ME/Fibromyalgia overlap

[Centime Tara]

I’ve been ill since 2018, when I caught a bad virus. After years of research and tests (Mayo Clinic, Mt. Sinai in NY, numerous specialists) it’s pretty clear I have ME. Just recently I’ve started to have serious pain all over my body, especially in the joints. I have osteoarthritis, and that’s what it feel like, only suddenly it’s everywhere. Also, my brain fog is suddenly significantly worse. In researching these new symptoms I learned that the symptoms of ME and fibromyalgia largely overlap. I know they’re often comorbid, but how do you tell them apart? My GP is smart and self-educating, but when I see him (soon), I’d like to bring him as much info as possible. Can anyone suggest studies I should read? Many thanks.

 

[wabi-sabi]

I think Bateman Horne is one of the best info sources for both illnesses.

Here is the page on fibro: https://batemanhornecenter.org/providers/fm/

Here is the page on ME/CFS: https://batemanhornecenter.org/providers/mecfs/diagnosing-managing/#diagnostic-criteria

In a nutshell, fibro has fatigue and flares, but not PEM. It can be hard to tell the difference between PEM and a fibro flare for some patients or docs. Fibro seems to be more of a brain disease where the brain overreacts to sensory stimuli making everything painful. The pain is much worse is fibro than in ME/CFS.

Fibro: horrible pain with a side order of fatigue
ME/CFS horrible fatigue/PEM with a side order of pain

Here's a video on diagnosing them:

 

[Centime Tara]

Thank you very much!

 

[lenora]

I can't give a place to find info, but I suffer from both illnesses. As a matter of fact, I've often wondered if there is a place for FM after the name change to ME. We're definitely stepchildren.

There is a lot of pain involved with FM. I've had it for probably 40 years now, and it changes form and you do learn different methods of treating it (plus you just know you're never going to be even close to pain free). I find that the drug lyrica helps with pain, ice pads definitely help me more than heat....will numb the pain entirely, especially if I lay directly on the spine. I also use it on the neck and shoulder areas and anywhere else that needs it. (I use Ace ice packs....different sizes & reusable).

There are also creams that can be obtained (with a prescription) from Compound Pharmacies. Heat is the enemy of these creams, so make sure it's well packed in ice.

Also, I've noticed a lot of over the counter products that are containing 4% lidocaine.....really, it's a combo of many things. If I get it under control, it generally works for at least one-two days, sometimes longer.

We're not all the same, so the body doesn't respond to all treatments in the same manner. Still, some of this may help you.....I hope so.

I used the exact same treatments when I fractured my pelvis in a number of places going on 2 years ago. Also my fractured vertebra. Since the med profession can't give you anything that erases the pain, I used the above and wasn't in non-ending pain. I just had to be on top of it. The injuries were bad enough that I was bedridden for a year, couldn't walk and even now things aren't right. Well, then I was told to expect arthritis within 5 years.....I have osteoporosis and have already lost 3". I had osteoporosis when I was 40 and no, things like Fosamax, Prolia, etc., don't necessarily work. Good luck to you. Yours, Lenora

 

[Centime Tara]

Thank you for all this information—I really appreciate it, and will try your suggestions. I have a feeling most of my pain is arthritis, but it came on so suddenly and is everywhere I’m trying to consider everything. I’m grateful for your note. Best, Centime

 

[Rufous McKinney]

I wonder about this remark :

Poor coping skills or maladaptive behaviors, often related to lack of disease recognition and education, may compound FM symptoms and worsen prognosis.


Whose maladapted behaviors are being referred to?

 

[Rufous McKinney]

ice pads definitely help me more than heat

I only use heat.......I never use ice.

 

[Judee]

Just recently I’ve started to have serious pain all over my body, especially in the joints. I have osteoarthritis, and that’s what it feel like, only suddenly it’s everywhere.

Ask if he can check your Vitamin D levels too if you haven't. If your levels are low, that may be adding to the pain. Getting my levels up helped some because it was getting like this for me too, i.e. pain all over all of a sudden and taking prohealth d3 extreme about 2x a month with K2 and Vitamin C helped.

 

[lenora]

Hi @Judee.....It's possible that the osteoarthritis has set off something like FM. Are they even sure it's osteo? Possible it's something else that has started in the joints. I guess we all deal with osteo as we get older. Cortisone shots have helped a lot of people for mos., yrs. at a time, but the fact is that you'll need surgery, you'll have to have something like a knee replacement at some point. My knees are also a problem and I use a lot of OTC products, especially those with 4% lidocaine & layer it.

Rod just called.....he's had a rough weekend with knee pain and back spasms. Fortunately they aren't connected or I'd be concerned. The Dr. did give him a cortisone injection for his knee, and said it will last mos., if not a year. I believe 3 injections is the maximum. See, that what happens when you plant pansies behind your wife's back. 😊

So yes, perhaps you do have FM and I found that neurontin and now lyrica helped immensely with the pain. You can start at the lowest dose and slowly move up. Vitamins did not help me, although I believe they help to keep our bodies going and yes, I take that back, in certain situations they can help. Good luck and pull your electric blanket out. Warmth will probably help. Feel better. Yours, Lenora