Lower limb heaviness for 20 years- still no diagnosis

In a nutshell, I have suffered from lower limb and upper arm heaviness for over 20 years. There has never been any numbness, pins and needles etc… Lower legs just feel like dead weights. Symptoms worse in hot weather. Neuro-muscular diseases have been ruled out. Only note made was ‘marked reduction in muscle fibre fat content’ from a muscle biopsy. I have had an unsuccessful fasciotomy. I have also had back, spine MRI (and with contrast). Full Cardio-vascular examination with echo. Also ruled out PAES. The only other symptom is a speech impediment/poor breathing which is always worst first thing.

I’m a 43 year old male athlete who has suffered with bi-lateral lower leg and upper arm ache/heaviness for over 20 years. Symptoms first noticed in 1995 (21 years old) – I felt the heaviness in both lower legs suddenly whilst running. I have suffered from the condition every day since. Thankfully the ache reached peak intensity in 1997 when even just standing up was excruciating. I couldn’t run and walking was more like a slow shuffle. Legs felt like lead weights. Same symptoms presented in upper arms in 2000, again with sudden onset. The ache is still present in lower legs and arms but does vary in its intensity. Walking is tolerable but going up stairs or running will immediately bring on the symptoms. Some days are worse than others but every time I run I endure the symptoms. For the first few minutes the running is OK but gradually the muscles in the legs become weary and if I was to continue for over 20 minutes my running is reduced to a very slow shuffle. As soon as I stop running, the weariness fades very rapidly.


• I have never experienced numbness, tingling, pins and needles in limbs. Just this heaviness
• Feels like I am running in treacle or waist high water at worst. It’s never pain but an incredibly exhausting/burning sensation like the lower legs are about to burst. Once I stop the leg ache immediately fades almost to nothing.
• When running at max, feels like I am over-heating.
• Legs ache a lot more in hot weather and conversely better in the Winter
• Upper arms also fatigue on weight-bearing activity or used vigorously. For example I can do 15 press-ups but beyond that incredibly hard work to continue. Just doing a single press-up can be excruciating beyond a certain point. When sprinting, pumping the arms also brings on the ache.
• Legs and body ache when standing in hot shower/sitting in hot bath
• I find running barefooted easier and quicker
• Instant and intense leg ache upon any intense effort e.g. running up a single flight of stairs, running on soft ground. Fades immediately upon cessation of effort
• Legs even feel weary when seated in the office in hot weather
• Symptoms developed in both upper arms whilst swimming. Again, it happened suddenly. I can swim OK in cold water but in a heated pool I can barely manage a few lengths before my arms become heavy
• Can’t explain it but speaking feels like hard work and quickly fatigues. Voice becomes hoarse, weak. Usually worse in the morning but any sustained talking and my voice quickly tires. Even when not talking, throat feels like it’s being squeezed.
• Left arm feels numb when running
• Do have an occasional skin rash on back and chest
• I did donate blood for the first time around the time the symptoms appeared.
• Low Carb diet also worsened symptoms considerably
• Iron supplement had short term benefit
• RBC count is 4.37. Haematocrit is 0.399.
• RA Latex slightly raised – 20.00
• Diagnosed with underactive Thyroid. Prescribed Thyroxin but no change.
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