The joint pain is getting beyond bearable

Hi my dear MPN family,

I am having severe problems with joint pain again, especially in my feet. I had a gastric bypass on 2014 and got down to a size 14. I was so happy to be free of the weight. Then i got diagnosed in 2015 with PV and put on Hydroxycarbomide. When my consultant saw i had had the bypass she told me i would hate her as i would put on weight and boy have i. My husband worries to death because i hate the thought of eating. If i could go the rest of my days without food i would be over the moon. Most foods make me sick or give me terrible stomach pains so i have become almost phobic about food. My husband had the same bypass and eats 3 times what i can yet he is now skin and bone. I have stopped telling people i have had the bypass because they look at me and i can see that they are thinking i just eat loads and i get so annoyed. I do have scholiosis at the top of my spine but the pain down my back and in my feet is terrible. I try to walk everywhere but even just going to the supermarket just one block down the street is now getting to much. When i try to stand up afterwards the pain is intolerable for the first few steps. I have declined so much since Christmas that i am scared to death. I see my haemotologist today for blood checks and i don't know where to start when she asks how i am. Sorry for the long post guys. Does anybody else have the bone/joint pain as bad?

5 Replies

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  • Hello Jillydabrat,

    Well we could really be twins as I have exactly the same history and daily problems as you have told us about, 2007 a Gastric bypass, got down from 17 stone to 10 now up to 12. 1/2 , but to be honest Jilly the surgeon told me that this would happen that way, so maybe you aren't being affected by the meds just the usual progression of bypass, so just take in small amounts of food My dinner is on a side plate, but if a dinner plateful is offered I eat some and save for my supper then ditch the leftovers.. I still do get a bit nauseated by food even after all this time too. I look in the mirror and think OMG am I heading up again , Just had a BMB to see if I am on a different path now which is more scary that the weight I see the Haemo doc tomorrow for the results, keep your fingers crossed for me.. I too find I have a lot of bone pain especially when I have been sitting down, I have to stop and straighten up before I set off because my hip and thighs are very painful plus the neck and back. Now don't laugh , we have a beautiful Bluebell Wood in Guernsey and yesterday I was determined to photograph it telling myself it might be the last time I can manage the slope , well I got well and truly lost and confused as to which path to take to the place my husband was waiting for me, I had to walk miles along the cliffs to get back to town, and then I thought if this doesn't wake up my blood counts nothing will, arrived home safe and sound. I was SO TIRED. Chin up Jilly we are all rooting for one another. Cor I don't half go on eh? Best wishes .June

  • Omg June, you are right, we could be twins! So happy to hear from someone so alike, bless you. My limit for food intake is half a sandwich, anymore and i would be sick and that is a small danish loaf. I just have no interest in food at all. When you got back from your marathon walk did it hurt to stand on your feet afterwards? Like you i have to stand up and let the pain ease before setting off but every step is painful. I have a bucket list where i want to see as much of the lovely countryside from Scotland to the south coast but the way my pain is i dont know how much i will enjoy it. Thanks so much for posting xxx

  • Yes spot on Jilly , today was 1 slice of bread cut in half to make myself a ham sandwich, a cup of tea and I'm ok. If I have a little French fancie or a jam tart , race (ha ha ) up the stairs to the bathroom by way of pulling my self up by the bannisters and boom... well you know the rest. you have to laugh at all this otherwise you will drive yourself nuts. Yes my feet hurt but do you know today after my trek in the woods and cliffs and god knows where else I feel ok , why? sitting down ok why? this horrible thing we all share is so complex isn't it, No one in my family have ever suffered from any sort of major disease now Me with PV + my sister this year with Breast C and her son with possible PV. NO rhyme or reason. But do keep smiling Jilly and keep in touch if you wish , I am always being nosy on this site. Regards sister. Junex

  • I have ET JAK2+ and have taken hydroxyurea for about 2.5 years but a few months ago I had put on 19 lbs over a couple of months with no diet changes. I'm having the same pain as you guys to the extent I can hardly walk and my muscles feel like I've run a marathon all over.

  • I put on a lot of weight with hydroxy, and I was already overweight. I have been going to slimming world for over 2 years, I've lost 3 stone, but since being on Anagrelide I am finding it extremely difficult to lose anymore. I also have severe arthritis in my knees which is VERY painful, I have a lot of difficulty walking and standing. I am hoping if my platelets are level for a while that they will do knee replacements, but my levels have been very up and down, apart from the last 2 and they were practically normal - so hoping that will carry on. Not moving much as it is so painful doesn't help with weight loss - although I do go swimming 4 times a week to help keep my knees going.

    Best wishes

    Lizzie x

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