I have a undiagnosed condition almost two years. Constant leg pain, twitching, leg stiffness, leg tightness, heavy etc. It feels like sitting or standing makes it worse; it’s so bad …my legs buckle and feels like 10,000 pounds on your legs, and like you’ll just collapse from the weight/pressure/fatigue…is your legs being 'flexed/clenched/‘used’ to just STAND or walk TOO MUCH FOR YOU? Would that cause all this? Or just getting up and d own? Also feels like you ran 100 miles, what you’d feel after that*. Also like if you were pulling a 1000lb tire with a rope tied to you, like you’re facing the tire, pulling it backwards and legs digging in ground*** and that just bending over is like 5000lbs strain on legs. Feels like if you bent over to pick something up, and you HELD that position there for like 9 hrs …feels like ALL OF THIS, ALL the time …HOW can doctors help you out of it even physically? How would it affect you overall? Would it cause other conditions (mentally) and change you/reality? Would you just 'accept ’ it? Just b/c they don’t find anything yet, can they still help you? (ONe doctor told me, “I’m not going to invent something just to treat you…” 
)Have had nearly every medical test done, all negative. Might try for genetic testing. Is this negligence, when doctors have even not agreed to see me, and say, ‘I don’t know what to say…’ ?..Is it ok to just ‘leave’ a patient like this? Am ready to jump off cliff, throw in towel…and something MUST be wrong? Even if tests are negative, or is it just ‘in your head’…
Am DESPERATE , feels like I’m dying
Diabetic nerve pain?
https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/symptoms-causes/syc-20371580
Have your doctors considered Lupus ?
https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790
I have a friend with lupus, and know it can vary with each person.
I hate to suggest it but look at this possibility.
This might be very basic but… have any of these docs run blood tests for potassium or other electrolyte levels?
Especially if an addition to diabetes, you are also taking some diuretics (like many blood pressure medications but there’s other reasons to take diuretics too) your electrolytes can get out of whack with some of the symptoms you mention. https://www.healthline.com/nutrition/potassium-deficiency-symptoms#section8
I have been diagnosed with this last year but my symptoms are a little different. Muscle pain is common. https://rarediseases.info.nih.gov/diseases/8310/myotonic-dystrophy-type-1
Obviously something is very wrong, and the fact that they don’t know what it is doesn’t mean that it’s “in your head”.
As the old saying goes, lack of evidence is not evidence of lack.
One thing that you need is some doctors who are both smarter and more humble. Keep looking.
Thanks.
M.
@sweetgal88 A few things to consider PAD and/or low Vitamin D. Have you ever had any dopplers (for PAD) or your Vitamin D level checked?
Claudication symptoms include muscle pain or cramping in your legs or arms that’s triggered by activity, such as walking, but disappears after a few minutes of rest. The location of the pain depends on the location of the clogged or narrowed artery. Calf pain is the most common location.
In adults, vitamin D deficiency can lead to osteomalacia, resulting in weak bones [1,5]. Symptoms of bone pain and muscle weakness can indicate inadequate vitamin D levels, but such symptoms can be subtle and go undetected in the initial stages.
https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/
@sweetgal88, How ya’ doing? What state are you in?
Where are we referring her - what kind of specialist?
If you’re wondering where to go for PAD, I’d suggest a cardiovascular surgeon or cardiologist. I started with a cardiologist, but eventually went to a cardiovasular surgen. Had I known, between the two, I would have started with the cardiovascualr surgeon.
They (the cardiovascular surgeon or cardiologist) can order the lab test for the Vitamin D. Or a family doctor for that matter could order the Vitamin D.
Thanks for reply, no PAD or Vid D, no Dr./psychiatrist has ANY idea what’s wrong or what to do or how to help AT ALL…very sad and scary that they just LEAVE a patient like this without pursuing anything further…I’ve had to ask for EVERYTHING, which of course nothing works, or I can’t even tell, so this just seems like a permanent thing :(…I don’t even know HOW to function/live like this, and just have to have this happen all the time, which now makes it seem to me is it all in your mind? I’m afraid to even wake up anymore/even LIVE, and have lost almost all ‘faith’ in God
What have they tested you for? What types of Doctor have you seen?
neurologists, rheumatoid, PCP…had mri of head, spine, lots of bloodwork prob tested for everything, EMG…all negative…Had physical therapy, did nothing in long run…tried a few meds but nothing helped and they just say ‘idk what to say/do’ …saw therapist, he said they should be doing A LOT more, and helping, figuring out ANYTHING to help at all, treatments, meds, anything…they just leave you …and I just have to let it go and live like this? Is that right feel like I’m going to die or throw in towel…sry to talk of something other than diabetes here, don’t know where else to ask…can ppl talk of other issues here than diabetes?
They most certainly can. If you are touched by diabetes this place is for you. While not every condition is caused by diabetes, diabetes touches almost every condition.
Your discussion is welcome here.
I guess I’m gonna refer you to Mayo clinic, just because I know that they will test everything they can possibly think of and consult with a wide variety of specialists. Unfortunately, not everyone’s insurance works there (mine doesn’t). They have physical locations in AZ, MN, and FL. But, when it matters to a patient, I know that they will make an effort. That alone, might make it worth it to you to consult with them. They will try. They will want all the previous records and they will re-run all tests from the start because they don’t trust other people’s tests. They like complicated problems. I think you have done enough investigation to prove that you are a worthy patient. That matters.
That is one possible route to pursue. Just brainstorming here.
Hi, in MA…thanks, am afraid i’ll go there or anywhere and they’ll know nothing/find nothing/DO nothing, AGAIN…or that they’ll say ‘she’s crazy’…that this is just how it’ll be permanently…also that no Dr referred me there or anywhere else, or even said ‘we’ll find an answer’, doesn’t give much hope :(…I don’ even REMEMBER myself/life before this…I ask why God doesn’t help too
The Mayo Clinic doesn’t do that.
The Mayo will want all previous medical records related to the problem.
They will want to see that you have explored the issue in depth and have come up with nothing. Mayo is last stop shopping. They help patients that no one else will/can help. That is what they do.
If that is not an option, then you could try PT again. Maybe PT is a permanent thing.
Will Mayo help even if you don’t “have” something,/disease… but still be able to help what’s “wrong”, even if it’s impossible to help/fix?? Or if it’s just “in your head”? :(…I feel there’s no way of me getting better and this is just permanent
Mayo will help. But, you have to see if an appointment is even possible with your insurance. If not, sometimes they see people anyway
Sweet Gal,
Do you get cramping muscles in your calves when you walk, but the cramps stop when you stop walking? Do your legs frequently get “restless” when you’re not moving around? And, last question, did the rheumatologist you saw check you out for fibromyalgia? It’s a special, I guess you’d call it a “touch test”, where they press on various parts of your body to study your reaction. Thus far, the tender point exam is the only way to diagnose FM, and sadly not all rheumatologists are expert in that.
It took me over three years to get a diagnosis…went through EMG’s, muscle biopsy, what seemed like gazzillions of blood tests. Finally, I read about FM in a Harvard Health Letter and realized that my symptoms mimicked FM, found a rheumatologist who treats it, and while there’s no cure, I learned how to live with it in a more productive way. Oh…adding that fatigue is a huge component of FM.
Anyway, that might not be what you have, but don’t give up. Keep a log of your symptoms, when they happen, what you ate before, how your sleep is, does the weather make things worse or better, etc. It’s most helpful to doctors when you can describe EXACTLY what brings the symptoms on, what makes them better or worse, etc. Keep a detailed log for a few weeks, and then go back to the doctor you liked the best and ask for help again. And, you might want to synopsize your symptoms for us after you track them for a few weeks.
Again…don’t give up! You are worthy of having this figured out.