Restless legs and arms

[raymondhowell]

hi Ray here fellow mds patient, I get restless legs and arms in the evening when I am tired, this has got worse over the last few months to the stage it can keep me up till the early hours ,not good when I feel some days like im not on top form anyway due to my mds ,i don't know if it is due to any kind of drug or not, I have also read that low iron levels can cause this ? so just thought I would see if it is common in mds patients regards ray.

[Claire]

Hi Ray - sorry to hear about this. I have had restless legs very occasionally and it is really aggravating and makes it very difficult to get to sleep. I have never considered that it might be connected to the MDS. That's an interesting thought.

I have also heard that it can be connected to low iron levels. This is possible in my case because my ferritin levels are quite low.

I have no advice because luckily I don't get it too often so haven't done anything about it but maybe there is some medication that could be prescribed?

Take care

Claire x

[raymondhowell]

Hi Ray - sorry to hear about this. I have had restless legs very occasionally and it is really aggravating and makes it very difficult to get to sleep. I have never considered that it might be connected to the MDS. That's an interesting thought.

I have also heard that it can be connected to low iron levels. This is possible in my case because my ferritin levels are quite low.

I have no advice because luckily I don't get it too often so haven't done anything about it but maybe there is some medication that could be prescribed?

Take care

Claire x

Hi Claire how are you keeping hope all is well, i think i might need to see my gp about my arms and legs it is driving me nuts,i dont know if it is connected to my mds or not but i must try and get it sorted, are you are you under dr ragavan at the qe he is the mds man and good too, im seeing him next week for blood tests so hope they will be better than last test i had, well speak to you soon best regards ray.

[Claire]

Hi Ray - yes I am under the same doctor! Is he the main one at the QE for that condition? He always seems very interested in the research side of things so that's a very good thing.

I'm ok at the moment but not brilliant. I have had to have 2 lots of antibiotics during the last 4 weeks for different infections. I also seem to be suffering worse fatigue than usual at the moment which is quite debilitating. I might post a topic on that actually as I wonder if it's a common symptom of MDS. I also get a lot of aches and pains in bones and muscles.

Oh well! Could be a lot worse.

I would definitely see the GP with your restless legs and arms. I'm sure there must be something they can do. Let me know.

Claire x

[raymondhowell]

Hi Ray - yes I am under the same doctor! Is he the main one at the QE for that condition? He always seems very interested in the research side of things so that's a very good thing.

I'm ok at the moment but not brilliant. I have had to have 2 lots of antibiotics during the last 4 weeks for different infections. I also seem to be suffering worse fatigue than usual at the moment which is quite debilitating. I might post a topic on that actually as I wonder if it's a common symptom of MDS. I also get a lot of aches and pains in bones and muscles.

Oh well! Could be a lot worse.

I would definitely see the GP with your restless legs and arms. I'm sure there must be something they can do. Let me know.

Claire x

Hi Claire,how you doing,i read your new topic on fatigue,you got some good replys, i also think it is to do with mds in general, it can hit me hard some days in fact most days i come home bushed and need a 30 min to 1 hour nap this boosts me up for the rest of the evening, i read that you should do some form of exercise, but after long day at work i dont have the get up and go for this,i might be wrong but i opt for the quick nap, i hope your feeling better after all your antibiotics,keep well dont let this get you down keep well,i will speak to you soon regards ray

[Claire]

Hi Ray

Thanks for your reply and your support. I do exactly the same as you - I opt for the nap too! I just can't face pushing myself to do exercise if I am already feeling drained.

Did you manage to see your GP about your restless legs and arms?

Hope you are feeling ok. I'm feeling ok today - finally off the antibiotics!!

Take care

Claire x

[Claudia R]

Hi Claire and Ray

Restless arms - no, but restless legs - AAAAAGH! They drive me mad in bed, and it doesn't seem to matter whether I've just had a transfusion or have a low Hb because I'm soon due to have one. When one needs as much rest as possible because of being anaemic, it doesn't seem fair to be tossing and turning for several hours! And then there is the cramp - but I'm not really sure whether that is related or not, so won't raise that here!

You might consider using a gel or spray such as Boots Reviving Foot Spray - I have found this really helps most of the time, and it smells really nice too! I usually try going for a short walk around first, to let the bed cool down, and then feel much more refreshed and able to settle down.

Hope you both find something that works for you. Take care,

Claudia

(Haven't set up a signature, but have RCMD; transfusion dependent since Nov 2009; 4-weekly red cell transfusions and chelation with desferal 5x per week)

[raymondhowell]

Hi Ray

Thanks for your reply and your support. I do exactly the same as you - I opt for the nap too! I just can't face pushing myself to do exercise if I am already feeling drained.

Did you manage to see your GP about your restless legs and arms?

Hope you are feeling ok. I'm feeling ok today - finally off the antibiotics!!

Take care

Claire x

Hi Claire, hope your well,good to hear your off the antibiotics, no i have not had time to see my GP yet i we have staff on holiday at the moment as soon as we get back to normal i will have to sort it out, i am at QE tomorrow for my blood tests so i hope all is good will let you know, keep on napping speak soon ray.

[raymondhowell]

Hi Claire and Ray

Restless arms - no, but restless legs - AAAAAGH! They drive me mad in bed, and it doesn't seem to matter whether I've just had a transfusion or have a low Hb because I'm soon due to have one. When one needs as much rest as possible because of being anaemic, it doesn't seem fair to be tossing and turning for several hours! And then there is the cramp - but I'm not really sure whether that is related or not, so won't raise that here!

You might consider using a gel or spray such as Boots Reviving Foot Spray - I have found this really helps most of the time, and it smells really nice too! I usually try going for a short walk around first, to let the bed cool down, and then feel much more refreshed and able to settle down.

Hope you both find something that works for you. Take care,

Claudia

(Haven't set up a signature, but have RCMD; transfusion dependent since Nov 2009; 4-weekly red cell transfusions and chelation with desferal 5x per week)

Hi Claudia, good to hear from you,my legs do drive me nuts,i have tried everything from drinking quinine ,walking ,even standing in bowl of cold water its mad but you try anything,your right we go to bed already tired and spend half the doing the tango,we then start the day right feeling tired ,anyway hope your ok with your mds and hope you get easier nights,good to hear from you kind regards Ray