HealingWell
Search Close Search
☰

is it fibro? need your help

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/26/2014 6:22 PM (GMT 0)
This is my first post here. I've come from the UC forum. And here's my post there on severe joint pain, stopped remicade: https://www.healingwell.com/community/default.aspx?f=38&m=3129960&p=1&ord=a
Wasn't getting much of a response there because I think many UCers use anti-TNFs.

The rheumatologist is trying to determine what I have, whether it is adverse reaction or kicked off concurrently lupus, myositis, fibro, etc. So far i have tested positive for ANA, very high titer for anti-dsDNA, and now positive p-ANCA. Major symptoms are severe (debilitating at times) joint & muscle pain and weakness. Over the past month, it has moved around from hands/wrists to elbows/shoulders. Couldn't use my hands & arms for a while. Now with the help of prednisone, I can walk, carry a bag, etc. but if I do too much or stay in one position, it results in severe pain of affected joints/muscles results for a few days and then moves to another area.

I've spent weeks reading all the resources here in related forums & underlying medical articles. But your experience would be very helpful. Has anyone had this combination of things? Are there other tests we should be doing? Feeling grateful to learn from your past posts, and for prednisone! I'm discouraged and scared, as you can imagine. {I'm going to post this on the lupus chat too because I'm desperate for support. My apologies for cross-posting...}
Posted 7/26/2014 9:04 PM (GMT 0)
I have lupus and fibro. It's a pain in the patoote but I deal. I'll discuss more with you in the lupus forum.
Posted 7/27/2014 7:31 AM (GMT 0)
Thanks for the reply. I'm feeling overwhelmed & don't know where I can find support & learn from others with similar experience.

Forgot to mention I get costochondritis too. I wonder if that's MCTD. How do we find our way with these overlap auto immune diseases? Feeling stuck & scared. Trying to stay positive....,
Posted 7/27/2014 2:53 PM (GMT 0)
Patience, CP. These conditions are hard at first.

From what you have written, this sounds more auto-immune, and thus not fibro. Don't the biologics sometimes cause a side effect of autoimmunes? I remember that was one of the reasons I rejected humira for my use. I could be wrong, I have never studied remicade. I also have UC, and now Crohn's colitis. I am lucky enough to be able to control with meds and SCD.

The first year with chronic pain conditions is hard. Figuring out what you need to do to feel better, what you can no longer do unless you want to totally throw your body into a flare, and, of course, what medication combo will help you feel better takes time. Some here are newly diagnosed, others have been dealing with it for years. And everybody finds a different combination of medications/daily life changes/diet/exercise/supplements that works to help them feel more themselves. So don't give up, but observe, try things, and see what works. Generally, when you discover that this is pretty much how things work now with your body, and that you can take positive steps towards avoiding a flare, you will be able to work with chronic pain, and not against it.

Welcome aboard.
Posted 7/27/2014 5:40 PM (GMT 0)
Feeling better is a journey, and it takes the trial and error..as we are each different in illness...talk it out and you will feel better just moving forward
Posted 7/28/2014 8:12 PM (GMT 0)
Hi, Contentprof, and welcome! You know, I have had something similar, believe it or not! I was watching TV when fibro hit me. It started in my joints....my toes...and worked up all the joints in my body. When it hit my elbows, it was like I had slammed my "funny bone" and I got that horrific pain shooting down my arms into my hands. AND it stayed that way for over two weeks! I couldn't do anything. My arms and hands were practically useless and soooo weak. The pain was horrible and I would lay in bed crying because there was no way I was able to sleep. I even contemplated having my arms amputated to hopefully get rid of that pain. (My thoughts...not the doctor's.) Unbelievable!

I was put on ibuprofen even though I have Crohn's disease. This has been a wonder drug for me and I've been taking it for 27 years. Yes, I did develop ulcers twice...one was a bleeding ulcer...and had to stop the ibuprofen until they healed. The second ulcer happened three years ago. I stopped ibuprofen and got so bad I couldn't walk without two canes. I had raw nerve pain shooting down my legs and I barely could lift my feet to take a step. My strides were in inches, too. Trying to get my legs in bed was a trick, too.

I went to see a board certified rheumatologist and was diagnosed with ankylosing spondylitis and sacriliitis. They wanted me to take either Humira or Remicade infusions and I declined. Too many side effects for me. So, with the help of my Internist, I was put back on ibuprofen (600 mg every six hours if needed), prescription strength Pepcid AC to lessen the stomach acid to help prevent ulcers, and also a medication called Misoprostol (Cytotec) that has shown to help protect the stomach from ulcers. I always take it with food, too, since that helps protect the stomach from ibuprofen. So far so good for me! This combination helps keep me in control of the pain. Right now I only am taking the ibuprofen three times a day...every 8 hours.

Fibro affects the muscles, tendons, and ligaments and from what I have read it isn't considered an inflammatory illness. Many with fibro don't have inflammation when tested. Those that do most likely have other things going on. Yes, I do have fibro but I also have several inflammatory illnesses...Crohn's, ankylosing spondylitis, as well as auto-immune inner ear disease. I have a lot of inflamation going on but fibro isn't causing that. But I have found that magnesium malate and vitamin D3 added to my daily intake to helpful things, has helped a lot with the muscle, tendon, and ligament pain. You will find info about these in Fibro 101.

Have they ruled out Lyme disease for you? I see they are looking at lupus but Lyme can cause the joint pain also. Just wondering.

Do be careful with prednisone...please! With my auto-immune inner ear disease, I was put on 80 mg. of prednisone daily for a month. The first few weeks were spectacular! No pain and I even landscaped my front yard by myself! LOL Then it hit. It basically shut down my immune system and I started getting anything that came down the pike. I spent the last two weeks on the sofa with antibiotics and I was so sick that my doctor was calling me at home to check up on me! I was bad. This drug also can cause osteoporosis. Between prednisone and a PPI (Prilosec) I did develop osteoporisis so now I have another thing on my list of health issues. This is why my Internist put me on Pepcid AC since it's not a PPI.

Do read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links would be What Else Could It Be and A Thorough Explanation of Fibromyalgia. You just might see yourself there. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 7/30/2014 6:00 AM (GMT 0)
Thanks for the helpful replies! I couldn't type for a few days because of the pain, but doing a bit better at the moment so wanted to convey how much I appreciate your posts.

It's so weird how the pains move around, find a new spot and stick for a few days, & then find another spot. Right wrist, Left elbow, right hip, etc. It's so discouraging. Whenever I do anything (garden a little or carry something), I know there will be consequences. The one constant severe pain has been right shoulder. The pain is anterior & posterior & extends to neck/spine. Dr said that's where it may be originating from - so nerve pain, and extends all down my arm to numb hand at times. Has anyone had this - any advice?
Posted 7/30/2014 7:53 AM (GMT 0)
Since Feb. this year my right shoulder has hurt constantly. I use heat, topical rubs, and gentle stretching to relieve the pain. Not much helps. :-(

Last year it was my left elbow for a full year. I think the fibro finds a place it loves and sticks around for awhile.
Posted 7/30/2014 11:53 AM (GMT 0)
Welcome back! Doctors right now believe that fibro is a neurological problem and this affects our nerves. When you first open Fibro 101, you will find an interview with one of the top doctors studying this illness. He explains this very well.

I had a frozen shoulder a year or so ago. It was extremely painful, I couldn't lift my arm at shoulder height, couldn't reach behind my back at all and I couldn't reach out for something. The pain did radiate to my elbow. I found out about trigger points and got The Trigger Point Therapy Workbook and this showed me where the trigger points could be found that would cause the shoulder pain. They feel like bumps that are very tender. They actually are muscle knots. I found them in my chest wall leading up to the shoulder, some nearly at the top/front and top/back of the shoulder and some in my neck. My massage therapist showed me how to press on them as hard as I could stand and massage that area. Then repeat this a couple of times and then leave it alone and go back to it later. This worked wonders and now I have full, complete mobility of my arm again with no pain.

So google this and see what you think. I got my book on Amazon and they let you read a little of it so this would give you an idea if you want to buy the book. It has diagrams of the body and shows you where to look for trigger points causing the pain. I had pain in my side, checked the book and saw the trigger points for my side were along the spine! I never would have guessed that but much of our pain is referred pain.

Hope this helps.

Sherrine
Posted 9/2/2014 3:54 AM (GMT 0)
Checking in a month later with an update and my deep appreciation for you folks on the fibro forum, when I was in crisis and trying to figure out what was going on.
Although we still don't know for certain, the diagnosis is that the remicade caused Anti-TNF Induced Lupus and polyneuropathy, but I'm doing much better a month later and tapering the prednisone down from 40 mg gradually. (By the way, I couldn't also treat it with methotrexate due to lung problems.) Fortunately, pred has been enough to turn it around, and I'm down at 10 mg now. Still tapering.
Those tests (esp the EMG & nerve conduction) were really tough, and I didn't do well on the gabapentin / neurontin (to manage the numbness & tingling fingers). I didn't like the feeling of being out of it because I couldn't function well at work. I keep dropping things. I hope it will get better in time.
Anyway, I just wanted you to know that your support has meant the world to me, as I tried to get my footing with these unexpected and debilitating symptoms, establish a relationship with a knowledgeable and caring rheumatologist, on top of managing ulcerative colitis.
A heartfelt Thank you!
Posted 9/2/2014 6:42 AM (GMT 0)
you know I have Crohn's disease but for 11 years the doctors thought I had ulcerative colitis. The development of the colonoscopy test showed I really had Crohn's.

Anyway, the gave me Azulfadine...generic name is sulfasalazine....and Librax. The Librax would relax the intestines and the sulfa drug helped a lot too. This did keep things under control so this is a possible suggestion for you.

Sherrine
✚ New Topic ✚ Reply