[68RN]

I have ankylosing spondylitis and fibromyalgia. I was sent to a PT for right shoulder and right buttocks pain. I do not think my Rheumy's office sent much info over or even that I had fibro, and the private clinic took no history or medication list. Usually before when I go to PT, I fill out a lengthy form.
Things started out ok, alot of hard pressure to all areas of back and shoulder area. And I mean hard. I am sure it was trigger point release. After a few times I mentioned I had fibromyalgia, and asked if my doc had sent over any info on me? Her reply was "a little" What is that supposed to mean.
After the rough massage, she would do some ultrasound and then out to the mats to to more exercises and sometimes I would ride the bicycle for 5 minutes.
I would go home and go to bed. This continued from March till May when I could take it no more. I would almost scream on the table where she was pressing so hard. She was irritating musscles I had not used in ages and I began developing SOB and pains and fatigue. I was literally in a flare most of the summer. I kept doing it thinking i would get better. she got in my face one day on the mat and chastized me for not doing the daily exercises, if I wanted to get my strength up. I think I scared her when I reported I was having SOB and she let me go one day after my massage.
I was laid up till middle of August. When I told the NP at my rheumatologists office about the massage, her only comment was "some do not respond".
and she was the one who highly recommended this gal. I also mentioned to my internist if a small clot could have broken loose when she did that excruciating massage to my upper back muscles and he really had no comment. It is like do not
shovel snow if you are not conditioned and it was still exercise just painful passive.
I never returned and think I will go and talk to the owner of the clinic who is also a PT, My internist did write out on a PX pad that I had fibromyalgia and wrote down his recommendations for therapy for next time. I am scare to go anywhere else. Where do you find a PT that is knowledgeble in fibro, or I would be happy to just go and have a gentle massage somewhere. What action would you all take?? Thanks for reading this. 68RN

[massageRN]

Because fibromyalgia patients live in pain and lack the neuro- transmitters to block some of the pain transmission , these patients are extremely hypersensitive and very easy to overtreat. Trigger point therapy may be inappropriate in this instance. Gentle massage however is so in your case to get rid of toxins and relax muscles gentle techniques such as Swedish effleurage and lymphatic drainage are wonderful to try. Please know that massage therapists certify and specialize just as nurses do in their areas so it may be best to find a therapist who has done further study in fibromyalgia. While the PT you went to has knowledge of muscles and recovery she/he however provided you with an inapproprate treatment of which I hope you will consider trying an experienced massage therapist for your condition. Ankylosing spondylitis sometimes goes along with fibro as they are both considered autoimmune disorders, however less is understood about ankylosing spondylitis. Massage also must be gentle and proceed with caution and not reccommended if the spinal joints are inflamed as during a flair up. Light effluerage is ok. Massage is most effective in the early stages of this disease as it does help preserve the mobility of the spine. Again PT and all the jostling around not an appropriate treatment. If you would like to exercise stay with tai chi or light yoga stretching or even a favorite of mine qi gong. MassageRN

[massageRN]

Here is the website for a great article on fibromyalgia and massage:
http://www.massageandbodywork.com/Ar...bromyalgia.pdf

[68RN]

Dear Massage RN,

Thank you so much for responding to my question and validating what I felt all along. you were very kind to suggest some treatments and I will call around and find a massage therapist who specializes in fibromyalgia. It seems like all kinds of info on fibro is just coming out of the walls of late and we will all be validated some day. Luckily, I have an internist who firmly believes and is knowledgable about fibromyalgia and the latest research. I had to retire 4 years ago on disability and it was after nearly 9 years I was finally diagnosed with AS and am on methotrexate and Remicade. The pain I endured and the looks I got at the er at my own hospital really made me begin to doubt myself, but I swallowed my pride and kept on changing docs and doing whatever needed to be done to get a diagnosis. I knew something was not right with my body and all along had a heavy charge nurse position in inpatient rehab. I do believe God gave me this challenge to learn to stick up for myself, I could my family and patients, but for myself it was so hard. Guess that is the way it is for alot of caretakers!! Thanks again for caring and responding. I wish you lived closer, I bet you are a great nurse and massage therapist. Sincerely, 68RN