mainly bedridden? please introduce yourself

[Hollyd]

I need to meet others who can't sit, can't always stand for long or walk for long. It's been 3 1/2 months like this and I"m going insane.

For the past week and a half I am able to lie down w/out pain and am able to be on my back for most of the time instead of on my side which is a big improvement. I hope it lasts.

This is hardly a life and its very depressing. I'm on the couch most of the day. At least I have a comfortable couch. I read so many people on the board are out and about and doing things and I hope I become one of them but right now I feel like I have a different disease and can't relate.

[ihurttoo]

:hi: Unfortunately, I can relate all too well. I cant sit long, stand long, walk long, or pretty much do anything for very long. My pain is bad when I get up and try to do anything, that's when it goes thru the roof! So, all day long, when I need to clean house, or do whatever, I have to stop and start. Like, if I need to clean, I will get up to do the dishes, but have to lay down before I dry them and put them away. Then, I get up to do that, and have to lay down again before I can sweep the floor. After I sweep, then, back to bed again before I can do a load of laundry. Then, back to bed again. After just doing that, I am usually hurting so bad, I have to stay down for several hours, if not the rest of the day. :(

When I HAVE to do something where I will be out of the house for several hours, I have to skip my breakthru meds on other days, to save it up to take it on those days, or I would never be able to leave at all. Even then, my breakthru meds dont take my pain away. It brings it down a couple of notches, down to about a 4-5. It is miserable, and at times unbearable. My long acting meds dont cover my pain, (or seem to bring it down much at all these days.) But, my Pain Dr. is still messing with my Neuropathic meds, even though they dont do jack-diddley. :( This has been going on for months now. I asked to be switched to something equivaliant, in case tolerance has set in, but he wont do it. I am miserable every day but, I just have to keep plugging on.

I wish I knew what to tell you to help you, (Heck, I wish I knew what to tell myself! :)) But, right now, I tell myself that I only have to get thru this moment.

I see my Pain Dr. again next week. I wrote him a letter today to give to him when I see him. (I always get too emotional and nervous to get it all out in person.) So, I wrote him a letter to tell him how much he helped me and improved my quality of life initially, but how these last few months I have needed more help than I have been able to communicate to him, and that I need something done immediately that will get me to a functional level again. It was 2 pages. I hope that he will read it and finally understand and help me. But, I just dont know. If you are seeing a pain Dr. and he isnt helping either, maybe you could try this too!

If you arent seeing a Pain Dr. then you clearly need a referral to one and soon. Most are not like mine. Though I have to drive 5 hours round trip to get to him, I am starting to think that I may have to go ahead and start looking to get another one, (even if that means I have to drive ANOTHER hour to get to one!) But, the bottom line is that we have to do what we have to do. And what we have to do is whatever it takes. That goes for me and for you!

But, this post isnt about me, it is about you. I just wanted to tell you that b/c I know you think you are the only one like this. But, as you can see, you arent. And WE arent! Unfortuntely, there are countless more out there just like us, all going thru the same thing. But, the good thing is that we all respond to different things and that some of the things YOU have tried but that didnt work for you, might help me. And some of the things that I have tried that didnt help me, might help you.

I dont know alot about you, though I have seen you post several times. Please tell me the meds, treatments, therapies, etc. that you have tried. Also list all the surgeries and conditions that you have. It would help to know when you were d/xed with each and why you stopped each med that you discontinued. That would give us a good place to start so when can have an idea of what to suggest for you to try next.

Also, please describe your pain. Is it burning, shooting, cramping, dull, sharp, aching, etc? Please give us the locations of your pain too. Is it all the time or does it come and go? Or is it all the time but the intensity fluctuates? What makes it better and what makes it worse? All these things would be helpful to know.

We want to help you. I truly believe that good things can come out of bad things. The one good thing that has come from this for me is that I came here and met all of you. Ironically, I also feel more fullfilled than I ever did with any job I had, by coming here and helping other people. Coming here, I feel like I have a depth and meaning in my life that it lacked before. I was sick and in bed for YEARS before I came here and dove in. During that time, I felt hopeless and worthless. I felt like I was wasting my life by laying in bed all day, (even though I couldnt help it.) But, now, at least I feel like I can do something there that is meaningful. (Well, at least till the lap top broke....now I have to sit at the computer again, until we can afford a new one. :( And as you know, it hurts to sit for very long. :() But, I have to stop and start, like with everything else. Like this post, for instance....it took you a couple min to read, and it LOOKS like it would take about 15 min to write. BUt, it has actually taken me much, much longer (about an hour and a half!) b/c I have to stop and start so much b/c I have to get up walk around for a minute and then lay down before I get back up and come back here to finish. It is exhausting, but I do it b/c it makes me feel like I can squeeze some meaning out of this disease and use it to help someone. (Not that my post will help you, but it is the HOPE that something I write somewhere, might help someone. Whether or not anything actually does, who knows, but at least I am using the 2 good things I have left...my mind, and my heart. Does that make any sense?)

I hope that your hope comes back soon! But until then, I hope you realize now that you arent alone. There are many of us in the same boat. Feel free to pm me anytime. I will be glad to give you my number if you ever want to talk to someone, I will be glad to listen, and I definately understand!

Sending you big hugs,
Amy

[ChrissySunshine]

Hi Holly, I'm another one who can't sit, stand or walk for long, and I, like Amy, can certainly relate to what you're going through. I am practically bedridden most days, and like Amy, I do a little bit, then lie down, then do a bit more, then lie down again....it really does suck.

Amy has offered some excellent advice, sorry I have no real words of widsom for you, I just wanted you to know I can relate.

Feel free to PM me anytime, tho I'm not on too much as I'm moving (AGAIN)! Please know you're not alone in this....there are alot of us that are severely disabled by the pain.

~ Chris

[verdicries]

holly i too am in your situation. it is rough. everyone says, 'sit down' or 'lay down' and relax...but it HURTS to sit! sometimes it hurts to just LAY! grrr. no words of wisdom, but i wanted to say "hi" and that you're not alone.

[tigger_gal]

:grouphug: Holl I was just like you until I got Jake, I was forced back into life. I know how hard it is for you. What meds are you on? I know my hydroxzine, flexeril and urised help me greatly.

[leelee88]

I am not now bedridden but I have been where you are a few times..I use to get tremendous pain and swelling and itching where I could not even walk.. All I could do is lay in the bed and cry.. The sad thing is though no one could tell me what was wrong..This went on for about 3 weeks and my GYN put me on elavil and an antihistamine.. She still couldnt give me an dg, but the meds seemed to help..Made me go into what I now know is remission for 2 wonderful years.. But it all came back with a vengence in Nov of last year..
I am sooo soo sorry you are dealing with this.. Its not something I would wish on my worse enamy...I will keep you in my prayers and thoughts and pray you will start feeling better soon...:angel:


Oh and Amy the way you described doing housework is the same way I do it.. I feel like a yoyo up down up down..lol

Ronda

[miasowell]

Hi Holly I too am bed ridden and am in my 7th day of the worst flare I have ever had. I only worked part of the week last week and ended up not working at all Friday, I can get up and do things but much like everyone else I have to take breaks in between and the pain really doesn't go away. I am not sure if you are experiencing any swelling in you pelvic area but I sure am. I look like I am about 4-5 mos pg! I can only say I feel your desperation I am only 7 days into this one and already I am stir crazy, I feel absolutely worthless, and Mother's day is tom. Haven't been a very good mother lately with this flare. Ah the drama that is my life. LOL I have just been compiling info on IC for my doc as I was only officially dxed in April and (by her own admission) my doc doesn't know a whole lot about IC. My goal this week is to get adequate pain mgmt, an appt with specialist, and or maybe a rescue instillation (read here that they seem to help others) maybe it could help me. I refuse to let this take any more of my life. I have been trying to figure out what is wrong with me for 3 yrs. Now that I know what I am facing I am fighting it with everything I have. That is what keeps me going. I can't say I haven't felt hopeless and depressed I have. Now I just have to heal myself. I do believe that your mind has a lot of control over your reaction to disease. Try to remain positive. Seek a pain specialist, cause it sounds like you need one. I know if I don't get mine under control I will go bonkers myself. (LOL) Maybe we can have a visit to the looney bin! Good luck and feel free to PM me anytime for support.

[sweetangel2080]

hi,
you are not alone...been like that for months and months now although do have some days of reprieve..

[Berkshire Road]

hollyd -- I'm emailing you, check in a bit, ok?

[Hollyd]

While I'm not at all happy that you suffer as well, I've really been in desperate need to be in contact w/ people whose lives are like mine.

I've had to take my first top up in a little over a week so I'm really feeling it and a bit out of it but getting good coverage at this point.

Being in Australia (native of California) I think you all wrote while I was asleep. I woke up severely depressed but the Tramadol (Ultram) seems to be helping w/ that as I havent had the top ups in awhile. I take a slow release one every morning.

Amy, you don't know how much it means to me that you took the time to write so much when it means you have to stop and start, even if you didn't, it's just very kind. It DOES help to hear you and everyone else say what it's like for yourselves so I have someone to relate to and dont feel so alone. And yes, Amy, you did reach me and you are helping as is everyone who posted.

I really hope we can stay in contact everyone. I'm not trying to have a pity party - I just think it's vital, for me at least, to connect w/ others who are in the same situation to break some of the isolation. I think it helps on a lot of levels.

FYI I do have a pain specialist. She works both w/ drugs and holistically. I am choosing to work holistically as much as possible because that is what's right for me. I am not opposed to drugs in some hard and fast way, I'm taking quite a lot of them but I need to approach this in the way that feels right for me.

It's interesting to notice what everyone is taking and some are on a lot of drugs and some are on fewer and using natural remedies yet we're still in the same condition health wise.

I will figure out how to create the signature thingy where I write what I'm taking and post again w/ that up. I'm just a little out of it right now w/ the tramadol.

I do want to say that I've had my valium upped to 2mg twice/day from once a day and I already take a lot of sedating drugs including 1.25mg of klonopin for insomnia at bedtime and I can hardly get myself off the couch where b4 on some days I was able to do the up and down cleaning some of you describe. I cut my klonopin down by 1/8mg a week ago to try to address this but of course it isn't doing much and you can't cut it too fast. I got advice on it. That makes me even more down I guess. I'm using the valium for PFD. I'll see my pain doctor on Tuesday and get more advice. I like her a lot and feel she's helping me. She uses acupunture/acupressure as well, we've only just got started but I feel the improvement I've had has been from this. I feel she "gets" me which is invaluable.

I get varying types of pain, it's always between the legs, never on top, sometimes it feels deep inside the urethral area, sometimes it feels like the burning of a UTI but there isn't one, I get the PFD muscle spasm type pain, which at its worst, is stabbing. I have varying degrees of staccato type urination, I have had severe frequency which has been much better in recent weeks but it comes and goes. I get no urgency. Sometimes my husband putting the most mild pressure on ANY part of my body, including my head reverberates pain down there and that's where I've been at times during the past few days.

I just really hope to keep in contact w/ you guys, whoever is up for it. As I say, I'm not looking to make each other more depressed, just working toward health and not feeling so isolated. It was really great to see so many responses. Thank you for sharing and reaching out.

[tigger_gal]

I really hope we can stay in contact everyone. I'm not trying to have a pity party - I just think it's vital, for me at least, to connect w/ others who are in the same situation to break some of the isolation. I think it helps on a lot of levels.

It is very important and very helpful to keep in touch with others that have IC.
We all are treated differently, because we all react different to meds. Which really sucks, thats why IC is so hard to treat.
So tell me, what brought you from Cali, to the land of down under ;)?
You will not make anyone depressed posting, I do believe it will help you alot.
please by all means keep posting and tell us how you are and how we can make you feel better.
I am so glad you found us.

[Hollyd]

dx early Jan 07 by IC specialist based on symptoms

symptoms came on suddenly on Dec. 31 06 though have had mild freqency only around period, thought to be associated w/ uterine fibroid.

had to have D & C for symptoms suspicious of cancer at same time so had cysto/hydro done as well on Jan 31. Gyn didn't see anything on my bladder. (Either he wasn't skilled to see it or I'm one of those who doesn't have glomerulations). I was much worse after this procedure, stopped being able to sit or stand for long and much more pain.

Medicines:

Tramadol (ultram) SR 150mg. 1/day in am
Tramadol 50mg (as needed)
Valium 2mg 2x/day for PFD

for insomnia (prior to illness and continuing)
Rivotril (klonopin) 1.25mg @ bedtime
Trazodone 100mg. @ bedtime
Benadryl 50mg. @ bedtime
Melatonin 4mg long acting @ bedtime


Supplements:

Fish Oil 4000mg/day

CoQ10 100mg/day

Aloe Vera Whole Leaf Freeze Dried (non laxative) 3600 mg/day

Hormonal Changease Herbs (Black Cohost root, Sarsaparilla Root, Licorice root, False Unicorn Root, Blessed Thistle Herb, Squawvine Herb)

Quercetin 1000mg/day

Milk Thistle Herb 14g/day (for liver)

Musclease (150mg magnesium as amino acid chelate & 40mg B6)

Hemagenics Intensive Care Iron Supplement (Iron amino acid chelate equiv. iron 40mg, chickweed herb 800mg, calcium ascorbate equiv. ascorbic acid 340mg, calcium citrate equiv. calcium 52mg,, thiamine hydrochoride 12mg., Betacarotene 10mg, pyridoxine hydrochoride, 10mg, Cyancobalamin 800mcg, Folic acid 800mcg.)

Chromium Picolinate 400mcg

Glucosamine 1000mg

Vitamin E 500 iu/day

Zinc - Zinc sulfate equiv. zinc 49.5 mg, Magnesium sulfate equiv, mag. 4.9mg, Thiamine nitrate 5mg, B2 5mg)

Indolplus (Diindolylmethane) 100mg/day

MSM (Methylsulfonylmethane) 7gms/day

Also did one session of acupressure w/ pain management dr. and should be having acupuncture tomorrow.

Working on addressing stress differently.

On IC diet STRICTLY.

Using all non-irritating products that come in contact w/ genital area.

May have had chronic fatigue in hindsight, have IBS that is controlled by gluten free/ fructose moderate diet. Had many UTI's over the years but fewer in recent years. Had a brief episode resembling this w/ pain about 5 years ago but it went away on its own quickly. Had something on this order but much milder about 10 years ago that dr. diagnosed as the result of contact w/ dyes and fragrances in soaps and such and treated w/ topical 2% hydrocortisone and it went away. Stayed away from all such things since that time.

Have been a vegetarian except for fish for about 20 years and have always been very health conscious, eating well. Have been really healthy otherwise. I'm 51.

[tigger_gal]

Hi Holly,
You can ask about Elmiron, Hydroxizine and an anti spasm med. I have IC, Fibro, myofascial pain, and a few other things. I would get up get the hubby to work and my daughter to school, and then back to bed.. When we got Jake I was pulled right out of my bed, and it was the best thing that happened to me. Not saying that it would work for you, but I wish they could manage your meds so you don't feel like being in bed all the time. I take a muscel relaxer that helps me alot. I also got on wellburtin xl to help with the depression.
hope you are having a great day. :)

[ICNDonna]

How long have you been taking all of those supplements? One thing you might discuss with your doctor is temporarily stopping all of the supplements, then going back on them, beginning with just one for at least several days before adding another. I'm not familiar with all of the ones on your list, but I do know that licorice root can be a problem for some people.

You might also talk with your doctor about trying elmiron and possibly a smooth muscle antispasmodic.

I just hope you find some answers soon.

Sending healing thoughts,
Donna

[Ann228]

It is good that you are seeking support here. It really does help. I have found a lot of helpful info by reading the boards.
I agree with Donna's advice about the herbal supplements. I tried some and they definitly made me worse. I would definitly ask about the Elmiron, too. The smooth muscle antispasmodics are another good idea because they work specifically on muscle tissue like the bladder has. They are usually won't make you sedated, either.
Will the doc up the dose of the extended release Ultram? I take 300mg a day but don't get sedated like with the regular ultram.
How about a seizure medicine like Neurontin (gabapentin) for the burning pain? The seizure meds work for this type of pain because it results from damage to the nerve endings. They calm down the nerves and help block the pain signal to the brain. There is a new med that works for this pain called Lyrica (pregabalin) that has had good results for some women, too.

Try writing down some of the suggestions everyone made and talk to your doctor about these options. I am hoping that you will get some relief soon. It can take a while so try not to get too discouraged.

[Kathi]

Just sending you gentle hugs. I hope you get some relief very soon. Kathi:)

[Hollyd]

Thanks:-)

[Hollyd]

Hi Holly,
You can ask about Elmiron, Hydroxizine and an anti spasm med. I have IC, Fibro, myofascial pain, and a few other things. I would get up get the hubby to work and my daughter to school, and then back to bed.. When we got Jake I was pulled right out of my bed, and it was the best thing that happened to me. Not saying that it would work for you, but I wish they could manage your meds so you don't feel like being in bed all the time. I take a muscel relaxer that helps me alot. I also got on wellburtin xl to help with the depression.
hope you are having a great day. :)

Hi Tigger Gal,

It's not depression that keeps me on the couch, it's pain. having to take an hour ride ea. way to the pain doctor and then another appt. the next day where I did a little walking had me in excruciating pain even the next day and today is not looking like it's going to go very well.

I'm glad having a child helped w/ your depression.

[Hollyd]

How long have you been taking all of those supplements? One thing you might discuss with your doctor is temporarily stopping all of the supplements, then going back on them, beginning with just one for at least several days before adding another. I'm not familiar with all of the ones on your list, but I do know that licorice root can be a problem for some people.

You might also talk with your doctor about trying elmiron and possibly a smooth muscle antispasmodic.

I just hope you find some answers soon.

Sending healing thoughts,
Donna

Hi Donna,

What are the names of the smooth muscle antispasmodics? Valium seems to help somewhat w/ the PFD type pain but not the other. I hope you're not talking about pyridium because you can't get that in Australia grrrrrrr. I think I have to call the govt. office to see if they'll let me import it but Aussie docs might not want to prescribe it for me.

I let a week pass b4 adding any new thing. I've done it very methodically. This is true for everything but the fish oil and zinc. I have to take zinc or I get deficient and I can't imagine the fish oil being a problem. I even stopped my iron until I found out that bufferred C should be okay. I didn't notice any worsening when I reintroduced it.

While on everything I had a week of no pain (if I continued to do very little)...so there was improvement for whatever reason so I don't think I'm on any irritants. I think the good week had to do w/ my cycle. though prior to that I haven't had any good days at any time of the month since my hydro/cysto D&C so it's hard to know what caused them, I would sure like to repeat that experience.

thanks

[Briza]

Hi Holly
I'm sorry you're in so much pain. I've had many days like that recently. I feel blessed right now I don't have children, the pain can be disabling and I'm lucky my cat and dog are able to get by with being fed and a short walk a day lately. And they don't mind hanging out with me on the couch or bed all day long either.
Best wishes and hope you get some relief soon. :grouphug:

[Hollyd]

I'm still trying to understand this. I read that the purpose of elmiron is to create a coating on the bladder wall because of things like glomerulations on the wall, to try to heal it. That doesn't sound like nerve pain.

How does the nerve pain come into it? How do you know if it is indeed nerve pain? I know a first line of treatment for neuropathic pain and IC is elavil - but I'm unclear on how nerves are involved or what types of pain signal that it is nerve involvement. Considering that we don't all get better on the tricyclics, I guess I, as well as you and the docs and the researchers aren't too sure or there would be drugs that put us into remission, even if they were different drugs for different IC'ers.

[Briza]

From my understanding, it is the faulty lining of our bladders that causes the nerves to be exposed and be irritated by our urine and anything else irritating in it. Elmiron is supposed to repair that so the nerves aren't exposed and so easily irritated.
Elavil seems to work for some of us. For me it works for frequency, by having a supposed relaxing effect on the bladder. It doesn't do much for my pain.
I agree with you that at this point, there is no known cause nor cure for IC. Probably many causes, and therefore some meds work for some us and some don't.
Wish I had more encrouraging words, only that with time and treatment, I have gotten better. Just now I'm in flare...meaning my symptoms are above my normal everyday med manageable symptoms.

[Ann228]

HollyD,

I think Briza gave a good explanation of how elmiron works to cover the exposed nerve endings by rebuilding the bladder lining. I work in neurology and this system is the least understood and most complex system of the body. It has multiple functions including alerting us to pain. I work in neurology at a hospital. I find the nervous system so interesting because it is so complex and hard to understand.

Pain is very complex but it is the nerve endings that start the pain signal back to the brain. The brain then alerts you that something is wrong and tells you it hurts. There are also chemical receptors and reactions involved in pain but it all works back to the nervous system which begins in the brain. There are hundreds of nerves in our bodies that all branch out to hundreds of tiny nerve endings everywhere. The damage may not necessarily be the nerve endings themselves but irritation to some body tissue like bladder lining or muscles. When tissue is damaged/irritated the nerve endings surrounding the area are responsible for alerting your brain something is not right.

The nervous system is also responsible for telling our bladders when we need to urinate by controlling the bladder muscles. This complex reaction, which is controlled in the brain and sent through the system of nerves, gets all mixed up in IC and we have frequency and urgency with the pain. The muscles get all tense and don't fucntion properly because they are receiving mixed signals.

Narcotics block pain signals high in the nervous system in the brain. They bind to specific chemical receptors in the brain. In turn the brain tells you that you don't hurt because the signal there is blocked. Other drugs work lower in the nervous system blocking the pain there. Some drugs, like valium, tell your brain to relax the muscles of the body and stop being so tense. That is why muscle relaxants are usful in IC.

There is a natural defense system that starts when you get something like a cut. It starts a reaction and certain chemicals rush to the site to stop the pain signal and heal the injury. This usually works for things like cuts, bumps, and bruises but is not powerful enough to stop the pain like in IC.

I am not saying that IC occurs because of nerve damage just trying to explain the complex reactions involved in pain. There are sometimes multiple issues involved in IC and other pelvic pain issues. Our bodies are very individualized in how they work and how they react to certain meds. That is why some women have more difficulty finding relief from IC.

I hope this helps you and maybe others to understand how pain occurs in our bodies a little better. I also hope that you will find relief soon and get to feeling better.

[Briza]

Wow, Ann, what a thorough and simple explanation about why and how we feel the pain and why and how pain meds work. :bow: I'm a science teacher, you put me to shame :lmao: I'm going to save your post, it is so very very good. I know all this stuff from my biology degree, but having to explain how it all works, I can't, because it's been so many years since I taught biology.

[Hollyd]

I've read that treating neuropathic pain is pretty much in its infancy. Combine that w/ little understanding of IC and we're really in a bind aren't we?

Last night I was reading Moldwin's book where he gives some of the possible explanations for the pain in IC. I hadn't understood that nerves could be damaged by the bladder being compromised in ways that aren't specifically nerve related. That one is still a bit confusing to me but you've explained it a bit further. When I think of nerve pain I think of things like the pinched nerve I had in my neck once. I guess I think of it in more mechanical and direct ways.

I know the Tramadol (Ultram) I take is not a true opiod but acts on opiod receptors which I believe is pretty much the same thing as far as the brain knows. I get tolerance very quickly w/ this drug, just as you can w/ opiods.

I guess the first line of drugs for neuropathic pain are the tricyclics. I get severe retention w/ elavil, don't know how I would do with the others. Right now, being on Trazodone for sleep b4 this started and having pain and frequency relief during the night, I've just started giving it a try during the day. I really hope it works. If it doesn't, I guess I'll have to trial nortriptyline next. Not a nice drug. :-(.

Thanks for taking the time to explain this further.

[vm]

GREAT post, Ann! :)

[stac7_8]

Wow, I have never heard it explained that way. That was so imformative and wonderful. I understood it and that is the best part. You went from A to D and didn't skip B and C. Thank you so much!!!

[Texas Baby]

Holly,
I am so glad you are seeking support from this board. It has helped me in the past especially when I was at my lowest. I was bedridden from Nov. of last year to Feb. of this year. I ended yo having my bladder out. I know what you mean about the pain. Some days it was almost impossible to function even for the simplest task, such as taking a shower. My heart goes out to you!
I hope you have a good weekend!
Blessings & Hugs,
Eva

[Hollyd]

Hi Eva,

Thanks for your response. How are you doing since your bladder removal?

Holly

[tigger_gal]

yep jake helpes alot, but my depression is from the pain. ggrrr I hate to admit, that I have to take a vicodine and a flexeril in the morning to function with a level 5 pain.
Is your pain more with urgency or is it all the time. I'f it is urgency pain and frequency, you may consider looking into the interstim. Also did you know there is a new implant for pain? its called the bion. I am guessing your pain is all the time (((hugs))) when I start to flair I will take 2 urised right away, and take them 3 times a day until it goes away.
sending you hugs and hope your pain goes away soon.