Fibromyalgia, CFS and IC (Linked?)

[tiggersorensen]

Does anybody feel that maybe all three of these illnesses are caused by just one illness that manifests itself in different ways. All three of these illnesses showed up in me within two weeks of each other. I feel like maybe it's one thing and it just has multiple symptoms.

I know the theory about APF, what if whatever causes FM and CFS cause the production of APF. Or the shrunken adrenal gland theory; that could probably effect all 3.

Just curious if anyone else feels the same way.

[tigger_gal]

sarah,
yes they are all linked together, the believe that ic also "maybe" and anti-inflamitory disease.. fibro, myofascial pain, pfd, all go with IC for some people.. I am sure you eill recieve a ton of replies on this one.
Brat

[vm]

I don't have any other autoimmune disorders, but there are folks out there who do have more than just the IC.

[ICNDonna]

I'm like Kim --- IC is my only disease.

Donna

[csocain]

Sarah, yes, I believe that IC and the other related conditions are autoimmune in nature and systemic as well. Which one causes which one I don't know, but I know that they have seemed to run rampant through my body since January 2004. Just when I would get adjusted to one disease, another one would pop up. No medications have worked so I am relying on dietary changes to deal with each of them as well as pelvic floor physical therapy. My body rebels BIG TIME with medication. I have IC, IBS, GERD, lactose intolerance, pelvic floor dysfunction, and celiac disease. Anything else that I have is not related to these types of things. Go figure!

Hope this helps you some. Blessings to you and yours.

[ICNJess]

I have IC, Fibro/CFS, IBS, V.V., to name a few, and they are annoying. I truly believe that it is part of one giant syndrome.

[tiggersorensen]

When I was diagnosed yesterday with Fibro/CFS, my mom's response was "How could anything else possibly be wrong with you?"

I think that pretty much sums up how all of us feel. If I could go three months without a new diagnosis, I would dance a jig and throw a party.

[ICNJess]

I like to lump it all together and just say, "it's all connected"...that way I don't sound like too much of a nut!! Ya know how people are sometimes...

[JenG]

Jess,
I like your way of thinking! When I tell people every illness that I have (Fibro, IC, IBS, PFD, RLS), they look at me like... what now?? I do think they are linked and telling people it is part of a large syndrome makes more sense.

[Eccles]

I have IC, CFS & FMS & believe that they are all linked.


( Dr St Amand believes they are all part of the same condition. I'm following his Guaifenesin protocol as outlined in his book 'What your doctor may not tell you about fibromyalgia....' It's too early to say if it's effective, but the book's interesting & he makes no money from the Guai).

[michie]

i just wrote about my dx with fibro @ fibro help and its amazing but it seems like every time I turn around the dx me with something else they are also testing me for cushings syndrome on aug. 23 I'll let you know how that goes. Make you feel like a head case with all these stuip aggravating diseases that no one has ever heard of I think people think im making most of it up. DONT I WISH

[tiggersorensen]

I know what you mean. I feel embarrassed every time I have to make a new Dr's appt. There's a part of me that doesn't even want to go to the Dr anymore, even if I'm dying.

[Sarojini]

Well, I have a lot of things wrong (see my signature) -- and now I've got chronic idiopathic hives/dermatographism, which are hives that show up for no reason and are thought to possibly have an autoimmune component. Anyway, it certainly seems like all of this stuff could be related, as I was diagnosed with all of this stuff within 2 years of my IC diagnosis. It's weird, to say the least... and I too am sick of doctors!!!!

[tiggersorensen]

I also get hives that have no allergic reason. I've long suspected that I get them as an autoimmune reaction. I ALWAY get them when I have bronchitis, and sometimes I get them just when I'm sick. Interesting, I didn't realize there was a name for it. There seems to be a name for everything doesn't there? I have some sort of thing that I don't remember the name for that causes pigment to recede. So I have some areas on my face that are whitening. Who would have thought there would be a name for THAT? And how in the heck do these Dr's remember all this stuff?

[spickett4USA]

I have posted on here before off and on and each time I come back in I'm always left with the feeling that at least I'm not alone. It's been miserable dealing with this really long flare up. Last fall I suddenly started hurting again in the bladder and since then it's been tests, drugs, tests, drugs and I keep having to work longer hours to make up the time for the dr appts. and tests. And the pain med (Avinza 60 MG timed release in combination with Elmiron and Atarax) has made me feel slower, and slower, and slower. Has anyone else felt this way? I finally reduced the Avinza to 30 MG and the pain doc. is not happy that I want to get rid of it all together. I also reduced the Atarax to 1/2 at night so I could wake up and at least walk on the treadmill for 10 mins. Last year at this time I was walking 50 mins. a day at 3MP and now Im reduce to 10 mins. a day at 2.5MPH. Ugh! I've gained back 20 pounds in about 9 months. I call it my "virtual pregnancy". Two weeks ago I suddenly got so tired I couldn't even finish my weekly house cleaning. I had to do it in two days. What use to take me about 1 1/2 hours. I feel so exhausted and depressed the primary care dr. had nother ultra sound done of my abdomin to see if I had liver disease or something, after she had three viles of blood drawn. All came back normal so she finally put me on Prozac to help me deal with the emotional aspect of it all. I did increase my vitamins and minerals. Magnesium 3 times a day and Niacin once a day, On top of drinking a bottle of "Boost" once a day and taking the usual Centrum and Vitamin B. From what I read on a CFS web site this apparently helps. I feel like a real pill dropper now :rolleyes:
Does anyone else have any suggestions and if this has happened what did they do and how long did it take to get back to an IC normal? I can't afford to lose my job. My mom died 5 years ago this month from taking 80 pills aday for her vrs. diseases and last year I lost my dad to cancer. I'm really afraid.

I appreciate any and all responses. Thank you, and the best to all of you suffering with this.

Sherrie in Oregon

[michie]

the name for the white spots on your face is vitaligo(sp) there is a cream you can put on it and you can also do light treatments for it just talk to the dermotologist my son has had it since he was 2 and the treatments really help. The only thing it dosen't help is that the hair under one arm is completely white and the other is black hes 13 and that kind of bothers him but hes really a good sport about it.

[tiggersorensen]

Hi Sherrie,

I know where you're coming from. I have terrible problems with fatigue. I too gained 20 pounds last summer. I had to stop working in order to get mine under control, and I still have flare ups. The worst for me is the fatigue. My day is very carefully planned to accomodate these problems. I wake up and spend 10-15 minutes doing weights (on a bowflex) and then do 20 minutes of cardio. On some days that may be all I get accomplished, or I may not be able to do even that. The other thing is my diet. I've got certain foods I know I can eat and I eat them every day. If I deviate from that there's a high likelihood I'll eat something that makes me hurt. Hurting causes fatigue.

I know how you feel about pills. I'm on so many I can't keep them straight anymore. And it looks even worse because I take so many vitamins. But when I'm on "only" four prescriptions I think I'm doing good. Once it hits five I start worrying. I have had so many tests done and none of them do any good because everything I have is not testable. It's so frustrating and I feel like a hypochondriac. I'm lucky because I have a wonderfully supportive mother who is also a very good friend.

By the way - I'm in Vancouver WA.

[SandyRN]

Hi,

If you read my novel below you will see I have a lot of things that many docs consider autoimmune. I've grown weary of researching and trying to find out why I have so many problems...and many of the problems I have seem to be SYMPTOMS of things like Lupus, MS, etc.

It sometimes just baffles me. I've had every single blood test you can have done. I AM hypothyroid, and only have normal levels taking Armour Thyroid. I took synthroid and it did nothing. The Raynauds is sometimes classified as a symptom, sometimes classified as it's own disease/syndrome.

I have fibro, cfs, mps......crohn's, ibs....IC, and all the other stuff.

You have definately motivated me to get online tomorrow and do some reading again. Theories are all over the place....but honestly, I think 99% of the medical community that has seen me is TOTALLY stumped. Sometimes I feel like a mutant LOL.

I just saw where you get hives. I have allergies too! I get hives all the time. I had shingles not too long ago, and had them for *9* months!

I dont know, but I'm gonna do some reading tomorrow, and maybe we can come to our own conclusions.

Hugs, Sandy

[tiggersorensen]

At least I'm a mutant with you! Nice to know us mutant's can stick together.

[PenguinK]

I have IC and PFD so far as a definate dx. I am still looking for a dx for thr chronic fatigue and aches I suffer from. I asked my urogyn about Fibro after seeing how many others have it tied to IC.

I hate to seem like a hypochodriac--I've been called that all my life until I was dx with GERD at 27, and now this at 34.I want to throw my file at everyone whosaid that as I grew up. I'm hoping to get the doctor to test for this when I see her again this week. I hope I can get some answers soon.

It does seem to be an avalanche of diagnisis after the firstone, doesn't it???

KK

[JenG]

I was reading my paper this morning (the LA Times) and the lead story in the Health section is on Fibromyalgia. Along with a lot of interesting info, they talk about fibro being a pain-processing dissorder that may also help explain other chronic pain conditions such as irritable bowel syndrome, interstitial cystitis and vulvodynia! (nice to see them mention the IC)

At the end of the article there is a box which is titled: Fibromyalgia's link to other disorders. They say the suspected cause of the condition - central sensitization- in which nerve impulses in the central nervous system malfunction may also play a role in:
-Irritable bowel syndrome
-Chronic fatigue syndrome
-Gulf War syndrome
-Interstitial cytitis
-Vulvodynia
-Chronic low back pain
-Chronic headaches
-Endometriosis

It's interesting that as we voice our opinion that these may all be related, the medical community is too.

[tiggersorensen]

That makes so much sense about it being a pain processing disorder!!! With all this study into this stuff, I'm sure we must be getting much closer to understanding it. I hope! I figure if I'm ever a multi-millionare I'm going to donate millions to the research of these illnesses.

[JenG]

Just found the article I referenced online on the Arthritis foundation web site:

http://www6.lexisnexis.com/publisher/EndUser?Action=UserDisplayFullDocument&orgId=2499&topicId=100015118&docId=l:304569585

[SandyRN]

Oh man, this one paragraph in that article made me SO angry:

"It's possible that fibromyalgia patients simply have a different mind-set, he said. They tend to catastrophize small burdens, exaggerate minor discomforts and quickly lose hope. This psychic despair, he said, can alter neurotransmitters and influence other central nervous system functions."

I'm glad the entire article isn't like that, but just having that skeptical doctor's views in there takes away the credibility that the rest of the article gave us.

Thanks for the article though, it was interesting.

Sandy

[tiggersorensen]

What a jerk! I think we're some of the toughest people out there, and from reading the boards I know that there is not ONE single one of us that gives up. We all fight every day.

[Ginny]

I have more autoimmune illnesses than I care to tell people. They would not believe me. After many years (20) of IC, Fibro, Celiac, VV,Hypothyroid, etc, I ended up with Type 1 Diabetes at age 47. It's all very overwhelming.

[JenG]

I agree with you Sandy and Tigger - what a jerk! I basically ignored that part of the article, just like I ignore all those idiot doctors that think there is nothing wrong with me except for what is in my head. :cussing:

I do think the potential for new meds and the further research into the neurological aspects of all the interconnected diseases does, however, make the article worth reading.

Sorry if I gave you anything else to be angry about, God knows we have enough already!! :grouphug:

[SandyRN]

Jenny,

You didnt make me angry, it was a great article. I just wanna slap the guy that said that particular statement and discredited Fibro, etc.

He'll get his one day. Thanks for posting that article, seriously, it was good to read something positive (which most of it was) and to see that some new meds are being researched!

Hugs, Sandy

[tiggersorensen]

I thought it was a great article as well, thank you for posting it. I'm excited about the idea of all this being a pain processing disorder because it makes so much sense. I hadn't heard that theory and I'm glad you shared :) I was just honestly surprised that someone who has a whole lot of education could be such a moron!

On a tangent, there are a lot of people who seem to think that when things are "all in your head" that somehow invalidates them. I don't know about you guys, but I've found "mental" issues to be every bit as real as physical ones. And they're actually very perplexing because not much is known about the brain.

Personally I'm very sure that none of these (IC, Fibro, CFS, Endo, IBS, etc) are mental disorders. Having experienced both sides of the coin (I'm bipolar and obsessive compulsive) I DEFINITELY can feel a difference in "mental" vs. "physical". Sometimes I'd like to get hold of some of these morons and say "Oh yeah, use me as an example of that idiotic logic." I'm a fighter and I absolutely DO NOT let these things control my life. I have some bad days, but all in all I don't know of one person who could look at me and see me as weak, or "overly catastrophizing" things.

Okay, now that's off my chest. That's been building up since Tom Cruise voiced his idiotic opinion on depression.

[saptree]

What does fibro feel like? I have been struggling with constant muscle tightness and knots. I have tried muscle relaxers and they are no better.
Sherry

[tiggersorensen]

I wake up feeling like I've been hit by a truck. I ache everywhere and there doesn't seem to be any reason or cause. I never know when I'm going to ache and when I'll be okay. My aching tends to be in the connective tissue around the joints (tendons and ligaments). Then it kind of radiates out into the other areas of my muscles. About the only areas that don't ache horribly are my abs and lats. That's about it.

Saptree - I love your Petty quote.

[JenG]

Sarah,
Good way to describe it - being hit by a truck. This past week my Fibro has been flaring sooo badly. My physical therapist thinks it is because the barometric pressure is dropping (getting more humidity and cooler). Every day there is this constant burning/aching deep inside. Not restricted to my joints as arthritis would be, but all over.
I've tried all my different pain meds, massage, rest - nothing seems to be helping. I even tried to get out with a friend and take my mind off of it. We went to breakfast yesterday and I had trouble cutting and eating my pancakes my hands hurt so bad. I am so exhausted I just want to stay in bed all day, even though I can't.
I need to find another doctor that will listen and take this pain seriously. The last rheumatologist I went to wasn't much help, either is my primary care. Actually, my gyno has been the most helpful, and I really see him for my installations and to keep my IC in check.
Sorry for the ramble (now my hands are aching again!). Hope all is well with you.

[tiggersorensen]

Oddly enough, my psychiatrist seems to be the one who helps the most with all this other stuff. I woke up hurting horribly today too. The funny thing is, with me, I wake up hurting so bad I don't want to move, yet moving the joints and muscles seems to warm them up and ease the pain. Weird how things work like that.

You might want to ask your Doc's about Neurontin, I hear that's a good one for chronic pain. I find sometimes if I ask specifically about something I can kind of herd them in that direction. I try to make sure to work out every day. They tell people with Fibro not to lift weights, but I have a BowFlex and it helps me a lot. I just can't work out when I'm having bad fatigue (like this week!)

Every day I just wake up with the intention of working out a bit and if I get that done, that's all I have to do and I've done something great. If I can't get it done, then I figure I will as soon as I'm better.

However, I don't have the pain as badly as some people, my problems are more along the lines of fatigue.

Jenny, I hope you feel better soon. Best of luck.

[tac1962]

Thanks for all the posts about fibromyalgia.
I think I might have it and don't know where to start...does anyone have any suggestions?
tc

[SandyRN]

Hi tc,

I wrote to you in the other thread, but you might start by finding a rheumatologist. If you're lucky, and get a good one that believes in fibro, they can diagnose you after ruling out every other possible problem. It can take a while. If you've got any questions please pm me, or email me through the board. It can be a long road to a dx of fibro sometimes. It sure was for me.

Take care, Sandy

ps...I wanted to add, I won my SSDI case based on fibro and cfs alone---this was before an IC dx.

[tiggersorensen]

My fibro diagnosis was actually quite easy. My primary care had done a bunch of blood tests. She sent me to a rheumatologist and the rheum diagnosed me at that appt. The only real problem was figuring out that something other than IC was causing my problems.

[SandyRN]

Sarah, you're so lucky. I had a very hard time getting a diagnosis and it shouldn't be that way. Since I've been dx'd, things are better for fibro patients, just like they're better for IC patients now that it's become better known.

[tiggersorensen]

I got really lucky. By the time I went to my uro I was somewhat familiar with IC and had stopped eating some stuff so that diagnosis went really quick. And then the Rheumatologist also went really quick. I've been very lucky. I did go through a lot of hell before I went to the uro; but the diagnoses themselves have gone quickly once I went to the specialist.

I think I have endo though and I haven't had any luck getting anywhere with that yet. My primary care was unavailable so I went to someone else. BIG mistake. Not only was she not very good, she was really rough with the speculum and she hurt me really bad. Since then I haven't wanted to go back and pursue the endo dx.

I hate going to the dr, I'm so dang tired of it!

[SandyRN]

I know what you mean about being tired of the doctor. I've tried to leave my primary care doc alone for a while because I was pestering his poor nurse almost every day with some new problem...he treats my fibro, actually everything except the gastro problems I have and the IC.

Then there's the uro, who I feel like I drove away because he just isn't knowlegable enough about IC....I had so many times where I would SWEAR I had an infection, so to be safe I'd wind up in his office. This last time he sent me for a cat scan, and of course it was pretty much inconclusive....they were looking for stones. I still am having kidney pain but I feel like an idiot calling yet again about it. So, I found an IC specialist about an hour or so away from me and have an appt with him in a few weeks.

It's pretty bad when you're so sick of going to the doctor. Most people can not even imagine what that's like because they don't have chronic health problems.

It's very humbling, to say the least!

Hugs, Sandy

[tiggersorensen]

I'm so sick of going to the dr that I'm actually refusing to go to the dentist! I figure it's something that just isn't as necessary and one less trip to somebody makes me happy. I got really lucky with my uro, he's on the american board of urology and he had a display in the room about IC. There's another woman who goes to my primary care dr that was diagnosed around the same time as me, and she's got a dr who's doing instillations. She's having a heck of a time and she's always in pain. Like I said, I got really lucky.

[dminton]

I too suffer from the following: IC, IBS, RLS, fibro, migraines, allergies, etc. For many years it was just IC, which was bad enough, but gradually all these other things came into play too. I am so sick of people saying it's because I'm anxious, or I have unresolved issues; I ask, who WOULD NOT be anxious with all this going on? Some days, I think "what next?" What else could go wrong? It breaks my heart that the very thing I love most, physical activity, now makes me flare with overall muscle pain that lasts for days.

I feel quite certain that in about 20 years, they will have a handle on this and know a lot more about it, and realize that there is a central cause for all these separate diagnoses, and they will no longer accuse us of making it up or having it be all in our heads. But it may take something like the Gulf War Syndrome, which afflicts mainly males but could be very similar to what we are going through, for the medical community to get going and take it seriously and figure it out. In other words, when something happens to mainly women, it takes a while for it to be taken seriously. Sad but true.

[SandyRN]

dminton, I have been told the same thing about being "anxious" by doctors that I promptly dumped....Yes, I was/am anxious, I'm sick ya jerk! LOL

I read somewhere about CFS/fibro being similar to Gulf War Syndrome, and that they were doing research at Walter Reed, or some other military hospital....so maybe through this indirect relationship we might actually benefit, like you said.

I sure hope things happen quicker than 20 years....I want real help now :(

[tiggersorensen]

I started thinking yesterday about trying to get a part time job (I'm applying for ssd) and within four hours I was in a flare and had fatigue that was tying me to the couch and making me move slow. I get so damn frustrated. Like you guys, I'm anxious because I'm constantly hurting and sick. I'm tired of medication, I'm tired of new problems, I'm tired of hurting. What would any one of us give to be "normal" and not have these problems.

I don't know anything about Gulf War syndrome though, but dminton is absolutely right that it isn't taken as seriously if it effects women instead of men.

[dminton]

To Sandy -

I can't wait 20 years either!!! I'm seeing a fibro specialist in an hour, will be curious to see what she has to say. Probably expensive tests and supplements not covered by Blue Shield! Now there's a negative attitude for you. I would love to just go alternative with all this, but that's out-of-pocket expense for me, which out of the question right now on limited income.

I will reply to your private email after this busy day ahead. Thanks!

Diana.

[Lisa Person]

I think meds can ;) make you feel tired, I don't know if you get cfs from it. Cfs has so many range of symptoms, and it sounds like you have alot of grief, that can turn physical too in our bodies. I have had chronic pain, and fatigue from it, and meds made me feel more dragged.. I think drugs get us through crisis, but there hard on us in the long run. I still don't have a strong diagnosis from what I have, but I spend my nites voiding, and that makes me tired through my days. I was in the hospital last year, though t I had another urinary tract infection came back with just viral infection, don't know where and what caused it. It gets complex, but I'll say a prayer for you, because I also know when I grieved for many years, my Dad grieved my mother and never got over her. For 25 years I felt grief work on me emotionally, not only did I miss having a mom but I missed her being around for my dad. That kept me in a perpetual state of emotional fatigue that drained me. I do alot better with some things now after he passed and got over that grief also. But also have sport injuries that complicate fatigue too. I hope you get your answer but my experience drugs do have side effects . I think there good for crises, but not in the long run only my opinion. I'm glad your popping those extra natural things for the body.

[Lisa Person]

In response to the questions about cfs and fibromyalgia and Ic being connected, that how I learned Ic existed, I read the latest book On CFS and Dr who wrote it, said Ic can be easily connected. but being on this website I'm finding people who aren't. So that was news to me.