Unexplained leg pain, has anyone any experience of this?
Posted , 10 users are following.
ctorQuestion12-11-2018
Has Anyone experience of this?
I think my problems in my legs started four years ago, after spending a life incredibly fit (I am an ex professional horse rider and still walked up to 10 miles per day) I started to get a sensation in my left thigh as if a few muscle fibres were tearing on lifting a heavy weight, the sensation would disappear as quickly as it arrived and left no symptoms or muscle weakness. This continued on for months until one day I ran down the stairs and tore an inch and a half hole through the soleus,gastrocnemius and fascia of my left calf. I had extensive physio but continued to advise that my leg did not feel right but felt as if it would re-tear at any given moment. The doctors and the physio told me that I was wrong and that it was fine. I continued to walk until 19mths later and it re-tore, I also felt at the time that my right calf had also torn in the same place but on ulta sound the left showed the tear but the right showed nothing. I continued with physio until four months later when the leg tore again and then proceeded to get worse. At this time also my leg was a blueish colour and foot cold. Trying any type of rehabilitation immediately resulted in a set back until the same pain came in the right leg and I was on knee pads and crawling with not a good leg to stand on. To cut a long story short, after a succession of private medial tests and MRI scans I am still unable to walk any great length or at full speed. I now suffer with random pains in my thighs and legs, from the feelings of electric shocks to be kicked in the muscles, dull throbbing aches and tenderness. Also my left calf muscle has now deteriorated and my tendon is clearly visible but I have no diagnosis and have been advised that there will not be one forth coming. Whether its related or not I dont know but Ive also had hair loss and scalp itch, again investigated but told there will be no diagnosis so it continues on.
I am desperate for help now, Ive had MRI scans, blood tests, a needle pushed into my muscles to determine the electrical activity, an electrical current held on each nerve, checked out by the vascular surgeon and also my back checked but all drew a blank. The specialists all proclaim that they have never seen the like as all the way through I have held on to full muscle power. Even the pain specialist had never seen it.
All thoughts and experiences are welcome.
Thank you in advance.
0 likes, 12 replies
patricia63303 Guest
Posted
Some of this is familiar to me, as my pain started in the lower right leg and slowly moved to my right inner thigh and then my left inner thigh and eventually to my shoulders. This happened over 4 months. I had lots of tests that showed nothing. No high CRP or sed rates. My muscles were not
weak, just in a lot of pain that "moved" around. Physical therapy didn't help. For me, that plus the fact that the pain was much worse in the early morning was enough to convince my primary care doctor to give me a trial of 10 mg Prednisone. The pain was 60% gone in about three hours. Perhaps you can convince one of your doctors to give the Pred a try. If it works, this is probably PMR.
david34720 patricia63303
Posted
i am experience this right now, but hasnt gone to my upper body, just inner thighs past couple days, did you have a bull kind of burning sensation at all. I had ultrasound done of my right leg and nothing showed. i have leg weak at times, and right calf muscle very tender and now moved up the leg. I have been very ill and they cant figure out why for 4 months practically in bed going doctor to doctor. I also have weak numb hands, that change complextion tannish colour quite a bit. do any these symptoms sound familiar? my blood tests are normal, esr is even really low, i have no marks, no change in colour on legs
Guest patricia63303
Posted
Thank you Patrica, Ill look into that.
Im glad that you found something that helped you.
Guest patricia63303
Posted
Thank you Patricia.
Im glad you found something that helped you.
Guest david34720
Posted
Hi David.
No burning sensation, more of a tearing sensation and coldness to the limb in the initial stages.
The symptoms are not familiar but seems just as mysterious.
Flutterbie57 david34720
Posted
David I would describe my polymyalgia pains as burning. I had Fibromyalgia for years before new extreme burning pain set in, in shoulder/neck, and hip area overnight. I was also diagnosed then, a bit like Patricia - if prednisone helps, it is probably PMR. It did help so I accepted the diagnosis. In your post a few days ago, Eileen posted some sites (or the new site posted some sites for her). I discovered then that pred can mask other problems. I did read all sites and one of them mentioned colour change in hands. I have been on pred for over 3 years now and my memory has faded so much, I cannot remember what particular problem it was associated with. I hope you can find it.
Flutterbie57 Guest
Posted
Second opinions, alternative therapies, sometimes relief or diagnosis has come from unexpected places for me.
Three times in my life I have got relief for injuries , from unexpected places after Doctors and medical tests did not help or solve my problems.
I suffered for 9 months with a very painful foot. I spent a lot of money, suffered a lot of painful therapy and the 'Injury' was eventually relieved in about 60 seconds, by a Chiropractor who was actually treating me for a different injury. She was shocked by the diagnosis I had from a Dr, a Podiatrist, and a specialist Asian alternative therapist. They were concentrating on my foot. Chiro massaged the outer side of my leg, by my shin bone and the foot pain was relieved almost instantly.
I suffered for maybe 5 years with an ankle injury. That was fixed in minutes also by a sports coach ! Recently I got instant help for a 2 month long knee problem, only because I had to see a different Chiropractor while away on holiday.
My problems/injuries were minor in comparison to yours, but in all 3 incidences I almost accidentally got relief from unexpected places. I didn't have all the medical testing that you have had, but I did have xrays. From my personal experience, I think if one Physio, or Doctor cannot give you help/relief or diagnosis, try another. A different set of eyes, sometimes looks at the problem from another angle.
I do hope someone can give you help. Take care
Guest Flutterbie57
Posted
I've had nine people look at this so far, lll keep going with it, thank you for you reply, Im pleased you found a solution.
Flutterbie57 Guest
Posted
I got relief for some smaller problems, but I am still suffering the bigger problems like PMR and Fibromyalgia. I always assume(I know that is unwise), that all my problems are related to the 2 bigger problems, but that is not always the case. It is always a wonderful relief tho, when any pain goes away. It gives me hope.
Flutterbie57 Guest
Posted
I got relief for some smaller problems, but I am still suffering the bigger problems like PMR and Fibromyalgia. I always assume(I know that is unwise), that all my problems are related to the 2 bigger problems, but that is not always the case. It is always a wonderful relief tho, when any pain goes away. It gives me hope.
EileenH Guest
Posted
It doesn't sound like anything directly related to GCA or PMR so there isn't a lot I can say except to ask if anyone has done any blood flow studies? Some things you say could be related to vasculitis but they are still strange. You don't say what specialists you have seen - did it include a rheumatologist at any point?
Guest
Posted
No, Ive seen physio's, a vascular surgeon, two neurologists, a muscular skeletal specialist, a pain specialist and an acupuncturist along with the GP no one in rheumatology.