Hi Guys, I have PV and I just wondered if anyone else is bothered with arms which feel so heavy and weak that I’m struggling to hold a newspaper for longer than about 10 seconds. I cannot hold my arms out long enough to fold sheets or large towels as they get very painful. This seems to be getting worse recently.
I have got a gp appointment in 4 weeks but beginning to think I should ask for one sooner.
Kind regards
Aime xx😺😺
Hi Aime, you are not alone, except with me it's my legs including groin area, sometimes I cannot find the energy to climb my stairs. I just can't work out if it is the PV or just old age, It almost feels sometimes as if I am at the start of problem hips it is so painful. I too will be seeing Haemo doc in about 6 weeks I have asked about it with my GP but it is always overlooked and told to do more exercise if I can't climb the stairs how on earth can I find the energy to exercise. beats me. anyway, hope you find a way out. best wishes \\\june.
Hi June, thank you for your speedy reply and sorry to hear you have problems with your legs. Usually when I’m fatigued my legs and arms are both like lead but at the moment it just seems to be arms only which are affected. I had to give up plucking my eyebrows last night as this was too much effort!
I think if it continues any longer I will ask for an earlier appointment with my GP. I know I would be giving that advice to anyone else so I suppose I should listen to myself for a change!!😹😹
Kindest regards
Aime xx😺😺😹😹
Hi Aime,
As June says you are not alone, I have experienced the weak heavy arms and legs feeling quite a lot, I have asked my GP if it's the PV but told it could be but, could also be age or my fibromyalgia.
The problem I have is I've also been told that I might never have had fibromyalgia as the body aches and pains and heavy feelings can be down to PV too!
So a bit confusing!
I have trouble making beds, putting the duvet on etc, but the thing I notice the most is holding the phone up to my ear, it's like the blood runs away and my arm feels so aches and heavy, so I swap arms but after a minute or two it happens to that one too!
Sorry I can't offer you an answer but just wanted you to know Im in the same camp as it were.
And yes definitely go and ask for an earlier appointment to see your haematologist.
Best of wishes and hope you get some relief soon 😊
Jacqui🤗 Xx
Hi All,
Me too...just the same,worse lately.Had tests for everything but whitewash,X-Ray's for head,thorax...all normal...I am assured it is the P V and I must adjust to it. Really weary with it all...best to you all.Sally
Hi Aime,
As others have said you are not alone, I experience the exact same feeling. I was diagnosed with fibromyalgia, and no one linked it,,or even mentioned that my platelets were over a million at the time. When I was eventually diagnosed with ET the haemotologist told me that kind of heaviness you describr can be caused by MPNs, and most likely I never had fibromyalgia. The only thing that helps me is to put cold water on my arms or cool them down in front of a fan while gentle rotating them, to help get the blood flow going. I am sorry I have nothing more that could be of help. I hope you find some relief and it seems to me that a month is a long time to wait to see your GP especially when you are struggling to hold a newspaper.
Wishing you relief
Susieq
Iron deficiency? I have at times got to the point where my arms and legs feel like lead weights and moving one foot in front of the other feels like wading through treacle. Invariably these points have coincided with my iron levels hitting all time lows. It’s definitely a different feeling from the general fatigue that characterises MPN. My diagnosis has now changed from ET to PV so I can’t take iron supplements. My body seems to have adjusted to the less than desirable levels of iron. Though I can tell when it really dips.
I think these symptoms can sometimes relate to a lack in vitimin d. Also I am convinced that taking Hydroxy causes a lot of side effects. Such as sluggishness, aches and pains and bad skin rashes/ ulcers.
According to my extensive tests ,no iro
Sorry,lost concentration!!! Anyway nothing a prob with all my vit tests either,take a vit d monthly,,so why aches and pains ,reckon we just have to deal with it all best we can.I have just walked with my dogs...slowly ,no playing much to their disgust! I am exhausted and short of breath......
Really wish there was an answer.....stress of course..I am back on a bit of help for that now,Docs say compared to the Hydrea and other Meds we swallow,it is nothing compared to all of that 'poison' if it helps to cheer us and get on with life then it is good,trying 'senior 'yoga as well.Hope everyone finds some relief from their symptoms....we are alive ,that is the main thing.Best to all.Sally
Hi Aime, I feel worse at the mo than I have for a long long time.Is it just getting older maybe.....until lately I managed my sculpture ,exhibitions etc,but now ,since last Nov,I struggle with every thing.We have had some worries,daughters bad accident being the main one,which makes me think a lot of my probs are worry and stress. Why that would cause the heavy arms ,legs,shortness of breath etc I do not know!!!One day last week I actually had a near collapse outside the supermarche,hubby caught me before I hit the deck and strong young chaps and a young woman abandoned cars and ran to help us ,lifted me (l'm a skinny thing fortunately) into the car,helped us with the chariot full of shopping,made sure we did not need an ambulance....I felt such a clot.....knew I was dizzy in the shop,should have found a place to sit ....Dr says I must learn to stop before getting too tired.Sorry ,that's a right old moan......thank goodness for this site !Hope you soon feel feel better .Sallyxxx
Oh Sally, you’re having a rotten time. I agree stress does not help and you’ve certainly got enough of that on your plate. Sending you a load of E hugs and glad that folk were kind and helped you. Please take it easy if it all possible, yes your daughter is so important but you need to consider yourself too, otherwise you will reach a stage that you’re not fit to help her.
I know what your doc means about stopping before you’re too tired but sometimes you don’t realise you’ve overdone it until it’s too late. It’s so difficult to judge how much to do, to get enough exercise, live, etc without overdoing it and then hardly being able to raise your head for days!
Thinking of you, kindest regards Aime xx😺😺
PS have a moan anytime you want, I think it relieves the stress a little when you share.xx
Hi Aime. I came home from work on Monday at 6 pm, don't really remember the drive and was asleep by 6.30, my alarm woke me at 7 am and it was an effort to lift my arm and switch it off. I called in sick and slept for another 7 hours. Was back in bed by 10 pm and as Wednesday is my day off, I slept for the day again. I am in at work today, but feel like I have aged by 10 years. My whole body feels heavy and stiff. My ferritin is always 6 - 7, I'm sure that it is a huge part of what makes us all feel this way. I hope you improve very soon. Mel x
Hi Mel, thank you for your reply. I’m sorry to hear you’re having similar issues. I’m due to get my blood counts checked in about 3 weeks but might go sooner. Take care, kindest regards Aime xx😺😺
How awful Mel, how do you manage to go to work when you feel dreadful. I don't know what my ferritin is,all is measured differently here,just know it's normal,still get the fatigue and the need to sleep,lucky I have not to leave home at all if I can't.Hope you feel better soon,so many of us very weary at the moment. Sally
Thanks Aime for your kind words...really appreciate it. You are so right too about how much to rest and how hard to stop work if you are involved in a certain thing.Ive been 'resting'in bed this afternoon ,did sleep a bit,but mostly I rabbit on to myself about this ,that and t'other!!!!You take care too
Me again ,pad slipped of my knee!!!Keep well as poss,thanks again for sensible advice too,Sally xxx
No problem Sally. We all understand what each other is going through. That’s what makes this forum so great. Take care, E HUGS Aime xx😺😺
SEPTEMBER IS BLOOD CANCER AWARENESS MONTH - Get the Chatter Going for MPNs
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