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Old 06-02-2011, 09:48 PM   #1
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Fibromyalgia or generalized soft tissue rheumatism?

Hello all, I'm new to the boards and have a question which you've probably seen about 100 times but hoping for some answers anyhow

My rheumatologist and family doctor have diagnosed me with generalized soft tissue rheumatism. They insist that this is not fibromyalgia however, so much of my online research tells me that they are the same disease. The pharmacist tells me I have fibromyalgia and a couple of nurses have also told me that that is what I have. Apparently I have a good deal of the symptoms and am almost always in severe pain throughout my body. The only thing is that I do not meet the criteria of having pain in all the "pressure points". Some articles I've read say that the "pressure point" idea is an old way of thinking. I'm so confused. I guess it doesn't really matter but I'd like to wrap my head around this and try to understand what it is that I do have.

Any replies are appreciated. Thanks!

 
Old 06-05-2011, 01:01 PM   #2
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Re: Fibromyalgia or generalized soft tissue rheumatism?

This is why I hate message boards.

80 views and not one reply... even if no one has an answer. It's obvious I'm new and reaching out. Any kind of response would've been welcome.

Don't worry, I'm not expecting a response now and think I'll stick with my rl support group. I was just hoping someone here knew the answer as I"ve searched the web extensively and am still confused.

It might be an idea for when a newb posts something for even one or two people to answer.

Wish you all good luck and hopefully one day a cure is found for us all.

ciao

 
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Old 06-05-2011, 02:24 PM   #3
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Sorry I didn't respond earlier--been having a lot of numbness in the fingers, so I can't reply to everything.

Basically, rheumatism=swelling. Soft tissue rheumatism would be an inflammatory disorder, most likely autoimmune. Treatments would focus on controlling the inflammation, and there would probably be signs of it in blood work.

 
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Old 06-05-2011, 02:53 PM   #4
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Hi Gingerell and welcome - this is a great board and people will always respond - maybe not straight away - I haven't got a straight answer for you as I was one of the few who was immediately diagnosed with fibro - I didn't have tenderness in all the pressure points - I think it was in 11. And you're right there's different views on this these days. Is there anything in your bloods to suggest soft tissue rheumatism as Jane suggested?
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Old 06-05-2011, 05:40 PM   #5
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Thank you ladies for replying.

My apologies if I sounded like I was whining... these chronic conditions can really get to us all, I know. Sometimes I'm not at my best.

I have a lot of the symptoms of fm but I do not have all of the "pressure points". I've had lots of blood work done and all kinds of tests. I've so many bottles of prescribed meds that I've been put on and taken off lol. So, I do not have RA, lupus, MS or anything like that. Really, nothing has shown up in my bloodwork and I do not have swelling in any joints. My pain tends to go up my legs as well as in my hands, wrists and up my arms and that is on a normal day.

On a bad day, it hits my toes, ankles, up my legs, deep into my knees and up my legs to my hips. It's in all my fingers, hands, wrists, up my arms to my elbows and then up my arms and in my shoulders.

It's also in my lower back and in my shoulders and neck. My Reumatologist said that I probably have osteoarthritis in my neck/shoulders and hands. Apart from that, he says I have generalized soft tissue rheumatism. Half the literature I read says that that is the same as fm and the other half of what I read says it isn't. So, I don't know...

The pain can be so severe, driving me to tears and depression. I've been off work since September. The only meds that help are percocet and cymbalta. Unfortunately, they both come with side effects, esp the cymbalta. So, even on "good days", I don't feel great.

So, that's my story. No matter what it's called, it sucks lol.

Again, thanks for your replies, it is much appreciated

 
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Old 06-05-2011, 05:58 PM   #6
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Gingerell, Welcome to the boards I guess! There are a lot of good people here and if they had the time or the answers I am sure they would have replied to your post sooner. I personally don't think you have Fibro alone. I think you need to be re-tested to see just what kind of arthritus (sp) you have because that is what I think your problem is. I think you may have RA as well as Fibro. I have some swelling in my fingers w/stiffness and have osteoarthritis in my knee but unfortunatly can't take anti-inflamatories (sp) again lol!! I have Barret's Esophogus so can't take that stuff. Oh well. I would keep looking for answers from a different Rhuemy, re-test, re-coup and maybe things will fall into place for you. I would take the meds prescribed to treat the symptoms and see what another Doc has to say. Good luck, God Speed.
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Old 06-06-2011, 12:57 PM   #7
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Quote:
Originally Posted by Gingerell View Post
This is why I hate message boards.

80 views and not one reply... even if no one has an answer. It's obvious I'm new and reaching out. Any kind of response would've been welcome.

Don't worry, I'm not expecting a response now and think I'll stick with my rl support group. I was just hoping someone here knew the answer as I"ve searched the web extensively and am still confused.

It might be an idea for when a newb posts something for even one or two people to answer.

Wish you all good luck and hopefully one day a cure is found for us all.

ciao
I just found this site. Can't help you with your question. I do have pressure point tenderness, but my problem seems to be inflammation of the muscles in my arms, chest, thighs. Trying to get an answer. I'm seeing a neurologist in 3 weeks. have you seen one yet?

 
Old 08-11-2011, 02:54 PM   #8
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Sorry for the late reply and I appreciate everyone's posts a lot! I'd forgotten where I'd written my password down and finally came across it the other day. I just love all the meds ... great for pain but sure puts my brain in a fog sometimes lol.

I've seen my regular family doctor plus a rheumatologist. I've been to the same rheumatologist 3x. I'm currently on a waiting list to see a neurologist at a pain management clinic but apparently the waiting list is up to a year!!

Anyhow, I really have very little swelling or visible inflammation. My fingers become a little swollen sometimes but otherwise, I look just fine from the outside. I've tried many, many anti-inflammatories and various fm meds but none were too helpful. Right now I'm on cymbalta, morphine and a sleeping pill for evenings.

I don't have all the pressure points that I'm supposed to have but any pressure or pushing anywhere up my arms and legs hurts a fair bit.

The best diagnosis they've come up with is generalized, non-articular soft tissue rheumatism together with osteoarthritis in neck & back, hands and probably my knees.

Grannyrobin - did you see the rheumatologist? Any diagnosis? Hope the pain isn't too bad.

 
Old 08-12-2011, 05:41 AM   #9
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Good morning, so sorry you are feeling so awful. I dont' know anything about soft tissue rheumatism, but regardless of what it's called, the bottom line is that you dont feel well. Are the treatments for that the same as for fibro? I don't care what it's called, you need to feel well, or at least better. I hope you find something that works for and that you get a name for this. I know for me, that meant alot. I felt awful for so long and needed to have a name for it. Good luck in your searching.

 
Old 08-12-2011, 06:56 AM   #10
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Gingerell, the way you described your pains are exactly the same kind of pains I have, you described them perfectly well. I suffer from Fibromyalgia and my rheumatologist(s) explained to me that Fibromyalgia is rheumatism of the soft tissues. It does not degenerate the joints, and therefore has no inflammation at all. If you had inflammation in your blood of any kind, then it would show in your blood work, and then your disease would not be called fibromyalgia/rheumatism of the soft tissues anymore. I understood that you have done all the blood work and that nothing at all indicated any inflammation right? well, then I think that what you have is actually fibromyalgia. Is the Cymbalta working for you ? have you been taking it for a long time? I tried it for one day and then the next day I woke up in such a bad shape that I thought if I continue I would even lose my job. So to summarize your case sounds like a fibromyalgia case to me, please see another rheumatologist and also make sure that your blood work is ok.

 
Old 08-12-2011, 07:32 PM   #11
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Re: Fibromyalgia or generalized soft tissue rheumatism?

Quote:
Originally Posted by janewhite1 View Post

Basically, rheumatism=swelling. Soft tissue rheumatism would be an inflammatory disorder, most likely autoimmune. Treatments would focus on controlling the inflammation, and there would probably be signs of it in blood work.
Now this is interesting my blood tests indicate swelling (high sed rate), my C3C, C4C test indicate that I have some sort of Autoimmune disorder, and my ANA is positive 1:80 which is low but still something. and they are positive I have Fibro.

Its only been about 6 months diagnosed for me.

 
Old 08-13-2011, 11:54 AM   #12
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Re: Fibromyalgia or generalized soft tissue rheumatism?

I just got on today and saw your post and I was interested because I have never heard of soft tissue rheumatism. I do not have the usual trigger points either and when I went to my pain doc and showed him where it hurts on both my elbows-he said FM trigger points are 2 inches lower! Anyway I am sorry people did not answer your post-it does sometimes take a while-but they usually come thru.

 
Old 08-13-2011, 06:59 PM   #13
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Re: Fibromyalgia or generalized soft tissue rheumatism?

My rheumy gave me a diagnosis of connective tissue disease. I have the same thing with all my joints, pain and taking anti inflammatories works for me. However none of my blood work indicates an inflammatory process is going on. I also do not have the swelling joints like some do. Go figure, I just insist the docs treat me for my symptoms even if they can't figure out what to call it.

 
Old 08-15-2011, 10:35 PM   #14
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Re: Fibromyalgia or generalized soft tissue rheumatism?

I would look into central sensitization syndrome also. It is very similar, and some people/docs think it is what causes Fibro and a host of other issues.

I have all over pain.

What I did was go to a massage therapist. Guess what?I had knots everywhere- head to toe. No joke EVERYWHERE you can think of, not even exaggerating. Myofascial pain... but it does not go away because of sensitization. I also have sensitivity to light, noise, touch (all over body pain). Basically my body does not process pain signals correctly and is in a constant sense or urgency/flight.

This all started happening to me after I was in SEVERE uncontrolled (docs thought I was nuts!) lower back/pelvic pain. Well it got really bad last year, and then I was finally diagnosed with a spinal cord issue. But the sensitization kept getting worse. I was even tested for MS, because I had every single symptom. Everything came back clear, but I was diagnosed with sensitization, I only have a couple of tender points, I also had horrible joint pain. I take Savella now and that has helped with some symptoms,but I am looking for a solution...

 
Old 08-16-2011, 11:43 AM   #15
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Re: Fibromyalgia or generalized soft tissue rheumatism?

How do you find a legit therapist-I got a coupon from a place years ago and it was all Chinese girls and nothing but male customers.

 
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