MPN Voice
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Severe leg joint pain

I have PV and am on Pegasys 90 mcg weekly. I have terrible hip and knee joint pain. I also get severe muscle cramps in my feet, calves, and thighs. My oncologist's only response is that I should stretch, which I do regularly. My magnesium levels were normal so he's not concerned. Do any of you have this pain? If so, what do you do?

Thanks so much.

Mary

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Hi Mary, yes I have PV and went through a spate of calf muscle and foot cramps. I did get quinine tablets from the doctor which I do think helped. Apart from that I was told to stretch too.

Kind regards Aime.xx😺😺

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Thanks Aime!

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Hi Mary

I’ve been finding that hot water bottles help relax the spasming muscles. Getting someone else to stretch out my legs without my trying to do anything ( passive stretching) when they spasm helps me too.

Would a physio be able to gove some expert advice? Cramp/ muscle spasm must happen in other conditions.

I have MF and bleed easily, and bleeding into the joints can cause pain But, said my haematologist, if joint pain isn’t excruciating it isn’t caused by bleeding into the joints. So far mine hasn’t been.

All the best for the New Year

R

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Thanks Rachel. I don’t have MF that I know of. I do do passive stretching often but this just doesn’t seem to go away. Thanks.

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Hi Mary, I have ET and had been having nondescript aches and pains throughout my body, making me miserable and feeling like I was 90 not 60. I have been suffering for about 2 years but have only just been diagnosed in October. I did lots of reading and wondered about CBD oil. I asked my consultant at my last meeting and he said because there is no regulation on how this is produced he, personally, would not take it. I thought, easy for you to say, not having constant aches and pains. I did some reading and decided to give it a go. I got my first little bottle before Christmas and have had an ache free Christmas. Both my sons have problems, one is waiting on an MRI on his back and has been taking all kinds of painkillers prescribed by his doctor from valium to strong painkillers none of which have helped for any extended period. My other son suffers head to toe eczema and upon waking, has to scratch for about 20 mins. I told them, almost tongue in cheek to try my little spray, one spray under the tongue and over Christmas, both had a pain/itch free 3 days. They are buying their own now.

Just maybe something to consider.

Grace.

3 likes
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Thanks but I've tried canabis oil without relief. What strength do you use?

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I use 500mg. but only once a day, it can be used 3 times a day I believe.

I guess some of us are just more receptive than others to some things. Sorry it didn't seem to help you.

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I may have to revisit this. Thanks!

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Hi Grace, I've been wanting to try CBD oil for my arthritis pain, can you tell me where you got yours from please?

Thanks, Lizzie

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I've put a post up on my own page Lizzie, don't want to clog up Mary's post.

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Thank you, I think I'll give it a go!

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Hi Mary hope you had a good Christmas I am on 45 mg of Pegasys and the side effects I get are pains in my legs worse in the night and some pain in arms and shoulders but not has bad has in legs . I told my doctor and he said this can happen and to take pain killers .I do stretches and walking the Pegasys is working for me so I am going to carry on with it I hope you feel better soon best wishes Poppy

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Thanks Poppy. What pain killer do you take? Nothing brings relief! I wake several times a night and I am in pain all day. Thanks.

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I suffer spasms in my toes at night. I try to keep the balence by eating bananas and if I could tolerate tomatoes these foods are a rich source of potassium.

I find tonic water with a slice of lemon helps.

Haha, but seriously flight socks could help both keep your circulation going and keep your feet toasty.

Gentle exercise like swimming could help.

I also go to a spa to have a luxury pedicure and she massages my legs and calls.

Hope this helps.

Regards Annemarie(Roger41)

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Thanks. I find the tonic water thing interesting....must try.

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Hello, Mary. I had an appointment with my oncologist a few days ago, and she offered interesting advice regarding bone/joint pain. My hips have been especially sore lately. My doctor, who is well-known nationally as an expert on MPNs, said that for unknown reasons, Claritin is recommended to reduce bone pain. Claritin is an antihistamine, most commonly used for allergies. It has also recently been used to reduce inflammation and bone pain related to MPNs. With the craziness of the holiday, I have not yet tried it, but do plan to very soon. My doctor is exceptional, and if she says it's a good idea, I trust her completely. Best of luck to you.

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Thanks so much!! I will try it.

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I have the same, I have been told to stretch too, I went physio, gave me stretching exercises, no difference really, though stretching is good. Cbd little relief. Now, I am wondering if the meridian system is blocking up, so I am going to try acupressure.

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My doctor was totally against continuing acumpucture.

The small veins could get infected and he recommends it for nobody who has ever had blood clots

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Thanks. Good to know.

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