egregious muscle pain

[Hank]

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.

 

[pamojja]

I had severe stabbing chest pains upon mental or physical stress. Found by incident, that CoQ10 relieved it for me.

Since you call it muscular pain, your wife's ordeal must be different? Is it maybe possible you describe both pains more differentiated?

 

[Hank]

Hi, thank-you for your reply. The pain, as described by my wife just now, is not the same type of muscle pain as when you have a sore muscle. She said the pain is a sensation of what it would be like to have your muscle ripped from right off the bone. It feels like it is located in the muscle and occurs whenever she moves or when she sneezes, coughs, laughs, etc. The pain is utter agony when it happens and from my perspective appears like it's the worst most awful experience anyone would want to have happen to them.

She does take Mito-Q,. a product from Australia which is touted as a "super Co-Q10". It's supposed to readily cross the blood-brain barrier.

 

[pamojja]

Thanks for describing it further. I hope someone else can relate, and might be able to give further insights. It's different to mine, which was a stabbing with each breath taken. Also forgot to add, above 160 mg Ubiquinone or 80 mg Ubiquinol is the dose helping my case.

Pain can be terrible, I think there seems no bottom to it. My worst was with a spondilodiscitis mistaken as a herniated disc in India more than 20 years ago. I waited it out for 8 months inmoveable in the horizontal. At worst only 4.6 g/d of Ibuprofen helped it a bit. Like 2 hours after each dose, waiting another for the next dose (for not taking more than this insane dose already), and further one for the next dose kicking in, giving slight relieve for 2 other hours (within 4).

With my bad experiences with terrible pain I had one advantage: unshakeable confidence that things, coming out of the blue, might as well leave likewise. It always did. Already had deathly disease at birth. Ibuprofen might have been the only painkiller helping due to its strong anti-inflammatory properties. So which pain-killer helps, might be another avenue to explore the origin of a pain.

Had an Canadian acupuncturist and a Croatian massagist during the 8 months trying to help. I found it hardest as patient to cheer them up when they seem to lose hope with me. So take good care of yourself too.

 

[Hank]

Linda commented that perhaps her pain and yours are different more in the way it's being respectively described but not necessarily that different in origin. The Ibuprofen would be nice to try for her but she happens to be allergic to virtually all OTC pain meds. The other day when the recent pain episode hit she took an Oxycodone (which she can take ok) from a bottle she still has from a cancer surgery in early '23. That did help take the edge off, for which I inwardly thanked god. Such a relief to see her get some help that morning. Thanks again pamojja.

 

[pamojja]

If she meant an inflammatory origin of the pain, there would be many supplements to test against.

 

[Englishlady]

Has she consulted a doctor about these recent pains? They sound very severe. The locations seem far apart so it would be hard to see how they could be connected, except by some kind of general disease or something related to the central nervous system. People with fibromyalgia do get flares where symptoms get worse. I expect your wife knows all about that. Are her iron levels ok? Might sound bizarre asking about this but I have experienced restless legs and pricking feelings ehich kept me awake at night. These went when I took regular iron supplements. According to my bloods, my iron was at the low end of normal, so not anaemic but not optimal either. The pricking sensations I was getting were more like ant or mosquito bites so they sound milder than the pains you describe. It sounds to me like, with that level of pain, your wife needs to see a doctor again. Sorry if this is usually unhelpful (been there, done that) but the level of pain is concerning. Good luck!

 

[Hank]

Thank-you Englishlady.

She has been to quite a few doctors over the years, as I sure many people here have. If I were to start a discussion about her (our) experiences with all of her doctors over the years it would take an hour just to summarize it all. The nutshell conclusion about asking doctors for help with something like this has been that it doesn't end up getting us anywhere. So I'll just leave that there.

The opioid she took did help a lot and got her through that most severe instance. Another thing that has cut the pain has been Icy-Hot patches. I get her the biggest ones as the area on her chest is quite large. Those cover most of the worst part of the pain area. When she is in the throes of an episode she tries to move the absolute minimum as she sits on the couch. Usually if she can find a good position this helps a lot. Her ME/CFS normally knocks her energy down so much anyway, she doesn't get up much as rule even without this going on.

She has said that this pain is different than any of the pain she gets from fibro. As for your suggestion about a possible iron deficiency, I can say her PCP has ordered many general blood checks over the years and she always seem to come up normal for everything. I assume a lack of iron would show up there, wouldn't it? But thanks for mentioning it, I will go back and check her previous results and see if iron is mentioned anywhere.

Currently she is not experiencing the pain in a severe way although she does still mention it occasionally when she is moving around at all, i.e. it's there but just not at a severe level. From my perspective I am just so happy when is like she is now, not hurting terribly. As we progress through our seventies we both are just worn out from the day-to-day dealings with all the various issues and conditions over the past 12 years (when she was first diagnosed with cancer). I must have spent over a thousand or two hours researching the internet over all that time, and that has been monumentally helpful for so many of her health issues, but actually determining a specific cause for many of them has proven more than elusive. Sometimes it just seem like anything related to the nervous system, which most of her problems seem to be, is almost impossible to acquire much of an understanding of.

Thanks for taking the time to reply.

 

[buckey]

Hank, if you havnt already be sure to watch dr. Seyfried on youtube. He is an oncologist at Boston University...very smart whip exposing the current cancer treatments and helping people go into remission....the world is finally changing but the hospitals refuse to listen...profit$$ over proper care.good luck Hank and spouse

 

[Creekside]

I occasionally get sharp pain on the outside of my hip bone; sometimes one side, sometimes the other. No real muscle in those spots, so I doubt that it's muscle pain. Pressure on the spot calms it. Later I discovered that pressure on my inner thigh is even more effective. I think it's ME affecting nerves or the neurons in the brain that register "pain in this location" misfiring. It might be related to how animals have a "special spot" that when you touch them they compusively scratch or lick some other spot. It might be a long shot, but applying pressure to various points of the body might reveal a spot that somehow blocks the pain, the way it does for me.

I haven't identified any factors that trigger these pains.

Pain relievers are tricky. Women experience pain differently, and respond differently to different chemicals. I recently read ( https://www.sciencedaily.com/releases/2024/10/241016120023.htm ) that men respond better to opioids.

 

[Hank]

We both associate this particular pain with ME/CFS because we read that pain in muscles is one symptom of it for some people. Her ME/CFS seemed to begin in early Feb. this year after developing a bedsore on her buttocks area. That sore has long since healed over but still is very painful to put pressure on by sitting on it directly, so it's really still there, buried inside. The groin pain (the first of these weird pains) began about a month later. I joined this forum because she asked me to see if I could find anyone else with similar pains with ME/CFS, in hopes of finding out what helps others with it. I guess finding out a cause is much less important than finding an effective treatment.

Thanks for the suggestion about applying pressure. When it's bad she can't tolerate any pressure on the pain area itself. If I knew another spot to work on, as you suggest, that might be helpful I'd do that, but where would that be? Auto-immune maladies are baffling.

 

[Hank]

Hank, if you havnt already be sure to watch dr. Seyfried on youtube. He is an oncologist at Boston University...very smart whip exposing the current cancer treatments and helping people go into remission....the world is finally changing but the hospitals refuse to listen...profit$$ over proper care.good luck Hank and spouse

Thanks for the suggestion about watching Dr. Seyfried. Fortunately her cancer is now in total remission since her last surgery in Feb. '23. All of her current problems (well, except the fibro) started with chemo in 2014 which gave her the severe peripheral neuropathy she deals with now. That and the ME/CFS are what drags her down and limits her life so much dues to near constant fatigue.

 

[Creekside]

If I knew another spot to work on, as you suggest, that might be helpful I'd do that, but where would that be?

If there is such a spot, it could be anywhere. Pressure on my inner thigh doesn't seem like an obvious spot to block pain that seems to originate higher up my outer hip, but that's what works for me. If nerves from that spot don't go down and around to the inner thigh, then the effect might occur further up the spinal cord or even in the brain. Old-style telephone cables consisted of a large number of pairs of wires. Sometimes there was crosstalk between pairs, due to the respective wires running next to each other somewhere between the two phones. It seems at least possible that a pain in one part of the body could be blocked by sensation pretty much anywhere else. Pain perception isn't as simple as voltage on a wire; there's variability in transmission and triggering thresholds, and there's feedback that can reduce the perception. One pain signal might trigger release of pain-blocking endorphins.

I expect there's only a small chance that her pain is one that can be blocked this way, and that finding the elusive "magic spot" wouldn't be simple, but pain relief is so wonderful that it's worth some effort. When I'm lying in bed and that sharp pain occurs, I'm really glad that I can shove a pillow between my thighs for pressure, and have that pain vanish. Hard to fall asleep with that sort of pain.

 

[Frangipani]

We both associate this particular pain with ME/CFS because we read that pain in muscles is one symptom of it for some people. Her ME/CFS seemed to begin in early Feb. this year after developing a bedsore on her buttocks area. That sore has long since healed over but still is very painful to put pressure on by sitting on it directly, so it's really still there, buried inside. The groin pain (the first of these weird pains) began about a month later. I joined this forum because she asked me to see if I could find anyone else with similar pains with ME/CFS, in hopes of finding out what helps others with it. I guess finding out a cause is much less important than finding an effective treatment.

Thanks for the suggestion about applying pressure. When it's bad she can't tolerate any pressure on the pain area itself. If I knew another spot to work on, as you suggest, that might be helpful I'd do that, but where would that be? Auto-immune maladies are baffling

I have to comment about bedsores. I developed them on my ears. Like your wife, they have long since healed, but I have to change sides frequently during the night (I'm a side sleeper). If I sleep too long on one side, my ear starts to hurt and wakes me up. I know this doesn't offer any solutions, but just wanted to let your wife know that she is not alone in this.

 

[Creekside]

I recently came across an article (on Sciencedaily.com?) about recently discovered microcircuits in the dorsal root ganglia, which handle pain signal and normally receive inhibitory signals. If those signals stop, you might experience pain somewhere in your body. That might explain these mysterious pains. The article doesn't offer any treatment options, but just knowing that there is a reason for them might help in acceptance, and offer hope that further research might provide a treatment.

If this is the mechanism, it may explain why pressing somewhere else on the body might restart the inhibitory signals to the DRG involved.