A year of pain and finally an answer! (long)
 

Hi, everyone.

I have RSD of the left leg since 2003. Even though I was dx early, the LSB's and edpidurals did not work for me. I walk with a cane but have managed fairly well until early this year.

Back in February I hurt my left shoulder and it seemed to never heal. Then in early Summer my right leg became swollen and horribly painful — I could not walk at all some days. My doctor ordered a bone scan which showed hot spots in both my ankles, both knees, both hips, low back and both shoulders. An MRI showed that I have developed arthritis in my right knee. My doctor kept adjusting my medications to try and deal with my increasing pain levels.

Well, 2 months ago I injured my right shoulder when I lost my balance and over-extended my arm when reaching out to stop my fall. Now both shoulders are so painful that I sometimes can't lift my arms over my head. I am in unbearable pain all over and quickly reaching the end of my rope! I was worried that the RSD was spreading.

Well... I just met with my pain specialist, who is a well-known and respected Canadian doctor who speaks regularly about RSD. He has not, in his long practice, seen a patient with all the necessary symptoms to support a diagnosis of RSD "spreading" — i.e. swelling, discoloration, etc. Rather than a "spread" occuring, he finds that many patients develop other muscle or joint conditions that when added to their RSD diagnosis often lead to more pain and disability.

We reviewed my records: I have osteoporosis and RSD in my left leg, arthritis in my right knee, and my abnormal gait has affected my spine which contributes to the hip and low back pain. He increased the Codein Contin to 300 mg, Duragesic to 150 mcg/h, and added Nortriptyline at 100 mg. No change to Effexor at 150mg, Arthrotec at 75 mg, Tylenol 4 for BT, and I am to continue taking Glucosamine, Calcium and Vitamin D.

NOW MY QUESTION....

Additionally, he diagnosed me with a condition known as muscle-fascial pain syndrome in both shoulders. He has referred me back to my family doctor to discuss a treatment plan but I don't have an appointment until mid January. I've done some initial web research but would very much like to hear from someone who also has this pain syndrome(?)

Cheers,
Catherine

Hi Catherine,

Sad to say I've never heard of it. I googled it and got one website only, in garbled Russian. So I'm non the wiser.

It's not Myofascial Pain Syndrome, is it? The info I found on this site: http://72.14.235.104/search?q=cache:...d=3&lr=lang_en
sounded like it could be.

Useless, aren't I!! Hope there's someone here who can help more...
all the best,

I was thinking the same thing- is it a different name for myofascial pain.
http://www.drkochno.com/shoulder_in_sports.htm
http://www.drkochno.com/shoulder.htm

some other myofascial pain links-
http://www.medicineau.net.au/clinica...5.html#anchor4
http://www.emedicine.com/pmr/topic84.htm
http://www.sover.net/~devstar/
http://www2.rpa.net/~lrandall/index.html

Many with TOS have had a bad fall with outstretched arm and strain injury.
a few links to compare/check your sx-
TOS info:
http://www.nismat.org/ptcor/thoracic_outlet/
http://tos-syndrome.com/newpage12.htm
http://tos-syndrome.com
http://www.acofp.org/member_publications/thoracic.htm
http://www.cwce.com/feinbergarticles/tos.htm
http://www.doctorellis.com

If it fits more here-
http://neurotalk.psychcentral.com/forumdisplay.php?f=24

have you considered an expert chiropractor?
{that will do other PT type therapies for you also?
Mine seems to be very good with many therapies and very gentle too- no yanking or vigorous adjustments.
chiro links -
Chiropractic care info- a good one can help with many symptoms:
http://www.upcspine.com/self.htm
http://www.uppercervical.org/subpag...b/about_faq.php
http://www.spineuniverse.com/index.html
http://www.coloradochiropractic.org/.../glossary.html


I think quite a few on the TOS forum do have real spreading of RSD sx- swelling , colorations, burning , stinging, extreme sensitivities.
Most likely the same here on this forum too.

Catherine, you have certainly had a time of it I see. A few of my doctors have used the word myofascial with me also. Perhaps that is what your doctor means.

On top of what I knew i had other than rsd, I have had some more things diagnosed too, amongst which is oseteoarthritis and some spinal issues. Just recently I had a bone scan head to toe and am waiting for those results.

I probably would have had some of the diagnoses earlier, however, i dismissed some of the symptoms too easily to rsd. An example would be the burning, tingling, numbness in three limbs. After reaching a point where i could not "manage" them I went off to see a neurologist and asked for an mri. That's how I found out about the spinal cord compression.

I share this here now only because sometimes symptoms can overlap diagnoses and some of what i now know was dismissed by a few doctors as due to fibro or rsd etc. Maybe someone else can avoid non diagnosis, too, I don't know. I still have the rsd lol.

Take care,
Ina

Myofascial and muscle fascial are the same thing. I asked my Dr. and he said some docs say one, some the other. Then again he is Canadian so maybe he just didn't want to offend anyone.LOL:Dunno:

Good morning!

Thank you all for your replies.

Trix, thanks for confirming that muscle-fascial and myofascial are the same thing. I wasn't sure when I was searching the internet and came across both terms.

Artist, I had a good chuckle when reading the joke included at the end of the medical info on the MPS link you provided. :D It was a pleasant way to start my day!

Carousel, I hope your bone scan results turn out well for you. I'm grateful that you shared your situation with me and others.

Jo55, I really appreciate all the links you provided and I'll be sure to go through each one. I will definitely ask about chiropractic treatment when I see my doc in January.

Cheers,
Catherine

Thanks Catherine,

I'm thinking they will find something as I've been batting a hundred percent in returns from tests i have insisted on during the last year.

On the other hand maybe I will get a break from all this and hear nothing more than ordinary stuff for my age lol...

It's been a crazy year.... don't even want to think about it.



Stay well,
Ina