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fibromyalgia/myofascial pain/ Sjogren's fibromyalgia/myofascial pain/ Sjogren's

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Unread 10-25-2004, 08:01 AM
fibromyalgia/myofascial pain/ Sjogren's

Hi Sisters
I am looking for help. For those of you who don't know my is the summary:

- endo / adenomyosis / frozen pelvis (adhesions)
- constant back pain for several years...becoming unbearable at the start of 2004
-hysterectomy in June 2004
- back pain still there (although other pelvic pain cured)

- Dr. M in August (sports medicine) x-rays, bone scan clear. Rheumatoid factor +, other blood tests lead Dr. M to think I may have Rheumatoid arthritis...given percocet for pain

- Dr. B in October (rheumatologist) NOT have rheumatoid arthritis, but likely have Sjogren's syndrome, which has nothing to do with BACK PAIN. No other workup was done relating to soft tissue pain....just examination of low back and other joints.

- back to square one. Pain increasing, not just low back anymore. Now....diffuse pain from neck down to tops of thighs, along with wrist and elbow on left side. Feels as though every muscle is screaming, tight and burning

- This to massage therapy. This therapist has been working with me for over 6 months trying to relieve pain. She tried a new therapy....myofascial release therapy, along with some deep massage of possible "trigger points" (her words not mine) Strange sensations including tingling of fingers (when she hit certain points in my shoulder area) Also, sharp pain in knee, while she hit points in my glutes.

Sweet mother of G-d did that feel great! As a matter of fact, 2 days later, I still feel looser than I usually do, and pain level is lower than usual.

I talked to a wonderful lady at work who is trying desperately to help me (she's a physiotherapist, who hooked me up with Dr. M). I asked her about Fibromyalgia and Chronic MyofasciAL PAIN, and she bluntly said that I was not in enough pain to have either of those problems.

Um....she also thinks that I only have pain in the S-I joints....that was my main concern at the beginning. Only recently have I started researching, and wondering if the pain throughout my body isn't SOFT TISSUE related, instead of BONE related. I know...I should explain all of the other pain to her. I just hate to be a bother. I feel so whiny all the time. Maybe I should just write down a list of all the symptoms that I do have, and give a copy to her and to Dr. M????

Sorry to be so long winded ladies, but I am looking for anyone with Fibro, or Myofascial pain who may want to share their experience with me. I am desperately looking for a it's always easier for me to fight against something that has a "name" Also, if anyone happens to have Sjogren's syndrome, please share your experience with me.

Thank you my divine Sisters.
Much love
and s
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Unread 10-25-2004, 11:30 AM
fibromyalgia/myofascial pain/ Sjogren's

Hi Tam I've moved your post over here to the Road Less Traveled board, where there have been several ladies posting with fibro or Sjogren's recently.

Also, there are some helpful links on these conditions as well as other autoimmune disorders over in our Resources directory, in the Road Less Traveled - Autoimmune Disorders section. To get there, just click on 'Resources' in the banner at the top of any page on this site, then scroll down and select the appropriate section.

I'm guessing from the fact that you had endo that you're not on HRT? I just wanted to mention that there is a hormone related component to all these disorders... and that estrogen often will improve things. Here are some more links with info you may find helpful:

I hope you get some answers soon.
Unread 10-25-2004, 05:09 PM
fibromyalgia/myofascial pain/ Sjogren's

Thank you Linda
I'll check out the links.

I still have my ovaries, so I am not on any HRT. Although I wonder if my ovaries are working properly due to the fact that I've started having hot flashes.

I'll also do a search here on the site for Sjogren's.

Many s
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Unread 10-28-2004, 09:30 PM
fibromyalgia/myofascial pain/ Sjogren's

Hi Tam,

I was diagnosed with fibromyalgia and Raynaud's syndrome and Ankylosing Spondylitis and all kinds of other things 17 years ago.

The general consensus now is that I only have fibromyalgia.

I've participated in a clinical research study that suggests that progesterone cream (despite the absence of menopausal symptoms) helps sufferrers.

I have been using the progesterone cream for about a year now on the elbows and knees, and it has seemed to help.

I've been taking trazadone to help with sleep for years now and taking anti-inflammatories to help with inflammation.

But the best thing I've found that helps is massage therapy. Your massage therapist who mentioned myo-fascial release and deep tissue therapies is on the right track. I never feel better than when I see the massage therapist regularly for months at a time.

I must admit that staying away from caffeine, eating yogurt and generally taking care of my body has no compare, but the massage therapist is a godsend.

Funnily enough, having a partial hysterectomy removing the uterus only has helped greatly. Maybe hormone related after all.

I wish you luck in finding the treatment or course of care that works for you. Sometimes having Fibromyalgia means taking on the world and searching for solutions. I hope your search is easy!
Unread 10-29-2004, 02:44 PM
fibromyalgia/myofascial pain/ Sjogren's

thank you so very much for the insight and kind words.

From what I've read, every FMS patient seems to need a little bit different treatment. I guess it's just trial and error until you find what works for you.

When I do finally get a diagnosis, I'll be sure to post back here. I hope you don't mind if I send you a pm if I have questions.

Many s
and pain free days!

Unread 11-02-2004, 09:38 AM
fibromyalagia/ ovary dangling???

Hi I just found out yesterday that what I have been dealing with is fibromyalagia..... I for years have been told I might have lupus or ra but finally the doc said fibromyalagia and while looking on the internet I think that is it.... I have all the symptoms and have had for years...

had pelvic exam yesterday also and doc said my ovary that is left is suspended and dangling going for a ultra sound today?? has anyone had that happen after hysterectomy? it has been 2 years/
Unread 11-02-2004, 02:45 PM
fibromyalgia/myofascial pain/ Sjogren's

Hang in there, it sometimes takes a while to get a correct diagnosis.

I would talk to your rhuem. again, he is the most likely dr. to be treating you if you have fibro. Part of the diagnosis is mostly ruling out other possibilities like thyroid problems. Part of it is also that the problems have been documented for at least 3 or 6 months, I forget which.

I was diagnosed with fibro 3 years ago, 10 years after I was diagnosed with CMP in my lower back and glutes.

Accoding to my doc, the best weapon you can have is information. He steered me to a few places, but the best info IMHO is from the Arthritis Foundation.

There are several other ladies on the board that also have fibro. According to my dr. the surgery from having a hyst can also be a trigger because it's not uncommon to develop fibro afterwards.

Unread 11-02-2004, 09:33 PM
fibromyalgia/myofascial pain/ Sjogren's

thanks for the reply
I am not sure if that is what it is but it would be nice to be able to put a name to it...I have been going to docs for 2 years and they have not been able to figure it out... I live in a small town and all the docs are family practioners...It is really frustrating...

as for the ovary had the ultra sound today and I have multiple cysts ...that is all she would tell me,but she wanted me to say there until she got hold of my doctor,but he was gone...find out tomorrow I guess..
Unread 11-29-2004, 08:29 PM

Hi Tam and all!
I hope you're all still about -- I just joined today to see if any other hyster-sisters were diagnosed with autoimmune diseases after having a hyst.

I recovered from my hyst. pretty well! But about eight months afterward, I was bedridden with a high fever and the most intense body aches I'd ever had. I thought it was the flu and tried to ride it out but I ended up going to a doctor. The flu was hitting big-time and he figured that's what it was.

The pain never fully went away, but I was able to get around again after several days. Then, it all hit hard again. Went back to the doctor -- flu. Same cycle.

When it happened the third time, we knew something was really wrong. I was tested for mononucleosis, Lyme disease and strep -- all negative. My doctor suspected Rheumatoid Arthritis and Lupus, so he did some simple blood tests and he was really surprised when they came back negative.

I was then sent to a rheumatologist and he did a complete blood workup. The Rheumatoid Factor turned up positive, as did other tests for inflammation and two of the Lupus tests. He did a very thorough physical exam and seemed to know EXACTLY where I hurt the most. He said they were fibro trigger points.

So, right now, my diagnosis is definitely Rheumatoid Arthritis, Fibromyalgia and Osteoporosis (I'm only 39!). We're still not sure about Lupus since half of the Lupus panel tests are coming back strongly positive and the other half are negative. My doctor said he finds it very interesting that all of this came on shortly after my hyst. and he says he's been watching for a hormone connection.

I'm taking Plaquenil, folic acid and supplements every day, with weekly injections of Methotrexate (an anti-cancer drug used for RA and Lupus). I'm going to start injections of Enbrel shortly -- it's been ordered. I still ache and have some bad days, but it's not nearly as bad as it was before.

The rapid deterioration of my hands, ankles and knees has been scary -- my fingers are already becoming crooked and I can't straighten them out. It didn't take long for my larger joints to become involved, too.

Diagnosing these diseases can be time-consuming, but I strongly urge those who have the symptoms to keep on it. The tell-tale signs of RA are bad pain in the hands that is present every morning and lasts at least an hour every day, plus symmetry of pain -- the joints on each side are affected, although they may not both hurt at the same time every day. Keeping track of the type and severity of pain is really important so the doctor has a record -- sometimes all of the symptoms are present but it doesn't yet show up in the bloodwork. That's called sero-negative RA.

I was just diagnosed seven months ago, so I'm far from expert at all of this but if anyone wants to talk about it all, I'll be happy to help with what I know.

Blessings all around!
Unread 11-29-2004, 09:29 PM
Just diagnosed with fibro too.

Its been almost 2 years since my hysterectomy and I was diagnosed at the beginning of this month, with probable fibromyalgia, she did a quick trigger point test and asked some other questions. I was also diagnosed last year with Celiac's(gluten intolerance)

The doctor is doing a few more rule out tests before she sends me to a rheumatologist.

I'm definately going to try massage therapy.


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