egregious muscle pain

[Hank]

Since you mentioned heat, I want to add something here. Linda has found that keeping a heating pad on the inflamed area is the most effective way of easing or even eliminating the worst of the pain. It takes it from a 9 or 10 down to a 1 or 2. Needless to say she keeps the thing on the affected area day and night when one of these things happen (always out of the blue). The most recent one (ongoing now) has lasted about a month it seems.

 

[Ann OConnor]

I am my wife's caregiver.

Her quick history: she was diagnosed with fibromyalgia in 1990; she developed chemo-induced peripheral neuropathy in 2014; and this year she has developed a third condition, ME/CFS. Her latest awful CFS symptom? She's having episodes of quickly-developing excruciating muscle pain in localized areas. In Feb. '24 it was in her groin. She could barely walk and the pain just killed her. That lasted about 3 weeks. A month later, again for NO REASON, she developed a severe pain on the right side of her chest. It too was super hard to live with, making it a nightmare to cough, sneeze, laugh, etc. If anyone has had shingles, that is the level of pain we're talking about. That subsided after a few weeks. Then the groin came back for 2-3 weeks and then went away. Then 2 days ago on 10/24/24, the chest again, which happened out of the blue. She could barely move on waking that morning and had a day no caregiver ever wants to have to witness. I felt shell-shocked by the end of it. But then yesterday it was slightly better. But why are these things happening? No clue.

So my wife wants to figure out what triggers this and asked me to see if I could find anyone else online who has dealt with anything similar to this (she is stubbornly computer illiterate herself). And that is why I joined this forum. Initially I tried to search on here for posts related to muscle pain. Nothing that turned up related to her situation at all. I am wondering if there is a way to find others here who might have experienced something similar to what she's going through, and what they may have learned about what causes this?

Thanks in advance to anyone who can enlighten me.

I have also been dealing with this exact thing is your wife over the past 6 months. I absolutely cannot figure out the cause of the pain and what triggers it so far. I have an appointment with my PCP next month and hope to discover an answer. I have a feeling he's not going to know because I've already seen an orthopedic surgeon, cardiologist, neurologist and ( ENT for these spasms also affecting my vocal cords and my throat and feeling like I am being completely strangled. All of them just told me that I have some type of muscular pain disorder related to a chronic pain syndrome caused by my ME/ FM. None of them have had any solutions to the issue except for the ENT that sent a referral for me to go to a vocal coach to try to learn to use my diaphragm to speak instead of stressing the muscles in my vocal cords. I hope we all find an answer soon because this is atruly unbearable way to live.PS. I've also had severe long covid since 2022 and now at long covid again 2 weeks ago and in neurological pain.
Sending lots of love, positive healing vibes and best of luck for a speedy answer and a quick recovery.
Ann

 

[bobnajera]

I’ve dealt with similar pain, and one thing that helped me was addressing inflammation directly. Have you looked into corticosteroids? They can help with muscle pain by reducing inflammation. If you're considering it, you can buy steroids online, but make sure you research well and stick to legitimate sources.

 

[Quowe]

Muscle pain is near the top of my list when it comes to symptoms of my ME/CFS. My muscles are chronically tense with frequent spasms. I always have pain in a few places, but other spots emerge, stay a while, and eventually go away, only to reoccur in a new spot. Since your description of her pain seems reminiscent and no one else has mentioned any site specific treatment, I thought I would put in my 2c.

My chronic muscle tension and pain emerged about the same time as the debilitating fatigue (my first symptom) of ME/CFS. The severity crept up over a few years until I was pretty miserable all the time. Docs tried a few different muscle relaxers and referred me to physical therapy more than once. I also started taking supplements suggested for muscle relaxation. None of those efforts had any effect on my pain level.

The first treatment that offered any relief was massage therapy. My pain tolerance is pretty high and those sessions were rough, so I'm doubtful this approach would be possible for your wife. However, when my therapist passed away and I could not find another, I decided to try chiropractic. I should note that none of my six doctors had ever suggested this as a possible treatment option and I had always been skeptical about such providers, so I never asked. But at this point I was so desperate for relief that I was willing to try just about anything. And so, I made an appointment and it just so happened that the clinic had a nurse practitioner on staff and she offered trigger point injection (TPI). We quickly learned that without the TPIs occurring first, little "adjustment" was possible on my body. And so I began having both at every visit. While I obviously can't really separate the effects since I always have both, I do know that the muscles we target with TPI start to relax immediately. They hurt, but not for long. And so now I know that if I attend faithfully every two weeks, my level of chronic pain is significantly reduced overall.

Good luck to you and yours.
Laura