Chronic thigh bilateral leg pain

Posted by pbeck95 @pbeck95, Feb 2, 2025

Hello, my husband, a 31 one year old, has been dealing with persistent leg pain since October 2023. He went an intense long bike ride in October of 2023 and since then his legs have been sore. He describes the pain as his legs being inflated up with air similar to a balloon which has caused him leg weakness. There have been times where he has been unable to walk and stand for long periods of time and was using a wheel chair but he says it doesn’t make the pain better as it’s still there. He has received a MRI with contrast of his brain and all of his spine to rule of Multiple Sclerosis. They did not find lesions. He also tested negative for lupus. He has received a genetic test to rule out Kennedy’s disease which was also negative. He has past diagnosis of fibromyalgia and Bell’s palsy however his doctors don’t think it’s related to this ongoing leg pain and weakness. He is currently under the care of a rheumatologist and neuromuscular specialist and has seen a neurologist and pain management specialist who has been prescribing him tramadol for pain but lately it has not been helping him. I also want to add what he’s had blood work where he had deficiencies in vitamin b, d, and folic acid but states that he has not seen an improvement in his pain since taking vitamins. He has an appointment this month with his neuromuscular doctor where they finally agreed to do a muscle biopsy. They believed there wasn’t a point to this due to his EKG coming back normal but they finally agreed to the test. He is desperate for answers as he cannot walk for long time or take stairs without pain. Does anyone have any advice or suggestions on what to do next? Or has anyone known of someone that has dealt with something similar. Thank you.

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Profile picture for pbeck95 @pbeck95

Hi, he has an appointment soon with his pain management doctor through the VA. I hope his doctor is open to RFA as he’s willing to try almost anything at this point. Did you have to convince your pain management doctor to try RFA with you? His doctors at the VA tend to be very hesitant with treatments due to not having a diagnosis.

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Well, why haven’t the dang doctors given him a diagnosis?! I’m sorry, but I have no patience for the VA. I was at the eye doctor and the nurse attending me gave me a horror story about her husband and his horrible arthritis. Her husband‘s arthritis is being neglected and he probably doesn’t have OA. He probably has gout so I gave her a whole bunch of helpful tips And she was astounded. If you are in San Diego, I suggest your husband get referred over to Ucsd and to the pain management clinic with Dr. furnish. When I went there 25 years ago, it was headed by Dr. Wallace and they offered me the RFA. It was covered because I have a diagnosis and your husband should have seen a doctor that deals with issues that emanate from the Spine.. He needs to be having X-rays and MRI, seeing an orthopedic surgeon and being in a good pain management system which the VA does not have. So even if you aren’t in San Diego, I know from experience that the VA doesn’t have good qualified pain management clinics so get referred to one outside and you’re going to have to help your husband as far as being his advocate to get what he needs because the VA is absolutely horrible and getting worse as the days go by. It’s the same story with all of our veterans. They get such shotty care. I can’t even tell you figure out a way to get out- I mean referred. I was misdiagnosed in the early 2000s three separate times! I finally wrote the commander to ask to be referred out in town where I got diagnosed properly. All sad but true! The doctors were way too young and on residency to be doing the work they were trying to do. They can’t diagnose properly things that are degenerative in nature. They rotate bases and they don’t see the same patient over the long haul. I hope at least you’re out of VA that has stationary doctors And not on the military base but out in town VA.

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My friend had this sort of thing. Everything is (tests) coming back negative. Did an ultra sound of where the pain was to find out arteries were plugged up causing issues. Reamed him out put stent in good to go. This year he will do the other side. Seemed to help.

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Is he on cholesterol medicine? I had this and it turned out that my cholesterol medicine was causing sever muscle myopathy and within days of stopping it it went away.

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Fibromyalgia doesn't go away and does strange things. I have FMS and Parkinson. My lower legs hurt and can't stand or walk long. It's Parkinson rigidity in my case. PD can have varying symptoms and is common to have with Fibromyalgia. I told a neurologist that specializes in PD and MS there is only one thing consistent with FIBROMYALGIA and that is nothing is consistent. He thought that was a joke. My new neurologist understands that to be true.
Hopefully you will find the answer.

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Not to sound too simplistic, but has he been seen by a good diagnostician/ chiropractor.
Mine takes care of my back and leg pain. Has for years.

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Profile picture for celia16 @celia16

I’m sorry to see what your husband is experiencing. He’s so young to have such a disabling condition. Was his EMG normal?

I’ll just add that I encountered something similar when I was in my 40’s. I was very active and ran, I suddenly got extremely sore, weak and stiff leg muscles. I posted a long post about it somewhere around here. It’s difficult to explain how sore, weak and stiff my legs were. I could barely function. Multiple tests were not helpful in bringing a diagnosis. I saw primary, neurologist, endocrinologist, orthopedist, and rheumatologist. The rheumatologist wrote my primary a letter saying that it appeared to be polymyalgia rheumatica, except I was too young. I’ve always wondered what it really was. It lasted about 6 months and gradually improved. My legs were not normal for at least a year. If I got it again, I’d work with a therapist to get the stiffness out.

Best of luck with everything. I hope he can find answers and sone treatment that helps.

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Hi!
I'm 56 years old. I started to have the same issues.
I'm a massage therapist. So I use my skill to treat the problem by using lotion with my knuckles to massage it wherever you feel the pain, also you can use tapotement technique.
My my pain goes away instantly and it saves me alot of money.

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Profile picture for sonnyokc69 @sonnyokc69

Hi!
I'm 56 years old. I started to have the same issues.
I'm a massage therapist. So I use my skill to treat the problem by using lotion with my knuckles to massage it wherever you feel the pain, also you can use tapotement technique.
My my pain goes away instantly and it saves me alot of money.

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@sonnyokc69, that’s great news. I didn’t do therapy and should have. But, it’s been years and hasn’t returned. I hope it never does. I do think various types of healing touch, pressure point, and other methods of touch are quite helpful, based on my experience. My legs weren’t painful per se, but sore. Incredibly sore. Still a mystery.

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