hear you got relief from your treatments. I am trying to find a Pain management doc. who will treat me for my IC pain and neck (disc trouble) fibromyalgia problem. It has been hard. I have been turned down by two drs. already because of the IC????

I cannot believe that! IC is a painful disease and a pain doctor should be more than willing to take care of you. First off, IC has many diseases relating to it, so it isnt easy to go see a urologist one week, a rheumotolgist the next, the dentist, the gastroenterologist...and so on. Where do you live? Are you a member of the American Pain Foundation? If not, you can google it. It is very informative about pain doctors you can find in your area. I actually had a doctor get tired of me complaining and sent me to pain management. I hate him to this day. Some doctors are so insensitive, I wonder how they keep their licenses. Good luck to you and keep us informed. Turned down by doctors....I CANNOT BELIEVE THAT!!!! :rant:

[irishnan3]

No I'm not aware of the American Pain website. I'm checking it out write now. It has been crazy, I have filled out medical histories for these doctors and I have gotten nowhere. They told me they can't handle IC patients???? So why didn't they say that before all the paperwork. I was told they like to evaluate it on paper then make a dicision?? So they're saying they take who they want to take and no one else. rime selection if you ask me....I haven't heard from the last doctor yet. He did seem caring so I'm hoping. Keep me in your prayers.

[Charisse]

Can you explain more how these epidural injections work? I have never heard of anyone complain about pain in their butt before except for you (and me!). I have the same problem. It's my neck, back and butt muscles that just ache and kill.

[curlycue]

Cartevj.............. You get these injections from a Pain doctor does that mean a anestizioligist(cant spell) what kind of injections are they? I would love to find a doctor like that out here in Riverside CA. Any info would be great.

[cartervj]

Cartevj.............. You get these injections from a Pain doctor does that mean a anestizioligist(cant spell) what kind of injections are they? I would love to find a doctor like that out here in Riverside CA. Any info would be great.

I live in MD. I see a doctor out of Johns Hopkins at the Blaustein Pain Management Clinic. I had bursitis of the hip; they gave me injections for that; I just had the epidural injections and they worked. They also offer physical therapy, but my doctor has not asked me about that; and right now, I do not care because I cannot afford it. The anesthesiologist did not give me the shots, the doctors themselves did it. They use a camera to look inside of you at the time of the injections so they know where they are sticking you. They will do anything to you that might help. They do not want to see you on pain meds. I am limited on the meds that I take. I was on Nortriptylene, but it made me gain weight, so I finished the bottle and took no more. The Lyrica was too expensive, so I never started; but knowing that it makes you gain weight, I wouldnt want to take it anyway. These doctors do not know.. once we gain weight, it makes the situation worse. I have four kids and have had a c-section and two surgeries. I cannot even feel my belly down there. They are supposed to be operating on me in February. They do not even have to put me to sleep to cut my stomach open because I wont feel it anyway. They are going to put me to sleep, but, you know what I mean. Find a good PAIN MANAGEMENT doctor. Strictly to help you manage your pain. It is recommended that you still visit your own doctors regularly (urologist, physical therapist, rheumotologist..etc), but with pain management included, it can really help you to maneuver.

[cartervj]

Can you explain more how these epidural injections work? I have never heard of anyone complain about pain in their butt before except for you (and me!). I have the same problem. It's my neck, back and butt muscles that just ache and kill.

The doctor said that the injections are made to the certain points in the back that deal strictly with the nerves. He said that by injecting, it can help with pelvic pain and the other issues. They actually stick me with a sharp stick (like a toothpick) throughout my legs and arms, to see just exactly where I am sensitive and insensitive. I was amazed that in some areas, I could not feel anything, but a dull stick, while in some areas, it felt like I was getting stuck with a needle. That is how they assessed the fact that I had nerve damage and the treatment of these areas are through the spine. The injections really were not bad at all and I recommend them. I went to an IC meeting where there were a lot of women that felt pain in the buttocks (I hate when my husband pinches me there!). I really wish you can find someone to help you. What are the hospitals in your area, or maybe you can look for a hospital like Johns Hopkins. They are famous for trying their hardest to diagnose a patient with mysterious issues. They are always conducting research.

[Charisse]

I don't think we have any pain management drs in my area. I am currently treated by a rheumatologist but he doesn't prescribe me pain meds either because my pain has improved with taking birth control pills, Ativan and Ambien along with limiting myself on how much I do in one day. I did PT and that helped my fibro pain a lot but flared the IC so right now I just stick to walking and upper body work. Anything that works my legs or stomach flares me. Do these epidural injections work on the nerves in your bladder too or just the fibro pain? I was picturing you walking around with a catheter taped to your back and an IV pole (like women in labor who get epidurals!) so thanks for clarifying :)

[cartervj]

LOL!!! No, no poles or anything! I was in and out in an hour. Have you ever had bladder instillations? Well, if you have, it takes as long as that. I have no bladder pain either. I am doing well right now and am trying to lose weight; so, now I can actually work out, or walk a little further and climb stairs. I have been sitting in this chair for a while now, with the exceptance of getting up and going to the bathroom and I do not feel any pain in the butt, or back, or legs. I am tired however, and want to lay down and go to sleep, but I cannot seem to let go of the night. I have to keep going. I am about to go and pick up a pizza for the kids, because I do not feel like cooking. I will come back and lay down. My vertigo has been attacking me for the past few days and I have had to take my meclizine for the past couple of days; but on the other hand, I have been going to work and have not felt a thing. The thing that I think about IC is, you may suffer other diseases just as well as the IC, but, only one will take affect at one time. When there is an attack of mostly all, we are dead for the day. I will soon have to get up off my butt though, I am taking advantage because I feel really pain free so I dont know how to be. Right now, I believe that the anticipation of pain is so great, I do not know how to be without it, so I sit. I could be actually doing something worthwhile, but, I am tired. I dare not to say that I feel like I have RLS (restless leg syndrome), I cannot stay put long enough to rest. Its crazy.:confused:

[BrittanysDance]

Cartervj - did they do a fluroscopic injection? Its where they use an xray or CT scan to guide the injections in. I had this done on my spinal column in hopes that it would work to deaden the pain in my back and hips (sadly it didnt work for me) but it does work in many. They go in through the natural opening in your tail bone area. Sometimes they use this in combination with trigger point injections as well. Or did they just do a plain old epidural injection? There's a difference between the two and I'm curious to know which one you received.

I do hope this helps you and anyone else that has this procedure done. Its very neat to watch them do it on the machine if they let you watch - I watched mine (although it was more painful for me to have it done and I was in more pain following the procedure than prior to it) - but nevertheless it was really cool to watch them guide the scope and "thread" through my spine.

[curlycue]

Hi ...................... My one xmas wish is someone comes up with a procedure that does not involve pain, and we all get better. Mabey if everyone wishes the same thing it will come true.

[cartervj]

The doctor said epidural injections. They did go through my tailbone or the bottom of my spine. They wiped it clean, then they applied something to numb the area and then they stuck me a couple or few times, I am not sure which. They did have a machine that they used to guide their injections. I asked to be sedated because I had so much pain when they injected my hip for bursitis. I did feel so much better afterwards and still do. With the exception of my IBS acting up for the past week. I have been back and forth in the bathroom and my stomach is killing me. I actually had some pain in the injection site today and still counting, but I have had no leg pain, thigh pain or hip pain. I would definetly do it again. I will try and find out some better information next time.

[cartervj]

Ruth, I have the same wish. It is funny that we have to go through pain just to get rid of pain. The sad thing is that we are never really pain free no matter what. Now although my injections helped the bottom half of me, unfortunately, the top part of me (upper back, shoulders, neck) still hurts. At least I can walk.

[curlycue]

Cartevj............ are you taking anything for the fibro. I am on Lyrica and Skelaskin, it has helped some what. I guess something is better than nothing. I often wonder if we will live out our days with exrutating pain. I dont want to go out that way. I hope our wish comes true.

[cartervj]

Cartevj............ are you taking anything for the fibro. I am on Lyrica and Skelaskin, it has helped some what. I guess something is better than nothing. I often wonder if we will live out our days with exrutating pain. I dont want to go out that way. I hope our wish comes true.


They gave me Lyrica, but it was too expensive for me at that particular time. By the time I was able to get it, it had expired in the pharmacy. They gave me the epidural shots as the alternative and I have been going through a mess. I am too tired right now to explain..

[irishnan3]

cartervj
Are you ok???? You said you were in a Mess??? Are you in pain again?

[cartervj]

Yes, I am in pain again or shall I say that the epidural shots took care of the bottom, but not the top. Pain was moving up from my fingers to my hands, to my wrists up my arms until it reached my neck and shoulders. I ran out of work like I was on fire. I just got so nervous and anxious to get out of there. I couldnt take the pain, it was getting stronger and stronger. I have been in the bathroom all week long cramping and doubled over. Not with period cramps (I haven't had a period in 8 years), but strong other cramps that I just cannot describe. I wake up in the mornings with my bladder killing me as if I held on to all the urine I could all night long. I have missed two days of work since my episode and I slept all day on Wednesday. I got ready for work today and was really going to leave and go, but my head was pounding and when I got up to go after I did my hair, my head started spinning out of control:dizzy:. I had to take some meclizine and I sat in a chair and did not move. My head and shoulders were hurting me so bad. My friend brought me over some of her over-the-counter migraine pills, which took my headache away in 5 minutes flat. But, then I was just groggy from the meclizine and groggy from the pills she gave me, I just sat some more. I have to make it to work tomorrow, but I am so tired and I just feel worn out from all the days of pain draining me. My back is killing me from those stupid injections. I dont even know that I want them again in two months. I just feel like blah:(. I dont know what to do. My car note people keep calling me. I have been backed up on that since my emergency surgery in July. They are threatening to take my car, I am just a mess!!!!

[irishnan3]

I know a lot of people who have had the Epidural treatments and many of them had pain in the injection site for weeks to follow. I had an Epidural way back when for neck & back pain and refused to go for anymore. I didn't get much relief from it. I just don't like the idea of any needle going into my spine...... I see the pain management doc on Dec. 26th. I have tried so many things, I just hope he isn't going to want to try everything all over again. I already know what didn't work.
I hope you are feeling somewhat better.

[snowwoman]

Hello Everyone,

The last year has been full of pain. I am wondering if I have this disease. From my neck to my feet are full of pain. I definetly can feel the changes when the weather changes.

Thank you for this interesting topic and suggstions.

[curlycue]

I am sorry you ladies are going through this. Lyrica and skelaskin have really worked for me. Good Luck

[cartervj]

Ruth, has the Lyrica caused you any side effects that you might be worried about and if not now, how about at first? What about weight gain? I am trying to lose weight now and felt that the anti depressants worked, but I was gaining too much weight. How have they affected you?

[curlycue]

Yes, It has I have gained about 15 pounds, but I rather live with that than be in the pain I was in. Lyrica has really helped me.

[cartervj]

See, I cannot live with the weight gain. I dont know how much you weighed before or if you can afford to gain it, but I already weigh 195 lbs. and the shape that I have is big in the middle and smaller in the arms and legs department. When I was 225 lbs. my knees hurt all the time and I felt like I was being weighed down. I was depressed and sad and I hated myself. I joined a weight loss program and went down to 175. I felt better than I had in a long time. Physically and mentally. I can hardly lift myself up now, I do not need to gain ANYMORE weight. I am fat enough as it is. I am in the process of trying to lose it because when I was lighter, I felt that the pain was not as bad. I was on nortriptylene and was 183 lbs and went up to 199. I have lost 4 lbs. of that weight so far. The nortriptylene helped as I know the Lyrica will, but self conciously, I will have low self esteem, I would be depressed, I would feel ugly to my husband, I just couldnt handle being heavy and to get bigger would just make me want to kill myself. I would rather to just take pain killers or live with the pain before I put myself through that agony again.

[curlycue]

I weight about 178 and it does bother me, but the pain I was in last year with fibro is worth the 15 pounds I have put on. I am sorry. Good Luck

[irishnan3]

I understand your meaning on the weight gain. I to have to be very careful of what I take because of weight. I feel so much worse when I exceed my weight limits. I am only 4'11 so you can understand what I mean. Does this Fibro medication always cause weight gain?

[cartervj]

Ruth, 178!! I wish! How tall are you? I guess it depends. I am 5'9, so the fatter I get, I look like a big fat doofis. But, because I am tall, the 197 doesnt look so bad on me. Its just that, with four kids, to partial hysterectomies and the surgeries, all the weight that I gain is in my stomach. So I look really odd, with a big fat belly and wide hips and then I get skinnier as I go down. I look like an idiot. 15 more lbs to me would land me over the 200's and that puts me at obese, where doctors would say that is unhealthy. Plus the fact that diabetes runs in my family, I have to stay at a healthy weight. If I had to deal with one more disease I think I would lose my mind. I am trying to get down to your weight. Maybe if I could, I can began to take the meds. Well, I am glad that the meds are working for you and you can comfortably take them. Question? Do you think that you will continue to gain weight, or was it just because you had begun to take them and then it steadily eases itself off from the weight gain? I'm sorry for questioning you so much about the weight gain, but I am weighing my options (no pun intended) as to whether or not to take these meds or continue with the injections that didnt do a thing for me. By the way, I saw a hand doctor the other day about the pain I have been having in my wrists because I feel as though I am developing carpal tunnel or something. He said that because I have fibromyalgia, he wants me to see a somethingiatrist, basically, it is a doctor who is like a psychiatrist for the body and not the mind. The doctor overlooks the whole body situation to determine whether or not the pain in my wrists is associated with the fibromyalgia or if it is just the carpal tunnel. Do any of you have wrist problems??

[irishnan3]

I have wrist problems...but mine comes mostly from the herniations in my neck.
I have had surgery on both for Carpel Tunnel Syndrome.

[Melgirl200]

Hi all and Happy New year!

I've been down for a few months now and am looking for some help in possibly understanding if what I am experiencing sounds like fibromyalgia (and fully realizing your answers are personal, not medical). Like most of you, I've dealt with IC for years now. Yet I finally feel somewhat in control. Flare-ups are down and my outlook keeps getting better. In the last two years I moved states with my fiance (now husband) and been doing great; except for the re-occuring bouts of a "stomach flu" I've been getting almost monthly for the last year. Then for the last four months almost every day my legs and back are in agonizing pain. I'm fatigued, stiff, and hurt badly. I'm an advid hiker and outdoors person and can't get through a two mile hike without crying.

Anyway- I've been to the doctor several times. Blood work confirms nothing- except for a high leukocytes and high RA factor. The doctor doesn't know if it's rhemotoid arthritis in the making, or fibro. And unfortunately since I've moved I haven't found a good doctor that fully understands what IC is as well. I hear so many people with IC also deal with fibro sxs. I just am so upset at myself (even though I know I had no control over having fibro) because I don't know how to control the fibro sxs without medication; and mad that now I'm dealing with another "thing" that doctors seem to not want to deal with- it took me so long to find the right doctor back in Chicago who worked with me and believed in me. My doctor here seems lost but empathetic, and because of my insurance, I have to stay with doctors on my network.

I guess I'm asking if anyone can share their experience with fibro and if it is something that you deal with simultaneously with IC or did it come before, after, etc.? What is it like for you? I've worked hard to get myself off of IC medications, and now the only thing that is getting me through my day is Ultram, which I hate having to take. Yet I have to acknowledge that it is helping me feel normal again. And does anyone experience IC flare ups when their fibro is bad? Because that seems to be happening to me as well. It's like a reverse effect; my IC seems in control most of the time, but now the "fibro like" sxs seem to set the IC off. Man they seem related. Sorry this is such a long post- just looking for some feedback as to what fibro feels like to you and how you feal with it. Thanks a million times for your help- I truly appreciate it. Happy New Years once again!

All my best- ~Mel

[cartervj]

Fibro hurts like heck. If you would like to find out more and talk to others dealing with it, go to fibrotalk.com I was referred there from this site and I found some really helpful information and all of your questions will be answered.

My fibro and IC flare up together. The fibro is worse though because sometimes I forget the IC is there, until the fibro calms down and then I can feel the IC. It is crazy. The pain is constant and the worse is that you cannot function normally any longer. I too take Ultram and it does not work for me. I do not take any IC medication because if there isnt a cure, I do not want to take something for nothing. I try to control it through diet, although, you never know what is going to make you sick and when. Sometimes Pizza hurts and sometimes it doesnt. It depends on who makes it. It is crazy. I have had injections for the fibro and that doesnt help. I hope you feel better and I hope to see you on fibrotalk.

[Charisse]

Mel I'm sorry to hear about anyone struggling with possible fibro. If you look back in this thread you will see a lot of other experiences including mine. Don't give up. There are meds for fibro and I felt a ton better just a few months after the diganosis. I also had bouts of the "stomach flu" all the time and wondered why no one else in my family was catching it. Turns out I have a condition called Gastroparesis as well. I know how you feel having one condition after another. I felt like I was constantly being diagnosed with one disease after another and just when I started to get one thing under control then something else would pop up. In my experience I had my initial IC flare in 2000 and then went into remission for several years. I was diagnosed with Gastroparesis and Fibro in 2006 and IC in 2007. Feel free to PM me anytime!

[Melgirl200]

Thanks so much for both of your help and individual stories. I already am looking at the fibrotalk website, as well as looking back on this thread for people's individual stories. I guess I'm feeling better about talking to my doctor about this. I just felt at the beginning of this diagnostic process (which she feels we are still in) that she looked down about fibro, as if it was a no man's land of made up pain. I'm thinking now I have to get over myself and realize I need to deal with this with the same strong minded approach I deal with the IC. I'll check back in once I find someone to help me, but thanks again for your stories and information. ~Mel

[Charisse]

Mel if your dr feels that way about fibro then you probably need to find someone else. You want someone who sees a lot of fibro patients and is experienced. My GP was not all that experienced with fibro. I chose to see a rheumatologist in town who sees several other fibro patients. He sees what works and what doesn't, he's familiar with different med combos and he has a very positive outlook about my future. I felt like a completely different person after getting on the right med combo. I know you are limited to your network drs but I trust that there is someone else in your network that has more knowledge of fibro. It's similar to IC that it takes alot of leg work to find a good caring dr who understands that fibro is real so don't stop looking. Call the rheumy's office and find out if they see many patients with fibro first. A different GP may be more helpful too.

[irishnan3]

Hi Mel
When I was dx'ed with IC my Uro/Gyn asked me if I had experienced Migrains, constant body aches, IBS, constant UTI's, apparently these all fall together when it comes to IC.... I suffered from most of what he asked me. He pretty much told me from the get go that I had IC just from conversation. Then of course the test showed a positive dx. I would be concerned if the RA factor was higher then it should be. Fibro can act like RA, but if it is RA there are wonderful Meds. now that really help. I know it stinks being on these meds, but if youwant to continue a somewhat normal life style it seemes like it's the only answer. I use to hike 6 miles 4-5 times a week, and now I am lucky I can do a mile. I waited to long to get on something. Now I am trying to get back to where I was, doesn't feel like it's going to happen, but I will take it slow and see what I get. I just started a medication called Nurotin, it seems to be doing good so far. I haven't had to take my usual Vicodin for a few days now.:woohoo: That alone it a BIG improvement. I just pray that it continues. Happy New Year and wishes for a pain free life.

[lisabar36]

Hi, I was reading all the info here about Fibro. I went to my IC doc yesterday, I told him lately I been waking up like I ran a marathon, and I was always achy, but its been getting worse, sometimes if I touch my muscle it hurts, if I bang it, it hurts. I have had this for a long time, but it has gotten worse and he thinks its fibromyalgia, so now I am going to make an appointment with a rheumatologist, but I am laready on neurontin and Elavil, and I seen those are also treatments for fibro. So I hope as I increase my dose of neurontin, I start to feel better. Thanks. :)

[irishnan3]

Lisa, Do you just have musle pain or do you have joint pain to? From what I experience with Fibro, it seems to be more joint pain and stiffness. But all over acheyness. The first time I went to the Rhumotoligist he told me that if I was just having musle ache it couldn't be Fibro. So make sure you tell him you have joint pain to if you are experiencing it. How long have you been on the Nurotin? I just started and it seems to be helping. I am sleeping through the night which I haven't done in 2 years. I am only on 100 mg's 3x's aday for 1 month/then I go up to 300mg's I just hope it continues to work. Good Luck with you appointment.

[lisabar36]

Hi Patty, I also have joint pain, I have had that for a long time. I started Neurontin for my IC, I am only on 100 mg's 3 times a day now, and I have to work up to atleast 900 mg's a day he said. It was making me nauseous, so I was stuck on 100 mg's 2 times a day for a while, but now I am starting it 3 times a day. Hope it continues to help you also. :)

[irishnan3]

Lisa, noticed you are from PA. Where about? I live in Upper Bucks County/Springtown/ Hellertown area. I was wondering what drs. you are using?

[lisabar36]

Hi, I am in Montgomery county, Lansdale area, I see Dr. Echenberg in Bethlehem and he treats all my IC issues, he is also a gyn. I am not familiar with your area. I used to live in Bucks county, Warminster. I am seeing a neuro in Lansdale at the end of this month also.

[irishnan3]

Lisa, I am 8 minutes from Bethlehem. I go to the Un. Of PA hospital in Phila. We shoud meet for lunch some time. I Nanny in Doylestown close to Warminster where you use to live.

[lisabar36]

Hi, oh wow, I am about 20 minutes from Doylestown, I am doing my PT there. Start tomorrow. Do you see an IC specialist at Un of Pa? I went to one there, several years ago, he was pretty reputable but he wanted to repeat the hydro/cysto on me and I didn't want to. You can PM me. :)

[CherylSLP]

I have fibromyalgia along with IC (and low grade depression and ADHD); to be honest I think the fibro is the central disorder and the others come out of it; at least for me

Its a pain. but it is liveable. Some days hurt more than others. Believe it or not the single best thing that helps is mid aerobic exercise, Curves really really helps, have not been due to vacation and wow, I feel worse. A good mattress goes a long way too. I am, by the way a full time PhD student and was working full time before returning to school. I have less energy than others my age and that can be frustrating, but again, it is liveable.

As to diagnosis, go to your regular Dr. first (and switch if you think you have to, I had a great primary care Dr. at the time of my diagnosis of fibro some 7 years ago (before IC)) so you can be tested for other things such as rhematoid arthritis, regular arthiritis, Lupus et. al. to rule those out first. A regular Dr. can diagnosis fibro. I myself have never been to a rheumatologist although I self referred to the uro way back when. A pain clinic with multiple specialists could be very useful if one is available.

To be honest on the Dr. front however, chiropractors have had a better sense of what is fibro and what is not. They can tell right away and it really helps to get adjusted.

Hope that helps.

[Charisse]

Cheryl I agree that exercise is a huge help. I have to remind myself not to get frustrated that I will never have the same exercise tolerance as others my age as well. I'm only 33 but feel like I'm 60 somedays. That is hard to accept when I used to do 90 minute bootcamp style workouts! I also second your advice about working with many different practitioners. I have a GP, rheumatologist, chiropractor, physical therapist, Uro-GYN, GI dr and an allergist. All of these drs together have helped me in one small area which overall has helped my entire health. I just wish I could get them to communicate better! Oh and just one note -for me personally -I was not able to build up an ability to exercise again until I got my sleep addressed so that may be one thing to consider before beginning a workout regimen.

[lisabar36]

Is Fibro linked to Epstein barr virus? I had that when I was 18, I was pregnant with my son and I was so sick, I couldn't even get out of bed, and my energy level since then never was good! But it stayed dormant as I had it checked every so often, they called it Chronic Fatigue syndrome. I have days where I hurt all over more then other days, I never know how I am going to feel when I get out of bed in the morning and thats been a battle with me for a long time. I do not exercise, I never have the energy. I am usually busy with housework and kids, and thats all my body will allow, I get so fatigued. Thanks.

[curlycue]

:pray::pray::pray:

[purpleviolet]

I recently heard about some studies with d-ribose and fibro and chronic fatigue. It seemed to help some. I got some d-ribose powder for my daughter to try because she had mono before and now seems to get more tired than other kids. I'm going to take some, too and I got some for my mom who probably has fibro along with arthritis. I think d-ribose is a naturally occurring sugar, but anyway it is available as a powder. Anyway, I will report back on this in a few weeks assuming we all can be diligent enough to take this stuff. I'm sure you can find the studies on the internet. Be interesting if it would help IC.Wouldn't that be nice. PV

[curlycue]

yea, let us know how it goes. I hope it works for you and your mother. Good Luck.