Joint pain and IC?

[glassd18]

I have been suffering with pain in my ankles, knees, hip, lower and upper back, elbows. These symptoms seem to get worse when I have a bladder flare. In other words my joints seem to flare along with my bladder. I thought maybe I had Fibro, but I have some muscle pain, but no pressure point pain. I have been on Vivelle Dot Estrogen patch for a while, and wonder if that is causing my joints to hurt, but I don't want to go off it right now, but I also don't want joint pain either. I've been terribly symptomatic lately IC wise, and joint pain wise and am really tired. Anybody have any ideas?

[glassd18]

I forgot to mention that my doctor tested me for autoimmune diseases like RA and Lupus, along with inflammation markers via blood test. These came back negative. Hugs to everyone.

[mlzippy7]

I am so sorry for your pain! I have lots of joint and muscle issues also. I have chronic lyme which causes a lot of mine though as well as fibro.
Many days I am in so much pain I can not do anything but go from the toilet to the bed all day and night.
I hope you can find some relief.
Take care!

[glassd18]

I'm sorry to hear that Mizippy. I am not in quite that much pain. Just enough to make life difficult, and bring me down. I thankfully have a high pain threshold, but I gladly hit my bed every evening, and there are times when I think life has to be better than this. I pray and hope that you feel better soon.

Now as an update to this post: I decided that I was going to experiment to see how I felt by taking off my hormone patch (Vivelle Dot), and low and behold I am feeling much clearer in the head, less anxious, and my joint pain seems to have dissappeared, except for my sore neck. Even my bladder, for the moment, seems to be happy. I don't know what this means, but I truly am confused. I am going to have to wait longer to see what happens more long term, but I didn't want to be without hormones, but it looks like I am one of those people who can not tolerate them. I'll be 44 in February, and wanted to be able to take them at least until 50, but not if I feel worse that's for sure. Anyhow I need to call my gyno and discuss this with him, but honestly I never feel like they can quite make anything from it. I've tried many different ones, and all have a differnet effect. Anyway not sure if this is a long term solution, but we'll see if my joint pains stay away while off of it. Thanks for listening, and I'll jump over to the hormone thread to post more on this.

[samanthalacey]

Hi!! It's so crazy to me that you are asking me about this because I just had the weirdest experience...

I have IC and Lyme Disease, so I always assume my joint pain is from the Lyme Disease. However, my sister has arthritis (and she's only 18 so it's not normal) and no IC. She's been seeing many rheumatologists to try to get help, and the most recent one told her the craziest thing.

The doctor asked my sister if anyone in the family also has bladder problems or pink eye problems. I have pink eye issues, and of course the IC is the bladder problem!! Apparently there is a gene that can cause problems with the bladder, joints, and eyes (or only one or two of those). The fact that my sister and I have these issues is indicative that we have that gene.

The doctor is testing my sister for the gene, and if she is positive for it they will test me, too. This is all new stuff, and might have nothing to do with you, but it is something to look into (especially if you get pink eye a lot!!).

It's a long shot... but you never know... it just really amazed me lol

[leelee88]

You could have fibromyalgia. Have you been tested for that.. It will make your joints and muscles hurt! It makes my whole body hurt..

[glassd18]

Thanks for the feedback everyone. I have since found out what was causing most (I still have some aches and pain, but not at all at the same level) pain. I was using Vivelle Dot 1mg Patch. One day I was thinking what if it is something that I'm using, like a med. The only thing I could think of was my HRT treatment so I pull off the patch, and low and behold my pain went down, and almost away. I still have lower right hip and back pain, but I'm pretty sure that I have sciatica along with referred pain from my bladder. Anyhow, I'm using Estradiol tabs vaginally now, and I'm waiting to see what will happen long term. If my joint pain comes back then I know it's hormone related. I'm not willing to give up my hormones just yet. I'm 44 years old and went into premature ovarian failure at 34 years old. Anyhow I'll see how this all plays out. I do not doubt for a minute though that the bladder, and joint pain can be caused by something other than hormones, and I could still have something else going on. I don't think it's fibro because it's mostly joint pain, and I do not have the pressure point pain consistant with that disease.

Samantha please keep us updated on what you find out, and if you can could you please tell us the name of the gene you are talking about. I do not suffer pink eye, but my Mom did alot.

[samanthalacey]

I'll definitely keep you updated... I don't really understand a lot about it and I'm going back to talk to my doctor so I'll let you know!

[glassd18]

Great!! Let us know how you do.