Joints hurting again :( - Interstitial Cystitis Network Support Forum

lm2 · 01-31-2004, 09:37 AM

I tried to find my old post which I posted under this category but it only seems to go back one page. Anyway, I posted in October last year that I was having pain in my joints and didn't know what was going on. Fortunately, my doctor said he sees this a lot in young patients and it would likely go away within a few weeks, which it did. I was soooo relieved. But today I woke up and they're hurting again. I'm so scared. I'm only 31 and I've had IC since I'm 26 and have lost so much, I just feel like enough is enough! I can't deal with anything else on top of everything I already have wrong with me.

Does anyone else have joint problems? A part of me is wondering if this is some weird side effect to my meds, but last time I looked it up and didn't see any mention of this as a side effect. I don't want to have to go off of them...but I'd rather it be that I suppose than some other disease process going on. It just started today so hopefully I'm getting ahead of myself, but I'm just scared since I had assumed it was a freak one-time occurance (my doctor said it's called polyarthralgia and they don't really know what causes it, so it's one of those things they chalk up to a "virus"), but if it was something like that, why would it come back? frown

**ICNJess** · 01-31-2004, 10:13 AM

Is it possible that you could have Fibromyalgia? go to http://www.fibrohugs.com and see if you fit the profile. I have joint pain (I'm 21) and that is what I have. Many ICers get that in addition to IC. Good luck!

Hugs and hope,
Jess

Silverfox · 01-31-2004, 11:17 AM

Maybe you are like me, see this good site to learn more about fibromyalgia. Type in Fibromyalgia in the search!
www.drlowe.com

Sure hope reading what Dr. Lowe has to say about fibromyalgia and what causes it, and the correct treatment. scream

I am no longer have fibromyalgia pains. wink

God Bless You,
Sincerely Silverfox

Zookeeper · 01-31-2004, 04:15 PM

Hello,I have fibro & have had a lot of joint pain this past 2 months have been realy bad.I am going to PT for it and has help some what in getting my strength back but am having a hard time I can't do all the excecises at once but spread them out threw the day.I like the sites that have been put up on this post they are very good ones.I also like the National fibromyalgia association at:
http://www.fmaware.org/index.html
they all have good info on fibro.
Take care & good luck.Love,Zookeeper Kim

***Katrina*** · 01-31-2004, 11:56 PM

I don't know for sure what my joint pain is from but since it is all on my left side I think it may be gas in my body from too much acid. Calcium does seem to help sometimes and like you it isn't a constant thing...I can go weeks without any....so maybe you should try extra prelief when it happens. If anyone else can say..hey this is what you have Katrina...please private message me.

I hope you find your answer...just like I do.

grouphug

lm2 · 02-02-2004, 01:26 PM

Thanks everybody. Do any people with fibromyalgia have joint pain as their only symptom? When I read the sites about it, it doesn't seem to really fit my symptoms. I don't really have any muscle or soft tissue pain or the other symptoms they typically mention.

I'm putting off calling my doctor for a few more days because I'm still hoping it'll go away.

peiti · 02-02-2004, 03:55 PM

Lm2:

Your symptoms sound so much like mine. I started to feel pain in my right knee two years ago. The pain was not there every day but it was very severe sometimes that I couldn't even walk. I checked the Fibromyalgia website and I didn't fall in that category. I only have right knee pain. I started to take glucosamine and chontrotin last year and found these two supplements help a lot.

peiti · 02-02-2004, 04:00 PM

I didn't self-diagnose me if I had Fibro or that. I just don't have the intentions to get a diagnosis.

rnewman · 02-02-2004, 04:59 PM

Glucosamine and Chondrotin is very good for joints, and I even take it for IC.

Joint pain can be many, many, many things. Your doctor could be right about the virus. Many viruses that children typically get end up being very painful for adults. Fifth's disease, or parvovirus, as well as mononucleosis and cytamegliovirus can all cause "myalgias" (pains) or "polyarthritis." The latter of these three viruses, although self limiting, can last a month or more, and Parvovirus in adults can also last about a month. You might have had a rash with parvo, or swollen lymph nodes or tonsils with mono/CMV, or, you might not have.

I can however understand your frustration. I have had joint pain for some time now, about a year, and I am 24. At first, one doctor diagnosed me with Fibromyalgia. When I went to another doctor, he said I didnt quite fit the symptoms (and I didnt.) He did methodical testing.....first started with a bunch of bloodwork (rule out arthritis and other autoimmunities) in which he found my thyroid to be boarderline. He started me on thyroid medication. Then he did some urine testing and found my mercury level to be VERY high. So I am being treated for mercury toxicity.

I still have some days better than others. I ran out of my thyroid medication last week for two days and my pain increased dramatically.

I also had bloodwork done recently when I had a bad tonsillitis. Turns out, my blood has antibodies to mono, so I must have had that at some point. Although I dont remember having it, who knows if THAT wasnt part of what precipitated my joint pain last year.

I know i didnt give you many answers, in fact, lmao I may have given you more questions....but I just thought I'd throw my story out there, food for thought.
Hope this helps.
Hugs,
Rachel

***Katrina*** · 02-02-2004, 10:16 PM

I use topical analgysics for mine.....interesting thoughts but I doubt mine is viral....comes back so much. I am suspecting gas in me.....along with other things. I hope we both find out what it is soon. grouphug

blondee · 02-03-2004, 05:34 AM

lm2,
I would suggest seeing a rheumatologist if you haven't already. Sounds like there is definately something going on and it doen't coincide with fibro. I was just dx'd with rheumatoid arthritis (joints are swollen, stiff at times and cause some pain) and fibro. They will do a complete blood work up as well as other tests to find out what is going on with your body (immune system). Hope this helps! grouphug

lm2 · 02-03-2004, 04:07 PM

Thanks everybody. Ugh, I don't feel like having to deal with this anymore.

I was happy and relieved with the virus explanation last time around, but now that it's come back almost 4 months later, it seems less likely. How could that be? Unless it's something continuining that maybe I'll eventually get over. But I'm worried something else is going on, like arthritis or other autoimmune things, or who knows what...Well, I called my doctor today so I'll go in and see what he suggests. I'm afraid they're not going to be able to really explain it and it's going to be something else i'm going to have to just learn to deal with, on top of everything else.

I'll keep you all updated. Thanks again for your replies and support.

rnewman · 02-04-2004, 03:23 AM

Lm2~

I just wanted to add, that it IS possible for some of these viruses to reoccur, paticularly Epstien~Barr Virus, which causes mononucleosis.

There have been more and more documented cases of young women who get this virus and it remains active in the immune system causing polyarthralgias and fatigue, usually. The good news is, a few simple blood tests can let you know about that. Just something to discuss with your doctor.

If you and your doctor can not come up with anything, Jax is right, a rheumatologist might have some insight.
Hope this helps.

Hugs,
Rachel