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Anyone else with CFS suffer from achy legs?

Posted , 10 users are following.

JamieD82
JamieD82

Hi everyone,

I've been suffering with CFS symptoms for around ten years, but was only diagnosed in the past twelve months. For a while now, I've been experiencing a dull ache in my leg muscles, as well as in my hips. It used to only happen at night when I'd been lying on one side for too long, but now it's constant. Has anyone else experienced anything like this?

Thanks so much!

0 likes, 28 replies

28 Replies

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  • Oaklea
    Oaklea JamieD82

    Posted

    Hi Jamie

    I was diagnosed with CFS in June and apart from the more common symtoms of extreme tiredness, problems sleeping, poor concertration,blurred vision I found that the pains I get in my legs being probably the worst effect of this illness.

    My legs,particularly my calves, are painful,ache and often have twitches and throbbing. I find laying down or reclining in a chair the worst especially at night.

    I have been prescribed Amitriptyline and been on this for the last 3 months. I have found this helps alot with the sleep as I don't get woken up so much with the pains in my calves. When it gets bad I find the pains also affect my forearms especially the left forearm. At first I was worried it was a heart condition but have had my heart checked and all was normal so assume its just part of the CFS.

    I have also been referred to a CFS clinic and they have put me on a mindfulness course which I also find helps cope with this horrible illness.

    I hope this is of some help to you

     

    • JamieD82
      JamieD82 Oaklea

      Posted

      Thanks so much for sharing, Oaklea. I'm glad you're getting help from a CFS clinic. My doctor told me there aren't any specialists in my area, but I may do my own research into this just in case. Something like this would be incredibly helpful.

      Take care xx

    • susan556
      susan556 Oaklea

      Posted

      Hi Oaklea, like Jamie we have no local CFS clinics. On reading how it affects you is exactly how it affects me to the detail. Maybe i should give the Amitriptyline a go. Is there any horrible side affects to these?

      Sue x

    • Beverley_01
      Beverley_01 JamieD82

      Posted

      Hi Jamie D,

      I think the disproportionate level of cfs/me services is absolutely appalling. Am just wondering what your doctor classes as local? My 'local' cfs/me clinic is 38 miles away. They do however offer telephone appointments after the first session if required. Maybe ask how far away the nearest clinic is? I find it quite a trek to get to but, feel it is useful to me.

      Hope that is helpful

      B

    • JamieD82
      JamieD82 Beverley_01

      Posted

      Thanks, Beverley. My doctor isn't particularly accomodating, not helped by the fact that I see someone different every time I go. I definitely need to ask about a CFS clinic though. It sounds as if it could be really valuable.
    • Beverley_01
      Beverley_01 JamieD82

      Posted

      Yes, its definitely made harder by facts like that. I try to see the same doctor for cfs/me only things that aren't urgent but, like you, I have to have different doctors if i ring on the day. I hope you're able to get some help via a clinic soon If it Is available.

      B

    • Oaklea
      Oaklea JamieD82

      Posted

      Hi Jamie

      During the time of trying to get a diagnosis I , like you, saw several different GP's within my practice. I have now found one that understands that CFS is real and therefore somone I can trust.

      I would definately push for a referral to a specialist fatigue clinic even if the nearest one to you is far away you can have your consultations over the phone. Also I found relaxation helps you can listen to audio meditations for free via u tube . I would recomend mindfulness bodyscans or the book "mindfullnes for health" which you can buy as an audio book if thats an easier method to read.

      Let me know how you get on

      Oaklea 

    • Oaklea
      Oaklea susan556

      Posted

      Hi Sue

      I am on a very low dose 10mg so the side affects for me are minimal.

      I expect it affect different people in different ways.

      The only side affects for me at the begining were feeling very tired the follwing morning but this subsides after a while. The other side affect I had was a very dry mouth at night so worth having a glass of water by your bed. Aprat from that I have found it has really helped with my sleep although still get nights where I cant sleep due to pain or wrestless legs.

      Hope this helps!!

      Oaklea

    • JamieD82
      JamieD82 Oaklea

      Posted

      Thanks so much, Oaklea. Really appreciate the advice!
  • Rica
    Rica JamieD82

    Posted

    Hi Jamie,

    i was diagnosed  this week as having CFS.   My work has been great and has allowed me to take the rest of the week off.  I'm feeling really lost and not sure what to do to help my symptoms. My worst symptoms are not sleeping unless I take medication which makes me constipated and I don't feel I should be taking something every night . Also, day and night my legs ache and throb whether I rest them or not.  I'm waiting for an appointment with a CFS clinic but not sure how long that will take. what should I be doing in the meantime? I work three days a week and I've got three children and I'm really struggling, I can't afford to give up work and I don't particularly want to give up work but my job is quite intense, I'm a primary school teacher 3 days a week. Any advice of how make my symptoms manageable .

    would appreciate any advice x

    • JamieD82
      JamieD82 Rica

      Posted

      Hi Rica,

      So sorry to hear you're going through such a tough time. I would definitely post this as a new discussion topic. I'm sure there are many sufferers out there who have to balance work and family commitments, and they'll be able to advise you far better than I can.

      All I can suggest is what my doctor has told me. Namely, listen to your body. Rest if you feel you need to, do some light exercise when you can, and make sure to eat well. Most of all, take regular breaks and try not to be too hard on yourself.

      Take care of yourself xx

  • Alexi
    Alexi JamieD82

    Posted

    Yes, muscle pain a big problem for me. I take magnesium and vitamin d. Also take amitriptyline 5 mg to calm muscles popping and jerkin (have to cut smallest talent in half, fiddly little buggers)
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