Is the pain we experience with Sjögren's usually diagnosed as Fibromyalgia?

[anita]

Mat,

Can you describe the pain...in detail?  Is it burning, shooting, stabbing, aching, etc?  Does it hurt to touch fabrics on your skin (like slacks, socks, shirts etc)?  Is there are skin discoloration...redness?  What about swelling?

Where exactly is the pain...bottom of your feet or legs in general (full length of legs).  Does it run down the back of your legs?  Does it include your hands/arms?  What about your face///is it the same type of pain as your feet/legs?

Does the pain come and go, or there all the time?  is it worse in the evenings...especially after walking during the day.

Have you tried any topicals...like biofreeze, Salanpas, Capsaicin, or lidoderm patches?  What about cool baths/soaks (if it's a burning pain)?

[irish]

My gut tells me that it would still be a good idea to have a psych consult if one is having the probable diagnosis of autoimmune/sjogrens with the pain that might be diagnosed as fibromyalgia. At least at some point it might be wise to have psych eval to help sort out what all is going on.

The Sjogrens patients are extremely apt to suffer from depression and anxiety and the pain of fibro is often treated with antidepressants. Then there is the fact that chronic health problem patients are extremely prone to depression and anxiety. It seems that it would be wise to have help sorting all the issues out as the antidepressants are quite likely to be needed at some point. Then there is the insomnia that comes with chronic illness and autoimmune disease that needs to addressed.

It would be a shame to allow someone to have unnecessary pain and suffering when there are meds that could provide more comfort. I am in favor of psych consults also because of the fact that most doctors don't know enough about antidepressant drugs. Every drug provides the replentishing of specific brain chemicals and it takes knowledge to work with these drugs. Irish

[aussie mum]

I'm sick of living with pain 

[irish]

I don't blame you, but I don't know what to tell you to do about it. Have you seen all the doctors, etc and have they made as effort t find medication that would help. Do hot or cold packs help any? I would give you a hug if I was with you. Please take care. Irish

[aussie mum]

Thanks Irish..

I am being treated with a biologic for my Ankylosing Spondylitis but I don't have a definitive diagnosis for my muscle pain. I think my Rheumy was hoping the biologic would magically help everything, gosh it doesn't even completely help with the AS - but I am better on it. A short burst on Prednisone a few years back took away most of the muscle pain too so I gather it's not Fibro. The sports physician who initially referred me to the Rheumy thought I might have Polymyalgia but the AS diagnosis sort of took over the Rheumy's train of thought.

All I know is it hurts and sometimes it overwhelms me.

I do find heat helps and if I smother myself in heat rub creams, that helps too, even if I do smell like an over 40's football team.

I'm currently suffering from vertigo - my head is taking trips that I really don't want to be a part of - my GP thinks it's Benign Positional Vertigo, so I'm off to the physio next week.
Once that is sorted I will try and get answers for the muscle pain. It's just so hard sometimes.... 

[anita]

Aussie Mom,

If the steroids take away the pain, then it must be inflammatory based.  That alone, should help doctors know where to look for the source...and then treatment.  Sadly though, inflammation is commonly treated with steroids.  But NSAIDS can help too in many cases.  Have you tried something as simple as Motrin (an NSAID)?  If it helps even a little, it might give you a direction to follow.

If the muscle pain includes any muscle wasting, then a muscle biopsy should be considered.  They should also be checking your CPK level (muscle enzyme) to see if it is normal.

[irish]

Then to make the muscle pain a simple thing,(yeah right) it could be just muscle pain from the Sjogrens. One can have muscle pain for a while and then it will go away. I have spent a lot of the last 1 1/2 years with muscle and tendon pain and it seems to sort of impact my life a lot as far as what I can do. However, it is not horrible and responds to inactivity and heat and Tylenol. I can't take NSAIDS cause I taker prednisone.

Like mentioned, your muscle pain is improved with prednisone so it probably is autoimmume based. Do you have trouble with your joints?? My finger joints are affected but I have osteoarthritis so who knows!!! Never find the answer to a lot of the stuff we have. The muscle inflammation is called myositis and can have several different causes. Maybe ask your doc to gave testing for this. I had a muscle biopsy years ago and they don't seem to rush into those until they exhaust everything.

I think that some of my muscle issues could be from my myasthenia gravis. Do you have any muscle loss?? I have lost muscle in several places and this is part of my myasthenia. Good luck. Irish

[sixty]

I wonder if any of you have connective tissue pain?  My physical therapist told me the pain in my thighs and hips was due to connective tissue that had separated from where it originated.  He worked on breaking it up to alleviate pain issues.  Have any of you experienced this sort of situation?

[Linda196]

Connective tissue is a broad term for a lot of different tissues, including tendons and ligaments, but also the bone itself, its covering (periosteum), the gel like matrix that surrounds the organs, muscle and bones, and even the dermis layer of the skin.

Your therapist may have been focusing more on the actual connecting tissue like tendons and ligaments and the locations where they attach to the bone, the entheses.

Enthesitis is inflammation of the entheses, the sites where tendons or ligaments insert into the bone and is possibly misdiagnosed as tendonitis. it's probably fairly common, but bundled in with a diagnosis of tendonitis for several reasons, not the least of which is that doctors realize people recognise tendonitis, but enthesitis would be a new and possibly frightening term.

[irish]

Sjogrens is a autoimmune connective tissue disease so that does make sense. The connective tissue involves more than muscle. An easy way to think of connective tissue is that it is the "glue" or tissue that holds things together. The tendons are involved, etc list goes on. This is why we have so many migrating body pains. Everything is affected at one time or another. Irish

[MAT51]

Since I posted this there have been a few replies that I've only just read. Very interesting all. On balance I relate to Jasper's take on this. I think that, no matter how confident QuiteDynamics personally feels about Fibromyalgia as a separate entity (and I can similarly tell when my Hashimoto's is not well controlled) the risk is too great to allow doctors to reach this conclusion in the form of a diagnosis. I personally can't see it as a seperate disease or condition in its own right.

In the U.K we have just had the second episode of a second BBC series of programmes called "Doctor in the House". This doctor goes and stays in the households of people suffering from serious,  longstanding conditions or symptoms such as cluster headaches and severe anxiety disorder. Tonight there was a man who doesn't sleep and feels as if he's wading through treacle everyday - despite having a very healthy lifestyle. This has gone on for 20 years with no doctor being prepared to investigate him thoroughly because he looks well. Finally his Homostecine shows up to our doctor at almost 35 - the highest reading he's ever seen. It turns out to be a genetic fault leading to poor B vitamin absorption - particularly vitamin B12. Within days of taking a whopping amount of B complex with folic he's feeling fantastic. His next Homostecine reading, after only a week, is 7! This 30 year old  man could have died of a stroke or heart attack while doctors were telling him that he had CFS or similar. This happens with every case he tackles - even if the cause is early trauma. 

So I feel that rheumatologists use Fibromyalgia as a catch all term for a type of pain no one has yet entirely understood - much as they do with IBS and Functional Neurological Disorder. If they had time and inclination to look hard enough they would find a cause for this pain I'm sure. In the words of Einstein "all truths are easy to understand once they are discovered. The point is to discover them".

So if Fibromyalgia exists as a physical entity as you say then let them make this much clearer to those they diagnose. They need to use diagnostic criteria that can be relied on such as brain MRIs. Otherwise, as Dr Birnbaum makes clear, the risk of failing to identify a physiological cause of a person's pain is a failing on the part of doctor. The risk of not discovering a serious underlying process is just too high.

[MAT51]

Mat,

Can you describe the pain...in detail?  Is it burning, shooting, stabbing, aching, etc?  Does it hurt to touch fabrics on your skin (like slacks, socks, shirts etc)?  Is there are skin discoloration...redness?  What about swelling?

Where exactly is the pain...bottom of your feet or legs in general (full length of legs).  Does it run down the back of your legs?  Does it include your hands/arms?  What about your face///is it the same type of pain as your feet/legs?

Does the pain come and go, or there all the time?  is it worse in the evenings...especially after walking during the day.

Have you tried any topicals...like biofreeze, Salanpas, Capsaicin, or lidoderm patches?  What about cool baths/soaks (if it's a burning pain)?

Hi Anita - sorry to come late to this question but no e-alert so I've only just read it. I'm not that bewildered by my own pain anymore and yes I can manage it most of the time with Biofreeze and hot cold soaks, eating only very healthy foods and getting enough sleep. It is SFN with secondary Raynauds, I'm quite sure. I can't prove the SFN yet through skin biopsy because my neuro won't do this but it is being monitored by my rheumatolgist and it corresponds entirely with what you and others describe.

Recently it has flared again and my inflammatory markers have gone right up with the pain. It is very defuse but worse affected are my feet and legs up to my thighs and my gums and lips and finger tips (also Pompholyx eczema and Raynauds). I get a deep bone ache with it too but it is not really affecting my muscles - although the rheumy disagreed and took blood for Polymyositis when I described the shin and knee pain. It is mostly bilateral but sometimes one arm or leg or hand has sharp shorting pain occurring throughout the day or I get a shooting pain in one ear.

The Sildenafil (Viagra) has helped my circulation and the pain I think but I can only just tolerate the very lowest dose and it could just be coincidence and perhaps the latest flare was waning a bit anyway. Also the weather is improving. I'm also on a slightly raised dose of my BP med, Losartan, and this might be helping too. When the 24/7 pain flares finally remit I'm always left with some loss of sensation and the disequilbrium returns to haunt me. But it is preferable to the awful pain at least. I think it's the painful parasthesia in my gums and lips that bother me most a lot of the time - I don't think this ever goes away. Tendinitis is also flaring a bit just now but again, this is the connective tissue side of Sjögren's for me so it's a known quantity.

But thanks to you great people here I understand a lot more about the neuro processes involved and know it's part of my Sjögren's now and this helps enormously. I'm due to move up to the maximum Cellcept soon as my liver has now settled down again. Just waiting for the rheumy's clinical letter to reach my GP so she can prescribe the increased dose. I'll let you know how I get on. X

[Deb 27]

I was given a diagnosis of fibromyalgia way before I had any dryness. I had many of the 18 trigger points, poor sleep, fatigue and pain. It is an official diagnosis and has FDA approved medications for it. I still seem to have it sometimes.   Maybe it's jut part of this disease or  low thyroid or something else. Who knows what causes the symptoms??  I just wish this darn thing would go away. It's worse than the dryness.

[MAT51]

Sorry you are in such pain. No one has ever prodded the Fibro trigger points on me but I'm guessing they would be tender because Sjogrens causes tenderness around my body including my tendons. It is a connector tissue disease after all. In my case they call it small fibre neuropathy and the FDA approved drugs are same ones as used to treat anxiety disorders and epilepsy, so very non specific usage - basically pain medications rather than disease modifiers. Have they tried you on steroids or disease modifying drugs at all and if so, have these helped? I get fatigue and sleep poorly and so on too but this is part of an inflammatory process and for many with Sjogrens it goes untreated it seems. If they can establish the cause of our pain then they should be able to target it at source and this should reduce the pain - in theory anyway.

[Pepita933]

You know when you go to a new :doctor you have to tell them your history.  I told a new Opthomologist that I had Sjogrens and fibromyalgia. To which he yelled at me "They are the same thing". I told my Rhumatologist this and she said, they just don't know.  Rhumatology is 2 years longer in schooling than most of the other doctors and they don't understand the difference.  If doctors don't get it, other medical professionals don't get it either.