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

 

[Ramona Fernandez]

55 me/cfs patient here. me is in the nervous/immune system in my humble opinion. there is no 'true' cause of the pain in the sense that you can identify. more and more the vagus nerve is being studied/treated for us.

I have the groin pain for many years. It comes and goes without warning. Nothing seems to help but narcotics for the sharp, stabbing pain in my right groin. Most of my pain is on my left side, so the right side surprised me at first.

I've never had the chest pain. But I want to emphasize that I don't believe there is a specific trigger but more of a systematic nervous/immune system response.

I know that caregivers have their own special suffering to bear. Studying the nervous system itself for insight and try not to look for a single, identifiable cause. me/cfs is chaos, not logic.

 

[Nanci H]

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.

.

 

[Nanci H]

I posted a long screed here last night, so my apologies to anyone who found I prattled on and on. I had experienced pain for years, mostly in my lower legs, but it was moving up my legs and it was starting in my hands as well. I had been on opiates for years, slowly moving up in dosage as my body became ever more tolerant to the drugs. The only way I could describe the pain was that it felt like ground glass in my veins. Finally I ended up on the highest dosages if oxycontin and fentanyl my doctor could prescribe without bringing down the FDA on his head. My tolerance of the drugs was increasing as the pain was getting worse. It felt like it had moved into my bones and was so bad that I was suicidal.

But I had been following the progress of a new non-opioid drug as it was going through the usual channels. I figured that it would be years before it was approved by the FDA - IF it worked and IF it ever was approved. I’m sure that a lot of motivation for such fast approval was a demand for a non-opioid pain drug in the market, but I was shocked when the FDA approved it after 14 days of testing. When I asked to try it, my doctor asked if I was sure I wanted try a drug that has only been tested for two weeks, but I was desperate. Instead of working on the pain receptors in the brain, it works by blocking one of the sodium channels at the site(s) of the pain.. Hope I’m describing it correctly - I’m not the medical whiz that a lot of folks who post here are.

It’s called Journavx and it worked for me immediately. I was off all of the opiates in less than a week; didn’t even have withdrawal. It’s expensive, but as long as it keeps working and I can scrape together the money, I’m happy to be their guinea pig.

Poking around on the Journavx web site I noticed that they HAD posted a list of possible side effects. Then that list was altered, then it was taken down altogether. So far the only reaction I’ve had is a heat rash that wouldn’t respond to antihistamines so did a course of prednisone. I can tell you that menopause plus prednisone equals the mother of all hot flashes. I’d love to hear from anyone else who tries it; mostly I’m curious if it works for other people and what, if any, side effects they have

 

[Ramona Fernandez]

.

I have fleeting sharp pains randomly all over my body, but nothing settles in and stays for long. Of course, I have the flu like muscle pain everyday.

My idea is that whatever is wrong -- especially the inflammation in our brains that is now being confirmed as basic to ME/CFS -- send signals randomly in a kind of fritz -- radio static. That this has settled into predictable spots puzzles me, but I doubt there is something triggering these areas except for the brain inflammation itself.

The latest idea: treat the inflammation.

 

[Nanci H]

I would LOVE to treat the inflammation.. How do you go about it? I can’t take NSAIDs after having stomach surgery years ago. Any ideas or experience would be VERY welcome,

I’m sorry to be so ignorant. I used to follow this board years ago, then got to a place where I just couldn‘t do it anymore. Now it’s about all I can do.

 

[Ramona Fernandez]

Watch Jarred Younger's YouTube channel. He has a video from about a week ago about his latest research into the inflamed ME/CFS brain.

I am taking low dose naltrexone (compounded -- 4.5 mg), ginger and turmeric (in tea form), high dose Vitamin C are things I use.

There will shortly be a race to find the best anti=inflammatories for ME/CFS and by extension related conditions.

 

[Nanci H]

Oh, THANK you. I’ll definitely check it out. My memory is pretty torn up so if you or anyone following this thread sees news about this, please do make a post. I wasn’t aware of this, but since I started the thread, I get emails letting me know when someone posts a new answer. (Probably not news to anyone else on this board!)

And I would bet that the newsletter will make a splash with this information, too. I’m so grateful for all the people who share their experience and knowledge here!

 

[Nanci H]

Aaaand one more question: is the low dose naltrexone a prescription? I’ll definitely do it, but I am in constant contact with my doctor. I hate to keep bugging him. But I will if needed!

 

[RenW]

Aaaand one more question: is the low dose naltrexone a prescription? I’ll definitely do it, but I am in constant contact with my doctor. I hate to keep bugging him. But I will if needed!

LDN does need a prescription. There are telehealth clinics that do prescribe in the US. There also is a chemist in the UK that will prescribe and dispense it. I've got a bunch of information about LDN, finding prescribers and pharmacies in this document:
https://docs.google.com/document/d/16z-tQwAEezvbqZ8JlAbxQq2d_ayM6p4ak0ry6hRgBWc/edit?usp=sharing