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Message for January from Fibromite. OK for others to read.
3 Replies
fibromite.u.k. - May 23

Hi there January, thanks for asking about me. Not many of the older posters seem to be on here these days, so don't know what's happened to them.

I am still struggling on. I have a really good rheumy now and she is really trying hard to get to the bottom of things with me as she says that although I do have fibro, she thinks that it is secondary to the main illness. I have been having lots of tests for some time now. They have found that I probably have Sjorgrens Syndrome, which makes a lot of sense of some of my problems and looking back, I think I may have had it for many years. I am getting some help for that from my opticians. I am also waiting to have a biopsy on a gland in my lip which should tell them for sure if I have it. My blood tests don't show that I have Sjorgrens, but it doesn't always show up in the blood.

Even though it seems likely that I have Sjorgrens, my rheumy says that even that is not the primary disease and that she is still trying to work out just what it is. I asked her if she thought it was RA but she said no, definately not, but that I do have an auto-immune connective tissue disease, so I am puzzled as to what she thinks it might be.

I now have to make a decision on whether to go on a drug called Azathioprine which is a disease-modifying anti-rheumatic drug or DMARD, and is used to suppress the immune system and also sometimes as a chemo treatment. It is a difficult decision to make as it has so many side effects. One of them is to make infections very serious, especially chickenpox or shingles. It also has a very small risk of a lymphoma.

I have been on steroids since January and it has made me a different person. Before I was on them, I could hardly walk and the pain just felt too much to deal with. On steriods I am still tired, but the pain is managable and I can get about and do so much more. I have to come off them though in July and that is why the doc wants me to try the new drug so that I don't go back to how I was before the steroids. I am still concerned about what to do as I feel I can't bear to go back to that dreadful pain again, but I am also bothered about the risks.

I am praying about it, but have not come to a conclusion yet.


kvc33 - May 24

Since steriods have been affective for you I would suggest that you look into natural adrenal gland support. I have read that steriods have a cortisol-like affect on the body which is a hormone produced by the adrenals that reduces pain and increases energy. Low adrenal function is quite common with CFS. You can get your adrenals tested by ordering a kit from integrativepsychiatry dot com. Since the immune system is involved with fibro I would stay away from anything that suppresses it. You could end up with all kinds of nasty infections that will further erode your health.


January - May 24

Hi fibromite! Glad the steroids are helping. I took them as a kid and as an adult - they have nasty side effects long term. But they do help with allergies and inflammation. (Which might give you a clue as to what your problem is!) The DMARD sounds nasty. Did you ever have chickenpox? Because if you did, you can easily develop shingles in later years, and that can leave you with permanent neuralgia. There is a vaccine for shingles - but it's controversial. Sounds like DMARDs shut down your immune system and make you more vulnerable to infections.

I agree with your rheumy about fibroymyalgia in general. I think there is usually an underlying disease that causes the symptoms. If she thinks you have a connective tissue auto-immune disease, I hope you will check out the new website I'm going to tell you about. Over the years, I've met so many people who helped their painful conditions by changing their diets. There are great sites like the Celiac Sprue Association. I've just found another one, the glutenfreesociety (dot) org - there are lots of good articles on there. They also work to train physicians about this issue. If you google for the article titled: "Grain - A Double Edged Sword" you will be able to find the site hosted by the gluten free society. The article is enlightening, and at the right you will see links to lots of other articles about health problems linked to gluten. I just figured out that I am, in addition to gluten, even more allergic to oats. That's what was wrong with my strict gluten free diet - I eliminated my muscle pain, but still have fatigue and joint pain. It is caused by oatmeal (used in a lot of "gluten free" products!!!) About 15% of celiacs (allergic to gliadin which is in barley, wheat and rye) are also allergic to avenin which is in oats. These allergies appear to be genetic, so you have them from childhood, often without symptoms. Meanwhile, your body is silently breaking down. The inflammation reaction in your gut may or may not produce classic GI symptoms. A lot of us get neurological or auto-immune diseases down the road and never suspect it's due to food allergies!

You have to do your own research and make your own decisions. You live in your body and know what you can tolerate, and what risk/reward ratio you want. If it were me, I would do everything possible to stay off potent drugs like DMARDs. I think your body is a self-healing mechanism - unless it's too damaged to work - and the immune system should be supported, not turned off! But I am not a doctor, and you have to work with your doctor to figure out what's best for YOU. But it may be necessary for you to take this drug, for quality of life, if you can't get to what the root problem is. Life with severe pain is tough! First, I'd turn every stone to find out what is upsetting your immune system and causing it to over-react. I'd start with allergies. Get tested and see if anything shows up - but even if you test negative, it's worth trying an allergy elimination diet or a gluten free diet for a year. I don't know if you already have - I remember your posts about how very sick you were, but I don't recall your posting about food allergies. I know that when I am avoiding foods I'm allergic to, my immune system is MUCH stronger and I don't get sick like I used to.

I've posted so much about gluten sensitivity and celiac disease, I don't want to rant more! You can plug celiac or gluten into the blue search box at the right and get all the threads about it.

There's a LOT to learn to educate yourself about medicine - and protect yourself too. Many doctors don't know much about the drugs they prescribe. I'm sure they mean well, but they often don't realize the drugs may leave you with permanent damage, in addition to what you already have. So be responsible and educate yourself.

And yes, a lot of people seem to have left the site. It gets busy at times, and other times not so much. I know Terry Springer started his own site, but haven't been there yet.

PS - I see kvc just posted. kvc, I wanted to let YOU know about the same article I mentioned above - because there is a place on the glutenfreesociety website that talks about RLS!!


Jocelyn - May 28

I have been diagnosed with Sjogren's. My blood test comes back negative and the lip biopsy did as well. However, my Rhuemy says, I have it, regardless of what the test are showing. I agree, I have had drying of the eyes coming on for years and dry mouth. He feels my high sed rate is caused by the Sjogrens. After being on this site for a while now, I have a lot more questions for my Rheumy. I have gone on a gluten free diet. ( I have cheated a little) but still feel a lot better. I am seeing a PT and he has helped me so much. I am on a low dose of prednisone 2.5 and it is a nasty drug. I wish I could come off of it, but because of the Sjogren's i am very limited to allergy meds because of their drying ability and the allergy meds are very nasty to my eyes. I have severe allergies and the Prednisone keeps my allergies controllable. So, I am stuck on the prednisone, it also helps my asthma as well.

I'm not sure what is causing all my pain. My Rheumy feels it is the Fibro, but i am not not sure he is totally correct. I have a muscle that is so knotted up that after it being worked on for months it is finally releasing and I am able to do things I have not been able to do in years.

Good luck with your Sjogren's diagnosis, don't be surprised if your lip biopsy comes up negative. That doesn't mean you don't have it. I also believe I have connective tissue disease, and I need to talk to my Rhuemy on my next visit.

Keep us posted

Take care



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