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.