Anyone else with CFS suffer from achy legs?

Brain and nerves
1

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!

2

Hi Jamie,

I used to have sever pins and needles as well as a dull ache in my left hand and arm. I found taking magnesium and vitamin D completely cured this (was advised by a CFS specialists to take this)

Hope this helps.

Haylee

3

Hi Jamie

Like Haylee I suffer with pins and needles and aches, I also take Magnesium and vitamin D but as yet still suffering with it. Its just another one of the lovely symptoms.

A hot bath helps when I'm really struggling 

4

When I first started taking the magnesium and vit D it didn't really work but once I doubled the dos the symptoms disappeared. Even find some days I have more energy. I definitely notice it when I forget to take them! All the symptoms come crashing in...

Best of luck x

5

Hi Jamie,  I've had CFS/ME since 2003, following a back injury which resulted in tears to two of the discs in my lumbar/sacral spine.  As well as having some  loss of sensation to the skin around my trunk I do also get hip pain/sacroiliac pain/sometimes sciatica.  I saw a physio some years ago, on and off for a few years. She gave me some stretches to do, for my hip pain do which do ease the pain to a degree.  The cold, damp weather make the pain worse. Hope the pain improves, Claire.

6

Thanks so much for your reply, Claire. So sorry to hear you've been in all that pain. Mine is more an annoying dull ache than anything, but I have noticed it gets worse when I'm cold.

Take care xx

7

I'll certainly give this a try!

Thanks so much.

Jamie

8

Hi yes Jamie was diagnosed with CFS 18 years ago now, its only been the last two that my legs are really bad and hips too. The smallest task seems to go straight to my legs, strange thing is its actaully  worst  after ive been laying down for a while like at night, wake up to go to the loo, when i get back into bed they throb like blazes.

Was put on vitamine D but when i requested a repeat prescription was told this would be the last lot! Dont know why?

Of course the achy legs and hips can be just the hips are playing up leading to a hip op in the future, My mum started of just like me and ended up with having both hips replaced but she hasnt gor CFS though but arthritis. Signs of hip problems are when lying on your side at night too.  Hard to say as when you have CFS they tend to blame that for everything.

Sue

 

9

I'm exactly the same, Sue. My legs ache worst when I'm in bed. Being 33, I'm guessing it's a CFS symptom rather than something else, but it's impossible to tell.

Thanks so much for sharing. xx

10

I think if its arthritis you get other parts hurting and swelling like knees and knuckles where as this doesnt happen with CFS, do you find it affects your vision as well?  x

11

Hi Jamie,

My legs were aching more recently and one leg has been locking up when walking? I had It xrayed and no issue there but when I mentioned maybe just cfs to doctor, he said it could be other things and referred me to physio. Check it out with your gp. I'm also taking vit d but with calcium. The locking up seems to have gone away last couple of days. With the aching it sometimes feels like there going to fall off. I also get restless legs with It sometimes. Hope that helps.

B

12

Sometimes my legs are very heavy, painful, thick feeling, like walking in mud. I just stop walking! It frightens me, and I never know when it's coming. I lie on my back, and sometimes my buttocks ache. It's something new. I suppose I should get up more.....but when movement means pain, it feels best to just stop.

13

Hi Claire,

I felt I had to reply because I too had a back injury, I too have loss of sensation around my trunk and cfs/me as a result. I am no longer ticklish. Are you the same? Mine was from a car accident.

B

14

Well, I'm visually impaired anyway, so it's hard to tell. I do find my brain gets sort of hazy though and it's really hard to concentrate. XX

15

Thanks, Beverley. I'll certainly mention it to my doctor next time I go. XX

16

Wow, how horrible. Perhaps see your GP about it as well. XX

17

The different symptoms with this condition are mind boggling. I often get one red hot cheek and ear! I put it down to my system thinking it has to fight something in my sinuses but just on the one side : )

B

18

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

 

19

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

20

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