Fibromyalgia and adhesion & fascial issues

Posted by kach @kach, Apr 9 10:10pm

I have fibromyalgia and have had widespread skeletal muscle pain for a number of years. This past year, I started having pain issues due to adhesive capsulitis (freezing of my shoulder and ankle), myofascial adhesions, and plantar fasciitis. Is anyone else with fibromyalgia experiencing these type of issues? I am wondering if they are related to my fibromyalgia or some other underlying problem.

@kach

Well, the first time that I actually went to see a specialist about my widespread pain and other issues was about 7 years ago at the age of 54. This was the point at which my symptoms were really interfering with my function and quality of life, although I had already been having symptoms for quite some time.

My ICD diagnosis at the time was chronic musculoskeletal pain even though the specialist told me that I met the criteria for fibromyalgia. She wasn’t helpful at all in providing me any information as to what I could do about it. I was also confused as to why my diagnosis ended up being chronic musculoskeletal pain when in the office she told me that I had fibromyalgia. It was only several years later that I learned that it was because an ICD code specifically for fibromyalgia had not been established yet! I am glad that a specific code was created: It is so much more than just chronic musculoskeletal pain!

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I had horrible myofascial pain for years. In my trapezoid area. If you can find a good massage therapist who really knows myofacial release, you will feel SO much better. Good Luck!

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@ess77

@lioness, @kach Hello, all. Well, we all know this crazy fibromyalgia is a tough one. Like you, lioness, I was diagnosed with fibro in the dark ages, when I was in my 30's and the doctors had no idea what was happening.

Well, last year I saw, a Mayo YouTube of a Fibro convention in Ireland. I learned it is real, extremely painful all over, never goes away and seems to resist almost everything we try for relief…..and, I learned they now know we have painful related issues…And, because of fibromyalgia, we feel more intense pain than other folks. It's amplified. What an eye opener for me. I knew from experience, but I never believed it was real, thought I was imagining

I'm 74 now and recently learned to do what you mentioned, lioness. I'm taking control of my body, of my life, listening to what my body says. I've all my life pushed to go far beyond the point my body began screaming at me with pain and exhaustion, wasn't going to let this pain stop me! It seems we're always in fight mode with this illness, aren't we. Fighting against having it, against the pain and to keep going.

Well, if we stop fighting and let our body speak to us, we'd slow down, rest, take a day off to recuperate from over-doing the day before I'm resting today, after doing too much and I didn't stop when I should. I have a small fridge in a 2nd bedroom, a coffee maker, microwave, and keep cold diet coke/water/green tea and whatever, with yogurt and fruit and other foods so I can stay upstairs. I have 14 steps to climb. When I need to take a day off or can't function well, I stay upstairs. At first I thought I was giving in to the illness. I felt defeated. NO. It's listening to my body and helping myself heal. Doing what's good for me.

It took me 40 years to admit that I can not do what I want. I refused to be defeated! I'm not defeated. I'm surviving.

Several years ago, my shoulder began hurting. I have a torn rotator cuff. Don't know how or when, but it was painful. No surgery, so, I worked w/PT for a year. Same with my elbow. Wrist. Hands. Legs. Back. and more.

And, a PT therapy pool is my salvation. with warm water, exercise in the water for 1 hour. No more. I must be careful not to overdo and undo the benefits. I urge anyone w/fibro to ask your doctor re this therapy. Insurance covers the cost. For me, no other exercise or pay dearly in long-term pain. Just the pool. And walking, very carefully w/my walker and just until I begin to tire. Massage is wonderful, but costly.

I take Robaxin for muscle relaxation as my muscles are tight and fight all the time. That helps. Cymbalta is one of the best meds for me for the firbo pain. As is MMJ. I use 1:1 tincture nightly for anxiety, pain, insomnia, and sleep well. Requip for dopamine enhancement for RLS. And, a b-pap for apnea. And, I sleep. Good rest;

Now, it has taken me all these decades to get here. These are some of my answers for these issues. I'm living, surviving, and healing at times now. All because God finally got through to me, I got Mayo Clinic help, I'm on Connect and have my friends here to keep me going and help me grow. And, I'm working like a trojan to accept my body as it is and life as I can have it. Still hurt. Still have down days. Still get worse, then better….I'm thankful.
Blessings to you on this crazy journey of ours. elizabeth

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@ess77 Glad you are listening to your body it took me decades to learn to say No when I know if I do more I will hurt and mine is the next day I just hurt and can't do anything One other thing is your emotions I one time was extremely upset at my grandson and yelled at him next day the pain was excruciating Our bodies react to our emotions as well as overdoing Has anyone e found this to be true for you?

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I totally agree and relate to the physio-psychological relation with Fibronyalgia, among in general inflammatory spikes in anyone with any general specialty condition that is chronic and incurable life altering. But most specialists really get concened if they have any vrains and conscience when it comes to helping their patients manage the conplex world of living eith a rare diagnosable autoimmune disease, wh8ch I also happen to have Primary Immune Deficiency Common Variable. I have little to nil social support and cant afford a therapist let alone find one taking new patients with Medicare, long before but especially since CO-VID hit. Managing the autoimmune diseases has only got even more psychologicallly overwhelming.

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@lioness, @nicolekhoury39 I think you will find something to think about in the recent posting by @rwinney, in chronic pain group. She opened a discussion on centralization sensitivity. I did some research, 3+ hours online, and agree with her thinking about the conflagration of illness one person may have and how many we may develop all connected ….ck out the website she mentioned.
Blessings, elizabeth

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@nicolekhoury39

I totally agree and relate to the physio-psychological relation with Fibronyalgia, among in general inflammatory spikes in anyone with any general specialty condition that is chronic and incurable life altering. But most specialists really get concened if they have any vrains and conscience when it comes to helping their patients manage the conplex world of living eith a rare diagnosable autoimmune disease, wh8ch I also happen to have Primary Immune Deficiency Common Variable. I have little to nil social support and cant afford a therapist let alone find one taking new patients with Medicare, long before but especially since CO-VID hit. Managing the autoimmune diseases has only got even more psychologicallly overwhelming.

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@nicolekhoury39 Welcome to Mayo Clinic Connect, a place to give and get support.

It doesn't sound like you are in an ideal place and I'm sorry to hear you can't find therapy with your insurance. I'm wondering if you have considered calling your local county human services. I have worked alongside the county for a long time and often there are resources but they aren't advertised. I'm wondering if you have heard of an A.R.M.S. work?

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@wheelerma

I had horrible myofascial pain for years. In my trapezoid area. If you can find a good massage therapist who really knows myofacial release, you will feel SO much better. Good Luck!

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I couldn’t agree more. I continue to search with no results. I’m in Houston so there should be at least one. P.S. I did go to one, but turned out to be miserable as all he did was tell me how great he was. Anyway, good luck to all

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