The correct web link that rpwoodard is talking about is:
http://www.cortjohnson.org/
You seem to have a lot in common with folks who suffer with Myalgic Encephalopathy ME/CFS. I mentioned some websites above. I've spent much time on these 2 websites because the folks refer to research, not just opinions. There is too much mystery around this condition.
rpw
Well we are not doctors.
I did read your first post a few times and cannot see mention of dysauntonomia. As we age things unfortunately do get much worse.
As I have got much older, I have come to realise that even if a cause is found there is not always a cure, and we have to adapt and do the best we can and manage the symptoms through physio, exercise, rest, good nutrition, good sleep hygiene, and so on.
Skeletal problems can also have an impact on muscle weakness.
I understand that it would be nice to know for sure what the condition that we have to be able to understand it even if there is no cure.
I do hope, that you do get to find the cause of your problem to get the appropriate help, but as you have found out it is not that easy always find a cause.
Best wishes.
I did mentioned dysautonomia, not that it's relevant. Dysautonomia, by definition, does not affect voluntary muscles aka musculoskeletal muscles. It can make someone feel tired but it does not cause true weakness or pain. It also does not limit exercise beyond tachycardia, hypotension, and temperature regulation and does not have a capacity to limit fitness progression.
As when I mentioned dysautonomia, I've had it for a number of years (plenty of time to build a solid knowledge base) and have met a variety of doctors to get an idea of what symptoms I experience are autonomic and which are not, even an autonomic neurologist to confirm: muscle issues and my type of fitness limitation have nothing to do with dysautonomia.
No offense, but your responses, especially the last one, makes me think you're suggesting things without reading what I have said.
The original post revolves around the non-autonomic issues, which are undiagnosed and I am getting a feel for which conditions might include those issues. I have a lot in common with multiple sclerosis and LEMS by symptoms, but by patterns of these symptoms don't align (85% of MSers have very distinct relapse and remission phases, which I never did) or I don't have the most distinct symptoms known to that condition (myasthenia gravis usually have muscle weakness most pronounced in the face). This does not exclude these conditions, but it makes them less likely, which makes me want to find other conditions that can cause the type of muscle issues I've been experiencing.
Meralgia paraesthetica problems get much worse with standing and also with walking.
You did not mention that you have dysautonomia and a lot of your symptoms are because of this condition. You may find the web link gives you more information on this debilitating illness.
http://www.medicalnewstoday.com/articles/76785.php
Do let us know how you get on and if you do find a cure do let us know.
Electrolytes are part of basic metabolic panels and vitamins are part of intensive metabolic panels, both of which I've had. Proper hydration is common sense and vital to my dysautonomia management.
Meralgia paraesthetica and fibromyalgia have never been brought up--they're fairly different than what I experience (fibro's tell-tale "muscle" symptoms are tenderness-to-touch and press points. It does not truly affect muscle function. Meralgia's pains are in limited to outer thigh and groin locations [don't have] and caused by compression not exertion.)
Has meralgia paraesthetica and fibromyalgia been ruled out?
Numbness and burning in the groin around the belly when standing and burning and numbness on the thighs (usually the on the outer thighs) is highly likely to be aggravation on the nerve in the groin causing meralgia paraesethetica.
Make sure that you are drinking plenty of fluids and especially water. It may be that you are lacking in some essential minerals and vitamins - Magnesium, salt, iron, Vitamin B complex, Vitamin D etc. I presume you have had a blood test to check the B and D levels.
With chronic pain, sometimes even when the cause is found, there is no cure and it is then down to management with physiotherapy, hydrotherapy, massage, acupuncture, gentle exercise, adequate rest, a good healthy diet and management with medications for pain relief and antidepressants that work on nerve pain.
Thanks for the responses. Usually I research possibilities to discuss with my doctor, but there isn't much relevant information online for these things if all you have for keywords are variants of chronic, muscle, and pain. We've been investigating things one at a time and I recently visited Vanderbilt for my POTS/autonomic dysfunction treatments. So far diagnostics that would explain muscle issues have not shown anything. Endocrine and metabolic panels are normal. ANA, ESR, CRP tests are normal. Clean brain MRI. My next neurology appointment we'll be coming up with a new game plan and figure out these muscle issues. Waiting between appointments *****.
I agree with the other responses.
I've seen lots of folks describe symptoms similar to your on the following forums: phoenix rising . me and health rising (cortjohnson .org)
I hope you find a thorough, compassionate doctor to help you.
The answer to your question is yes.
Book an appointment to see your doctor with all of your symptoms.
Like philnoir mentions, there are a number of medical conditions that can cause these types of symptoms. Some antidepressants are prescribed that work on reducing referred nerve pain or nerve pain due to damage.
You do need to get blood tests done to find out if you have an inflammatory disease, have glucose intolerance or diabetes as well as imaging to see if there is any degeneration in the spine or any of your bones.
Spinal problems can cause aggravation on nearby nerves that can cause your symptoms too.
Try not to do too much all in one day. You have a problem now so don't force yourself to do things that you are not able to any more. Pace your day and take things slowly. If you overdo things, as you have experienced, it will make you feel more tired and unwell.
Book an appointment to see your doctor and get an assessment.
Yes, symptomatic numbness and muscle weakness are associated with PN, however, they can also be found in dozens of other ailments.
To reach a definitive diagnosis more information is needed.
The best way to reach a diagnosis is to see a physician, who will take a medical history and perform a physical examination to start the process.