Hi all, been having some trouble this past week. All in all this summer has been very good for me, I think it's the fact that we've had somuch rain and overcast sky...Yippy!! Anyway the sun has come out this past week and it's ben hot, I stay away as much as possible. I don't know it that's what's brought everything back or what. Anyway I am all sore and achey and brain foggy and "squidgey" my word for anxious because I don't really feel anxious just shakey and squidgey and dead to the world tired. So I was researching fibromyalgia and chronic fatigue, boy that sounds like me. The wikipedia definition of fibro is a really good one for me. Then I add the horrible fatigue. So my question is where does the pain and fatigue from sjs end and FM begin? is it possible that most of the debilitating symptoms I get are not necessarily from the sjs? Does sjs cause the same kind of all consuming pain and fatigue that FM and chronic fatigue does? I do know that I always have insomnia leading into this situation and that amitriptyline really works good especially when i double up from 10 to 20 mg but then i throw my GI tract into a mess with the dryness so I just can't take what does help me! ??? thanks Sandra
Sandra,
This is a question that I have been pondering for the last 6 months. It's kind of like the what came first, the chicken or the egg question.
My doctor never told me about the fibro until my last visit :o So much for sharing info with the patient.
I will be interested in hearing what others have to say about this topic.
Sandra, I don't have your problems, but I do know that many Sjoggies have fibro as well, so it is possible that you may have both. I'm sure others here will get back to you as I have seen threads where they have mixed complaints. Wishing you well! Dolly.
Hi Sandra :)
Neither of the conditons can be neatly packed away in any pigeon hole. Symptoms overlap and I don't think you'll ever be able to work out what is causing what.
I haven't been officially dxd with fibro but I have been officially dxd with Hashimoto's Thyroiditis, SjS and Lupus. They all flared up at the same time as the menopause. Loads of the symptoms overlap. If I mentioned symptoms in here, in the menopause forum, the thyroid forum and in the Lupus forum all the answers said "Yes - meno/SjS/lupus, thyroid - cause that."
I've stuck with this forum and the meno forum - even though I'm through the 'change' now - because I like the people. The thyroid forum was fantastic until things got regulated and I don't feel ill enough to be in the lupus forum where everyone seems to be suffering terribly.
At the end of the day - we try to get the symptoms we are suffering alleviated. They can't stop the disease anyhow, so it doesn't really matter what causes what. When new symptoms appear, it's worthwhile getting them checked out to see if they're related or not. Unfortunately SjS doesn't stop us getting other things too.
Take care - Scottie :)
My rhuemy is good, and she listens. But I do puzzel her I think. When we first met in Nov 06 she had requested blood work ups every month for 6-8 months based on a high SED rate she got back. What puzzeled her was that she belived(s) that I have fibro but usually with fibro there is not a measurable inflammation or SED rate. But my SED rate stays consistantly high, about 2 or 3 times higher than the norm. But I have a negative rheumatiod factor for arthritis. So there must be something to sjs and pain and a raised inflamation or SED rate as there is not supposed to be for fibro. ??? i wonder though about the SED rate being about my poor old GI tract which is always totalled and very painful. Maybe that's where the high reading is coming from. Who knows.....Sandra
Hi Sandra,
I have Fibro and Sjogren's and so many times it is difficult to tell where one leaves off and the other begins, especially with the pain and fatigue. Has your rheumy pressed on the "tender" points that are typical with Fibro? That is generally how they can definitely diagnose it, especially if you have other issues with similar symptoms. Fibro can also flare like Sjogren's does, making the symptoms much more intense. There are theories that Fibro and CFS are basically the same, but with a few variables.
There is no doubt that Sjogren's alone can make us miserable, but coupled with Fibro it can feel like torture at times. They are having some promising results with Lyrica for Fibro and, of course, rest and limitations are important.
Good luck. If you do have Fibro, I hope you get a diagnoses soon so you can better understand what you are dealing with and possibly get some help with it.
quiger
Hi Sandra!
I also have sjogrens and fibro and I have given up trying to figure out where my pain and fatigue come from. As Quiger says...it hard to say where one starts and another leaves off. My rheumy follows up with me every 3 to 4 months and I take my meds regularly for pain and inflammation.....so as long as my symptoms are being dealt with....thats all I can do for now!
Good luck to you in getting a proper diagnosis so you can also get the proper treatment!
I have Fibromayalgia and the Dr can not make up her mind between Sjs or lupus. I think it depends on her mood. If it is Dry eyes, dry mouth, or swollen glands, I consider it to be Sjogren's. If a butterfly appears on my face, it is Lupus. RA is in the joints of my hands and feet. Fibromyalgia is in the connective tissues of my muscles. Chronic Fatigue is when I can not get any restorative sleep and I am exhausted all the time.
I know that this is not an accurate delineation of the symptoms because they all overlap. But is does help me decide which alternative therapies I can go to for assistance. It also helps to minimize the duration of the flairs to several days instead of several weeks or months.
I have maintainence things that I do continually to keep things under some form of control. Humidify in winter, dehumidify in summer. Ionizers year round with weekly cleanings. Medications from the doctor as prescribed. Daily dose of supplements. Morning glass of carrot juice. Daily range of motion and stretching exercises. Avoid as much sun as possible. Try not to get too cold or too hot. I am sure there are other things but I do not remember them through the fog. Most of these items are part of my daily routine.
Thanks so much for the info. There is a hudge learning curve, trying to figure out what's causing what. I think it's real important however to try do my best to figure out what I can. I now an certain that I am dealing with sjs and fibro. Problem for me is how to medicate? I have the world's most sensitive stomach :( so I am so limited in what I can use and of the ones I can use am limited in how I can take them! ???
So as mentioned the amitriptyline in a 20 mg dose would be great, it really helps with that horrible insomnia stuff and therefore the restful sleep really knocks out the fibro. Only I cna't take the amitriptyline as it trashes my stomach and GI tract...or who knows maybe it's fibro? I don't know much about it yet.
How do you handle the fibro medicine wise? I have figured out much of the lifestyle stuff on my own out of necessity and trial and error. I wonder about the lyrica....I had talked to a pain specialist a while back but he felt i was getting the same benifit from the amitriptyline so I didn't risk the change (stomach upset). Have any of you used amitriptyline and then changed to lyrica? thankd Sandra
Hi Sandra :)
Are you on a proton pump inhibitor of any kind? Our stomach acid tends to be more concentrated than thiose who can dilute with saliva and sometimes taking a PPI such as Omeprazole (UK name) can help other tablets go down easier.
The other thing is - have you been checked for H-pylori? They can cause reflux and gerd and general discomfort but are easy to banish if found.
The other thing about Amitriptyline is it can really dry you out so it's a case of getting a dose that helps - without it doing that.
Take care - Scottie :)
Hi Sanrda
I deal with the sjogrens, fibro, hashimotos, gerd, etc.
For me , I think it is most important to treat the Sjogren's. The underlying inflammation makes, everything else worse. If you can get that under control, the extreme allergies and sensitivities will diminish.
The most recent research also no longer puts much stock in the fibro tender points.
The doctors in the US no longer recommend continuous use of the proton pump inhibitors. they have found that it interferes with proper absorption of many meds as well as nutrients from food , especially vitamin d and b12, resulting in deficiencies in what is needed.
I always say that my body neglected to read the book. Therefore it cannot attribute one symptom to one disease. So when the docs ask whether the muscle pain is from , sjogren, hashimotos, or fibro I always say you tell me. that is usually the end of that.
There is nothing saying you only have to have one condition, nor that you can only treat one.
In sjogrens there are things that contribute to the fatigue, like androgen deficiency. Although it is well known, and the rheumies acknowledge it. but in this area , they do not treat it. Had to find a gyn willing to read the research i provided and willing to supervise and prescribe. it made a tremendous difference in energy and as a side effect in libido.
Also the b12 and vit d deficiency can markedly effect energy levels. and if the body is fighting inflammation, infection, etc -the body is using its energy to fight that. so addressing that can have a significant impact.
I have had another unusual response in that i test negative for herpes(shingles) but treating for herpes with Valtrex has over the course of 8 months almost eliminated my rash(which on biopsy is not herpes) and has also improved my energy level.
Not fact, but just my opinion, when the inflammation is under control my brain seems to work better, with far less fog.
All that being said , maintaining a balance can be very tricky , much like walking a tightrope, Stress no matter, good(family times, etc), bad(money shortage), physical (exertion), allergies, environment , etc, all destabilize me. and it takes a long time to recover.
www.sjogrens.netfirms.com (http://www.sjogrens.netfirms.com)
Sandra,
As you can see from the replies here, so much of this is individual. So may meds are trial and error because we are all so individual in our reactions to them and what dosage will work for us. I would have a discussion with your rheumy and GI doc about your symptoms and med reactions. There is no definitive test for Fibro like there is for some other disorders so testing the tender points and putting that together with other symptoms was all they had to make a determination. Lyrica works for many with Fibro but some will have side effects, like stomach upset or weight gain and others will do fine with it. Most have to start out with a low dose and work their way up.
I take Prilosec on a daily basis because my insurance won't cover any other med in that category. Without it the stomach pain and GERD would be too much for me. I have tried skipping a day and it can get pretty close to unbearable for me. It seems that lately it has been worse even with the med so I have had to add ranitidine on occasion.
I wish you luck finding a med that helps without trashing your GI tract. I hope you have a good GI doc that has done all the appropriate testing to see if there is something going on with your GI tract besides a sensitive stomach. Most important, don't get discourage or overwhelmed by all you read here. Remember, our individualism is what makes us so special. ;D
quiger
Yes I guess it will have to come from an expert if ever. I do take 40mg of losic per day and don't dare miss a day. I am currently studying reports by Dr I Jon Russell, who seems to be the formost expert on fibro. There is a wonderful report on the Fibromyalgia Canada web www.fm-cfs/fm.html click patients then Educational Material. There's everything from CF and FM Guidelines to CFS Psychiatry Guidelines......seems I'm not nuts after all! ;D Dr Russell is also the founder of the International Myopain Society another excellent site. They have a wonderful book section there even video's regarding fibro and how to exercise without exacerbating the pain. I have no doubt that Fibromyalgia and Chronic Fatigue are real. There is no way any report could be so bang on regarding what I deal with almost daily. And is often mentioned in the reports I have no doubt that they overlap with each other and with other auto immune illness.
If you get some time take a read it is very good, it includes diet and exercise issues, GI tract and bladder dysfunction issues, myofacial pain, and the debilatating fatigue and cognative problems and the sleep disruptions that often keep us in flares. I was taken back by the mention of "sensory overload" meaning noise, vision, bright light etc. It even mentions that many sufferers have difficulty taking full dose medication/prescriptions. Most of all it gives one a real good lesson on practical treatments, non-medicinal approaches. It just makes allot of good sense even if you "only" suffer sjs. Hope it helps. Sandra
Sandra, I think you left out the domain in the URL. Did you mean www.fm-cfs.ca/fm.html ?
Sorry, Yes, thanks. ;D
Interesting, today's Reuters news release on Fibromyalgia:
http://news.yahoo.com/s/nm/20081124/hl_nm/us_fibromyalgia_brain_1
Chico