Post viral fatigue / symptoms? pins and needles, weak legs

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Hello everyone,

Much good wishes to everyone. I was wondering does anyone suffer from pins and needles in the legs (constantly) and hot and cold flushes in the legs that lasts a couple of seconds and muscle twitching. Sore heels/legs, These symptons are freaking me out. I am finding these symptons are worse in the winter...

For the past 3 months I have been taking vitimin supplements with not much effect. Still perservering though...

Best wishes,

Elle.

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  • Posted

    Hi Elle

    I suffer from pins and needles and numbness and tingling down my left arm. I have terrible pain in my left arm and shoulder that radiates across my collarbones, and on very bad days extends down my right arm.  I assumed the pins and needles and other weird sensations were caused by nerve inflammation as the pain is thought to be neurological.  I take gabapentin and nortriptyline, which up until two days ago was controlling it, but I've had a bad couple of days, and now my left hand and arm is tingling and I can feel a real stiffness in my left hand as I type.  I don't get the flushes, but I do twitch and sometimes strongly enough to describe it as jerks!  Usually when I relax - so if I'm sitting on the couch watching TV, or as I lie in bed about to drop off.  This happens in all the major muscle groups - calfs, thighs, shoulders and arms.  Sometimes it wakes me a few times during the night.  I'm not sure though whether this is a side effect of the medication or a symptom of the illness...

    I've been on high dose vit D since last January, and can't say it's made much of a difference, although I've only been diagnosed a year and it was a pretty rough year, with symptoms coming in waves and getting progressively worse. 

    So yeah, I share some of your symptoms!  This is really quite a scary illness, but what I have found is you can usually find someone who has got some if not all of your symptoms!

    Best wishes,

    Ellie

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    • Posted

      Wow thank you elliebee. I am sorry to hear of your symptons. They sound horrific. Mine are a pain. I am just amazed that post viral syndrome / cfs / me can bring about so many odd symptons. 

      I take a small dose of vitimin D. Not much just a general one from holland and barretts. Have not done much good. I work full time... It's just all rather annoying. 

      I am thinking of taking glucosamine for achy bones and joints. Have you tried this one?

      I was wondering if anyone has had much luck with manuka honey ? 

      General I find doctors useless. Perhaps because I am asking them too much or wishing an answer to the holy grail question: when will all these bizarre symptons go away. 

      Elle. 

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    • Posted

      It's such a strange illness because I tend to get good days still, when I forget how bad it can be. My pain is largely under control, at least it's more often uncomfortable though I get real spasms if I lift and carry stuff (like shopping bags). I worked full time up until Christmas, but I've had to drop to part time as I wasn't coping. Struggling a bit to come to terms with that a bit, to be honest. I'm not sure how we categorise M.E - I would have said I was mild because I am still (just) holding down a job.

      i haven't tried many supplements, although they are on my list of things to explore! I do mindfulness meditation and I'm a total convert to Epsom salts baths - fantastic for pain (I think we absorb magnesium from the salts through the skin?), and they help with sleeping. Also Clipper Sleep Easy tea - it is fantastic! Tastes like petrol but really helps to knock me out on particularly bad nights.

      My GP is great, in that he is sympathetic and has several Meeps under his care so he takes it seriously, but all he can do is treat particular symptoms (he is very good with pain management) and refer for supportive therapies. There is no cure and no single treatment, so I think docs are on a bit of a sticky wicket.

      Very best of luck - it takes time and experimentation but some people do find regimes and a combination of treatments, either natural remedies or prescribed drugs, that do bring them relief.

      el

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    • Posted

      Wow thank you so much elibee. I just have the pins and needles, and twitching in legs, weakness feeling  all in the legs. Haha well I got to laugh. But it does scare me. 

      Wow I really don't know what to suggest for you to help you too. It seems like you are doing a really good job as it is. I take vitimin d and cod liver tablet but can't say it's been that helpful. Well I have been taken it for nearly three months. 

      I try to take more supplements. X. Many thanks for your kindness. I know some sufferers have had it for years. I only had it for three months now so I try to clue myself up on this and help everyone too. 

      Elle x

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    • Posted

      It's great that you have a good doctor and seem to have your symptoms under control. Be careful, though. This disease can rear its ugly head and do nasty things if you overdo it. This happened to me, and I'm still suffering with these nerve symptoms 1 year later.
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    • Posted

      Hi Jackie

      Thanks for the wise words. I don't think it is under particularly great control - only the pain, really, and only the nerve pain - I just posted about the muscle burning pain that I get every day and painkillers don't touch that. I've only been diagnosed a year, and I'm still crashing every few days. Some crashes are mild and I can manage to get up and dressed, occasionally I can't get out of bed. I thought the pain was the worst symptom, until I found some relief and realised the fatigue and especially the PEM was dreadful. I've just dropped my hours from full time to 60%, working every other day to try and get a rest in between every work day. While my GP is really on the ball. He does tell me the only thing that will help in the long run is rest, so I have zero social life, and I try and make the best of life stuck mostly in the house. I'm hoping to hang onto my job and that working this way for the next year or so might give me a chance to find out what is going to work in the longer term.

      Sorry to to now sound so downbeat! It's an awful illness, really.

      ellie

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  • Posted

    Hi Elle,

    I too suffer from this and have done since about six months into my illness which started in 2007.  Over the years it has gotten progressively worse for me as the pins and needles moved from toes only to all my limbs and are now accompanies by a lot of pain.  I am particularly bothered at night and can feel it coming on from around 7pm.  I was prescribed amitriptyline, initially 10mg but now on 30mg and actually needing more but can't cope with the residual symptoms of using it.  I also take tramadol daily 100mg 4xday.  The needles and pain are accompanied by restlessness, so bad I writhe around all night and often spend nights walking up and down shaking my arms and hands.  This is neurological - the nerves are damaged in some way, either physically damaged or receiving miscommunication from the brain.  

    There are things to be done for it, now, which could help prevent it getting to the stage I am at.  If only I knew back then.  If you are able to do stretches and exercise gently (tai chi is good for both) this will help though it should be done on a regular basis.  Try as hard as possible to watch your weight - I have put on in the region of 6 stone since becoming unwell.  A lot of this is due to the severity of my CFS/ME in the first 3 years and thyroid problems.  Even without eating I was putting on weight progressively - I know its hard to believe but it is true.  It took a year for a CFS diagnosis and my thyroid has still not been stabilised.  I am now Type 2 Diabetic and diabetes can also cause the symptoms.

    Massage also helps and is absolutely wonderful anyway.  You can use some essential oils and get a partner or friend to massage you preferably after your stretching and/or gentle exercise. (Please don't make your CFS/ME worse by overdoing it)  I have found lavender and peppermint particularly good but everyone is different.  It would be useful for you to research this and make your own choice.  Please don't use essential oils without information as some can be harmful used undiluted.  There are lots of resources on the internet - if you look up essential oils and peripheral neuropathy that would be a good starting point.

    I also suffer from the perspiration and flush problem despite having had an early menopause and being period free now for about 14 years (I am 54).  I have never managed to control this and would be very grateful for any advice or information.  You do have my sympathy - it is just awful.  If you think it is possibly hormonal you could try milk thistle (I think a lot of the problems in CFS/ME are related to the pituatry gland which regulates hormones)

    So, get your thyroid checked, check for diabetes, watch your weight, gentle stretching and exercise for stimulation, massage with essential oils and perhaps some form of tricyclic antidepressant in a very low dose which is used to relieve the symptoms you describe.  I hope some of this is useful.  Please let me know how you get on.

    Linda

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    • Posted

      Gosh thank you Linda for your long post. I am very grateful. I am happy that I know my symptons are real because you have them. But equally sad for us both because we have these rotten symptoms. I am definitely going to try to relax the body more with essential oils. 

      I take vitimin D and cod liver oil. My friend said to take a spoonful of manuka a day so I will get some. Do you think you will have manuka too. 

      I wish you much much good health 😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄sending out positive energy to you Linda 

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    • Posted

      I forgot to say that magnesium and selenium are useful to take to relieve these symptoms.  I take magnesium 200mg and selenium 200ug at night.  I can't remember where I heard about it (brain fog) but magnesium is supposed to help with the restless legs and selenium is a good idea because you need it to help the magnesium work?  Something like that.  I usually go to Holland and Barrett because it is local and they have sales.  At the moment they are doing buy one get one for a penny.  (I have no investment in Holland and Barrett, haha - it is just where I go and their vits and supplements are pretty good).
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    • Posted

      Wow thanks shreddie. At the moment I take 

      Cod liver and vitimin d but because I am a "novice" at this I going to read up some more on this. I think I will take the magnesium and selenium too. 

      I was wondering can I overdose on vitimins?

      Blimey cod liver oil, vit d, and then I add magnesium and selenium. 😄

      Everyone here has been really kind. If I find some  info I let you guys know but it seems you are all pretty clued up on me/cfs. 

      All I keep reading about is pacing and resting from the nhs website. Oh and CBT too. But I do not see this alleviating the pins and needles sensation. 

      Elle x 

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    • Posted

      Hi Elle,

      I am a great believer in vitamin and mineral supplementation, especially for people with non specific multi symptom illness.  I personally take magnesium, selenium, coQ10, vitaminC, and evening primrose daily.  I also take VitaminD and calcium as directed by my GP.  Others I may take periodically for specific symptoms. However it is something which should be done with caution because overdosing is highly possible.  For example, VitaminC in high doses causes diarrhoea.  Easily remedied though - cut back on the dosage and all becomes normal again.  I think there can be more serious problems with other vitamins and minerals but normally with prolonged overdosing.  They aren't sweeties though, they are supplements and with everything, enough is enough and too much is bad for you.  Also taking some things together can have an impact.  It is not recommended, I have read, to take calcium within 4 hours of thyroid medication because of the possibility that it may interfere with the effect of the medication.  Not everyone agrees with dosages; some are over-cautious believing that we should get everything from our diet, others suggest protocols for specific illnesses that are well over the RDA.  I always try to read up about things and make up my own mind.  There is an interestin short BBC article on the subject called "The Problem With Taking Too Many Vitamins" which you may be interested to read (it is online).  

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  • Posted

    Hey, Elle:

    Yep. Since my relapse, I've been having pins and needles sensations in feet and legs. My legs often feel heavy or leaden, and weak. I sometimes feel as if I have trouble controllng my legs and walking, though I can walk. I also sometimes have jolts of pain in arms or legs, like electrical jolts. These symptoms were very frghtening when they first appeared, because I've had ME/CFS for years without those kinds of symptoms. From what my doctor has said, and my own research, I think these symptoms arise because the small nerve cells in the brain are inflamed. I had a nerve conduction test, but that came back negative, as only large nerve cells are tested.

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    • Posted

      Thank you jackie. Like my post to Linda I am sad and happy. My neurologist has asked that I go for nerve conduction test too but I am not so keen. My gut tells me he will not find anything. 

      I am also a bit apprehensive about the nerve induction test as I do not want the pins and needles to get worse. I hear the nerve test is painful ? 

      Many many positive energy to you 😄😄😄

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    • Posted

      Elle:

      My nerve conduction test was uncomfortable but not painful, because the doctor doing it was very good. I had one years ago that was painful. But when my test came back negative, my doctor said, oh, well, I guess it's your small nerves and not your large nerves that might be affected. He suggested I could get a biopsy. No thanks to that. So even a nerve conduction test is not definitive, and I question its usefulness. By the way, it did not make my symptoms worse.

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    • Posted

      What does a nerve conduction test consist of?  I have had MRI scans but not this test.  My doctor is actually very sympathetic and has sent me for all sorts of tests but hasn't sent me for anything like that.  Gosh, its good this, isn't it, where we can all exchange experiences, information and advice!

      Linda

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    • Posted

      I had this done last month. They apply electrodes to bits of your legs and arms, then apply small shocks of electricity to the local muscles. A machine measures the speed and extent of the muscle reaction to stimulation. If needed, they do a fine needle test, inserting it into the muscle and then taking a reading of its activity. I had the needle test - uncomfortable but not painful, except up at my most tender bit, my upper arm muscle. I'm waiting for an MRI now. And yes, this us bloomin great!
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    • Posted

      Thanks for that Elliebee - I think I might mention this to my GP because my lightning pains are getting more and more widespread and severe and are now almost constant.  It has certainly progressed and quite rapidly over the last couple of months.

      Linda

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    • Posted

      Well, brave person that I am, I kept my eyes closed during the entire test. It felt like the doctor was sticking needles in various places on my legs and running electricity through them. It sounds awful, but in the right hands, the test is uncomfortable with only some mild pain. It was totally useless for me, and did not yield any definitive results, so I wouldn't rush out to get it. As for this forum...I don't know what people with ME/CFS did before the Internet. Can you imagine? Your doctor tells you it's all in your head, your family and friends think you're just lazy, and you have no way to connect with people that have similar experiences and can inform and support you.
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    • Posted

      Well done for going jackie 👍😄👍😄👍. I like the last bit you wrote. Family thinks I am lazy. My doctors say it will go away and this forum definitely makes me feel less alone. And definitely - it is not in our heads.
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