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advice please with Fibromyalgia!!

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Fibromyalgia
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Posted 2/11/2012 10:29 AM (GMT 0)
Hi all, I am pretty new to the Fibromyalgia Forum, but go on the Ostomies and Depression forum quite often.

I was diagnosed with Scleroderma and Fibromyalgia in 2007, and am currently seeing multiple specialists. I haven't really been bothered to look into Fibromyalgia, as I have had a lot going on with Scleroderma issues. I had an Ileostomy last year, due to Colonic Inertia, caused by the Scleroderma, and have problems with my heart, lungs (which I hope all is stable), and joint issues, arthritis. I have quite a lot of stiffness, especially in pelvis, achilles tendons- bilateral, calves, ankles, and not much movement in lifting legs, but can walk, just have trouble getting up from the floor and kneeling. Recently, I now have stiffness and pain in the neck, going down into the shoulders, collar bones and pain shooting up into my head.

I am seeing a physio weekly and am doing stretching exercises and she massages the area of the neck, shoulders and up to the head. She seems to think it is the Fibromyalgia, but am going to have an xray to see if there is any degenerative issues going on.

I don't like taking pain medication, but try and make throughout the day, then medicate in the evenings, when I need to.

Because of the arthritis and joint stiffness, I am not sure what tis the culprit, Scleroderma or Fibromyalgia, or probably both. I am extremely tender all over my body, but this neck problem, I am finding it hard to deal with. I can put up with joint, arthritis problems anywhere on my body, but the neck thing is getting me down.

I am just wondering, what you all are taking besides pain medication to help you get through each day.

Thank you for reading this post.

Cleo eyes

Posted 2/11/2012 11:08 AM (GMT 0)
Oh my,

Have you tried a heated bed buddy? They help so much with the shoulder pain. I got my bed buddy at Walmart pharmacy. They are a tube of rice or buckwheat that you heat in the microwave and put around your neck. You can get ones that go over your shoulders and down your back too. I got two friends one for Christmas, but forgot to get one for me. The neck stretches are good for you too, but don't push beyond your limit.

I hope you try the bed buddy if you haven't already. They work miracles especially during the cold weather months.

Best wishes,

Hugs, Karen
Posted 2/11/2012 1:32 PM (GMT 0)
Hi, Cleo, and welcome!  I am working on trigger points lately.  I just ordered a book about these.  My massage therapist works on them when I have my monthly massage and it does help.  Trigger points feel like little knots or marbles in the muscle.  The muscle is spasming.  She will press as hard as I can tolerate and then massage a little.  Then press again and massage again.  The muscle smoothes out and the pain eases. 

 

I would get the knots at the base of my skull on each side of the spine. I learned to massage like I told you above and have gotten rid of these and nearly all my neck and upper shoulder pain, too.  See if you have these.  They will feel tender to some pressure.  Karen's suggestion of the Bed Buddy is excellent, too.  This is good to use after you have massages that area.

 

If you haven't already, please read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there about this illness.

 

I hope Robin comes on and posts.  She, too, has scleroderma.  I have an ileostomy due to Crohn's disease so there are people here that really do understand your problems.  I hope you are having a better day today.

 

Sherrine

Posted 2/11/2012 3:53 PM (GMT 0)
Hi Cleo, welcome to the fibro family :) ...as Karen and Sherrine suggested, heat really does help. I find that soaking in a warm tub really helps and I use the microwave moist heating pads anytime I'm sitting at home...using one right now,

I also have scleroderma as part of mixed connective tissue disease...taking methotrexate has helped slow down the progression.My disease is also systemic and has affected my heart and lungs. I also have skin issues with mine.The connective tissue diseases have many symptoms similiar to fibro...mainly pain and fatigue.

My neck has some degenerative issues, and I also have DDD...degenerative disc problems in my spine, a MRI confirmed this. Fibro does affect our muscles and there are trigger points in our neck area that become tender too. Osteoporosis can also cause problems in the neck,

As you know, autoimmune diseases have a mind of their own and can cause a myriad of problems...Scleroderma can affect skin, bone, ligaments, joints, vessels, and our organs if it is systemic.

Have you had your yitamin D level checked? So many of us have been found to be deficient and that can really add to your pain.

In the past, I've been on pain meds everything from NSAIDs to vicodin, steroids... predisone, antimaliaral drugs...plaquenil, immunosupressants, immuran and now MTX. For fibro...Savella and Flexeril...and there are heart meds i take too.

Exercise...gentle stretching and walking have helped me considerablly. Over the years I've also found physical therapy helpful. One thing that has helped is relaxation therapy, I do a combo of meditation, visualization, and deep breathing, it has helped with the pain and stress. I don't like taking the meds either and wish there was a way to get off :)

Wishing you the best!

hugs, Robin
Posted 2/11/2012 11:47 PM (GMT 0)
Try Sombra. It is a muscle rub. I get it at my massage therapist office >> I would not be able to function without it !!! Go on line you will be able to find it !! I have trouble with my neck and shoulder .. It really helps.. Good luck I wish you well !!!
Posted 2/12/2012 5:15 AM (GMT 0)
Thank you all so much for all of the advice, it is comforting to know that I am not alone suffering.

Karen, I went out today, and managed to find a bag with gel in it, that either I could warm up in the microwave or put in the freezer.
My husband is now starting to gently massage my neck and can feel lots of hard knots around the collarbone area.

Sherrine, my physio also does the same massaging and easing the knots out of the shoulder neck area. She has just started to stretch my whole neck out, with me laying flat on my back with my head hangng over the edge of the bed, she then stretches the back of my neck out, which feels good.

Robin, thanks also for the advice, I had my vitamin D levels checked a couple of years ago, and they were quite low, was taking Vitamin D tablets, but once I finished the course, forgot to buy some more. Nevertheless, I shall get my act together and get them checked again.
I haven't seen a Rheumatologist for over a year, they don't do much here in Australia, mainly monitor you, but don't treat you, unless you are at deaths door. I have lost all faith in doctors, but do see a Cardiologist every 6 months and get medication off him, and also see from time to time my Gastroenterologist. And, of course I have a really good GP.

Take care
Cleo
Posted 2/12/2012 1:17 PM (GMT 0)
Yes!  Sombra is wonderful and I love it.  I have it in a jar and also a roll on.  I keep the roll on on my nightstand and if I'm havig pain, I just roll some on and it does really help a lot.

 

Here is a link for getting it on line.  Not sure about shipping to Australia but most places do ship around the world.

 

http://www.amazon.com/Sombra-Therapy-Natural-Relieving-3-Ounce/dp/B0007LM3UM

 

Sherrine

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