Pain in legs and arms: Hi everyone Can... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Pain in legs and arms


Hi everyone

Can I just ask if any of you suffer from pain in legs and arms I can only discribe it as a dull pain but it can keep me awake at night. I also get a lot of pain in my calf as if I was having a clot but the leg is not hot or swollen,

17 Replies

Hi there, a lot of us get pains here and there and of course we all have to keep an eye on ourselves for the obvious reasons, always check out pains in your lower legs like that, and also make sure your Iron, B12 and vitamin D is checked regularly, and a regular Thyroid panel. MaryF

spider7 in reply to MaryF

Thank you Mary I am on iron tablet and thyroid medication, I did talk to my gp but he said if it was another clot that I was already on warfeen so should not be a problem

I had long suffered from what I think is known as restless leg syndrome, found it very difficult to keep them comfortable for more than a few minutes.

I happen recently to have started treatment for aneamia and have noticed that I don't seem to have the leg problem, I also notice that when I wake my hands are no longer numb or full of pins and needles.

My ferratin levels were pretty low, around 13 but are improving slowly and moving toward the minimum target of 30 that my GP wants me to exceed.

I cannot recall the study in question but did find a paper that suggested low ferratin was found amongst APS patients at above the general population rates.

spider7 in reply to tim47

Thank you tim 47 just want to ask what is Ferrari levels I have not heard of this

MaryFAdministrator in reply to spider7

Ferritin is part of checking your iron level, and also low vitamin D can cause extra pain! MaryF

3Snyders in reply to tim47

So glad I read this. I have been having tingling in my arms and legs for about a year now. I had told my hematologist about it from the beginning but do not feel that it was addressed until 3 months ago. Dr called and said my iron was slightly low and I started on iron pills. It has not helped and I am still having these symptoms daily. I am also dealing with others issues with my pop and am just tired of not feeling right.

Kbjp in reply to 3Snyders

For me, the numbness and tingling has gone away since I have been on blood thinners. My INR levels are still between two and three and I'm going to talk to my doctor about raising them. Right now they have me taking half a pill once a week instead of a whole (warfarin) that I take the rest of the week, and I noticed that that night I have tingling again but the rest of the week I don't.

MaryFAdministrator in reply to 3Snyders

Did the doctor also look at your B12, this is frequently missed and is important. MaryF

PCP not pop

Thank you everyone for your comments will ask doctor to check my b 12 I am on iron tablet 1 every day

yes I suffer pains all over especially at night,wake up sometimes with extreme pins and needles and bits of me are numb. Please pay attention to pain in the calfs especially if there is swelling and hot to touch as this could be a clot. x

spider7 in reply to jessie68

I did go to the doctor he said that I was on warfeen and if there was a clot it would be ok

jessie68 in reply to spider7

With APS warfarin doesn't always fully protect you from clots because INR levels go up and down,sometimes warfarin levels need to be adjusted. If you find your leg is feeling tight and swollen or hot please go to A&E if your G.p doesn't listen x

Thank you will go to hospital if pain gets worse when I had clots before I did not have a swollen leg or any hot spots the clots went to my lungs this has happened 2 times may not be so lucky a 3rd time.

Yes omg it keeps me awake at night too! It comes wen I lay down and goes on till about 4:30am! No sleep it's horrible! It's from APS but I havnt told my Hemotologist yet! Don't no how to stop it! Any suggestions out there! Thx

I get a lot of pain in my legs. It’s like deep in the big leg muscles. I don’t know what to do with them and move them every few minutes. It’s worse the more active I’ve been. I put them up (recliner chair) often the pain is so bad, I cry. The other night I cried in bed for 2- hours.

I have regular bloods and all is well (even the private blood panel) the leg pain is often worse when my INR is under 4.

I need balance in my life x

HollyHeskiAdministrator in reply to WendyWoo50

Hi Wendy, Im so sorry you are going through this.

Can I suggest you post as a new question as this is a very old post?

Others can help you with up to date experiences.

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