muscle heaviness in lower legs and upper arms for > 20 years

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Hello

I have suffered from a 'heaviness' in both lower leg muscles and both upper arms which comes on during exercise but also felt at rest and is worse in heat. I felt the symptoms in my lower legs first (in 1995 when i was 21) whilst jogging then 3 years later in my upper arms when swimming. In both cases, it was sudden onset.  The symptoms reached a peak in 1996-1997 when i couldn't even stand up and moving around was exhausting. Since, the ache has eased but is present every day.  It's not painful, there's no numbness, pins and needles etc... it was just a very weary ache.  I still keep active but within minutes of starting a run, my legs become very heavy, lethargic.  It feels like running in treacle or running into a strong headwind. If can manage 5 press-ups before my arms feel like they are on fire. 

I have seen three neurologists over this time, had MRI legs, neck and spine, spine with contrast, cardio-vascular investigation, exercise ECG stress test and Echo, fitness test by exercise physiologist, ruled out PAES,tried myofascial release, Buteyko, Bowen. CK levels (pre and post exercise) normal. Replaced mercury teeth fillings. Tried variety of supplements e.g. d-ribose, carnitine, BCAA, Co-enzyme Q10, NADH, Sam-e.

Red flags - 

Marked reduction in muscle fibre fat content; Muscle biopsy, 2002

DHEA  was 0.21 (reference range 0.25 to 2.22); June 2017 

Cortisol levels normal

Possible Underactive thyroid (T3/T4 ratio is 0.60)

Low iron levels

Intermittent chest rash

Peculiar speech defect - sometimes struggle for fluency.  Weak voice.

Keto diet (<20g carbs per day, high fat) for three weeks made symptoms considerably worse. Once resumed high carb diet, symptoms immediately improved.

Other observations:

Leg muscle can 'throb' even when in bed.

Running barefoot easier

Hot baths or showers make symptoms worse.

Just going up short flight of stairs brings on the heaviness but as soon as i am at the top of the stairs, the symptoms fade.

any thoughts?

James

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13 Replies

  • Posted

    Do you have pain in your feet like plantar fasciitis? I feel like some of my pain started in my feet and worked upward into my legs. But I'm not sure, I do remember noticing a pain behind my knee. I'm starting to wonder if a dozen years ago when I pulled my hamstrings that it never really recovered the right way. It's ridiculously frustrating

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    • Posted

      Hi, nope, i did have shin splints in one leg at the time but nothing else.  my lower leg symptoms happened suddenly - i can remember exactly where it started - i was jogging up a hill when my legs became weary.  Then a few years later the same thing in my arms, again i can recall the exact moment!
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  • Posted

    Your symptoms are very strange but I understand. Have you seen a neuromuscular neurologist? They specialize in these areas better than neurologist. You need a emg. I have heavy legs sometimes but I had guillan Barre syndrome 18 months ago. I had axonal nerve damage it was in my face first so miller fisher. I hope you find out what has happened and you can get something to help relieve it. The doctors still can't help everything it took them mo ths to figure out what was wrong with me and I sufferred the whole time thought I was dying. I have residuals now because I received no treatment. It can be very upsetting. I hope you get better. Wishing you the best.

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  • Posted

    Hello....I have the SAME problems with my arms and legs as you do.  For years now (since in early 30s) they get heavy and tired as soon as I start to use them, so much that it hinders me doing normal things and I have the same problem with the stairs. It feels as if there is not enough oxygen going into the muscles.  I have to have rests inbetween doing things because I tire easily.  I am anxious to know WHY I have this problem.  I did have glandular fever in my early 30s,and wondering if this is the cause of my muscles being so weak and tired.  A doctor has recently said that it is possible to see if the virus is still active in my body, as have been wondering if that is the cause.  I am suppose to have heart test done in case the problem lies there, but over the years I have also had a lot of tests done (including the lungs checked) but nothing has been found.  I have been told I do have Fibromyalgia...though I don't believe that muscle weakness is a typical symptom.  

    It seems like you have been through a lot of tests too, and so can understand how you feel in wanting to know why you have this problem....the same is for me too!!  I worry that it will get worse as one ages.  There seems to be not many people with this muscle problem, so it is hard for others to understand why it makes life difficult at times.  Surely there must be some medicine that can help !!

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    • Posted

      thank you for your reply, yes still searching for a cure and so many peculiarities.  Thing with me, is that it reached a peak back when i was in my mid 20's. i'm now 44 and symptoms pretty much part of my life but no where near as bad as they used to be. the symptoms are also constant although hot weather makes them more intense.  i didn't have any fever around the time. i did have some infection 2 years before but nothing major.  the lack of oxygen is how i feel too - especially when talking sometimes but when i try ad run it just feels like i am out of gas and running with the handbrake on.  Even doing Yoga of all things makes my legs ache! I can feel it when doing a lunge or any sustained hold.  It seems any exertion of the muscles brings on the heaviness.  Baffling but ain't giving up.  

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    • Posted

      Hi Carol, your description is just about perfect for McArdle disease.  Though typically only  diagnosed in our 20s, 30s and even much later, when looking back it is usually possible so to recognise symptoms right from childhood. Please check out the site I mentioned to Jambam. 
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    • Posted

      Hello Andrew....sounds very interesting hat you told me about McArdle disease.  I have never heard of this before and wonder if my doctor will know it, when I am going to mention it to him.  Even when typing this, I find my arms start to feel heavy, which shouldn't be so normally.  I often feel I don't get enough oxygen in my head....is that also a symptom?  I remember even at school I had problems doing any sport/exercises, so maybe my illness started then already without anyone knowing!!  

      I have meanwhile been reading about this illness.....interesting that one lacks glucose in the muscles, would make sence therefore for the tiredness.  I have for a long time craved (sometimes) for sweet things to eat (could that have something to do with it) - maybe with my body hoping to give me more energy.  I have a tendency to easily put on weight, even though I don't eat in excess, and careful "what" I eat - it doesn't make any difference.  I feel I am too slow to burn up the calories daily.  I know it would help to lose weight, but is a big problem for me !!  

      I would like to know if there is any specific medicine one can take when diagnosed with this disease...to ease the muscle tiredness? How can this illness be diagnosed?

      Thank you for your reply.....I will certainly now bring this up with my doctor during my next visit.

       

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    • Posted

      Hi Carol. You are certainly mentioning all the right things for it to be McArdle's. The light headedness might be due to low blood glucose levels when we start activity. I remember it being particularly bad when trying to run around the playground at school - 60 years ago! Your primary care doctor will not have heard of it, almost 100% guaranteed. It is an ultra rare condition, about 1 person in 250,000 is diagnosed, though our best estimate is that the true incidence is 1 in 100,000 or greater. I would suggest that you ask for a Creatine Kinase (CK or CPK) blood test, which is simple and low cost. If you have McArdle's it is about 99% sure to be substantially raised. That would be enough for your doctor to then refer you to a neuromuscular specialist. McArdle's and other conditions that can cause raised CK can be diagnosed by genetic testing. Whereabouts in the world are you? I am in the UK and am the co-ordinator for the 311 of us diagnosed with McArdle's here. We have lots of information to help people with McArdle's. There is no drug treatment yet (one is being studied) but there is a great deal that can be done to improve your condition. There is a dietary approach currently being studied which can help with McArdle's and with weight loss.

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    • Posted

      Hello Andrew

      I see that McArdle disease is very rare, I would be really amazed if I have this. Are there other illnesses with similar symptoms? I do seem to breathe very shallow, could this be the cause of weak muscles around the lungs.....I have had this for some time, which then seems to give me less oxygen in my head, especially when bending down.  I also find it difficult when kneeling/bending to get myself up, as my legs feel so heavy - this problem seems to have got worse.  Could this more to do with circulation problems in my hands and feet?  I have also swollen ankles/insteps, more so in warm weather, making it impossible to wear a lot of my shoes.  In the mornings my ankles are not swollen, but think maybe all this is to do with bad circulation and not muscle weakness.  I do feel though that my feet muscles are weak and have dropped arches now no doubt from that.  It worries me greatly that my muscles everywhere are all weak, and todate have never found a doctor who can help me solve the problem.  I tire easily, which is a big hinderance when wanting to get jobs done; which looks like lazyness to others, as I am afraid my problems are not seeable!! I find everything much more difficult in the hot weather, though suffer also from coldness too. Is that CK blood test to do with the kidneys?  I do have osteo-arthritis in many places, which could be the cause of some of the symptoms, such as muscle weakness, but doubt the light headedness, though I do have OA in my upper spine (neck area).  My father did have RA, but I have been told I do not have this.  I have lived for many years in Germany, but do plan to return to England in the near future. 

       

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    • Posted

      Hey Carol, I'm torn between thinking this is muscle vs. nerve. My feet started to hurt, then my calves kept moving up the thighs now in the arms. I did tons of blood tests tests nothing. I has a muscle biopsy shows I have muscle atrophy but no definite reason why. Maybe 15 years ago I pulled my hamstrings playing softball and I always wonder if I've never recovered from that. I keep wondering if it could be pinched nerves in my neck, back or feet. I do feel tired and winded, but I don't have any of those other symptoms. Good luck.

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  • Posted

    You might like to consider McArdle Disease as your description is a very good fit (I have it and am the coordinator in the UK, 311 of us here). You will find a page called "Could my problems be McArdle's" on the web site of IAMGSD(dot)org. One thing that is against it is the normal CK, which is unusual, though not impossible, in McArdle's. Also, have you considered fatty acid oxidation conditions such as CPT2?

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  • Posted

    I didn’t see anything about myasthenia gravis testing (MG), and some of your symptoms occur with MG. Particularly the weakness after hot showers, the sudden onset, and the heaviness in the legs and arms after exercise. MG is a very individualized disease, everybody’s is different, some are a lot different. There are three blood tests that are currently used for diagnosis; ACH Receptor Binding, ACHR Blocking AB, ACHR Modulating AB. Next time you see a doctor you might ask to have them run.
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