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?
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jillydabrat
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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
Your bluebell story made me curious. I wonder how you felt the next day ??? You see-- I took a real hard (physical) job, because I could not bear my depressions (side effect from Pegasys). I've always found that hard physical work is good for one's mind---but after some days feeling totally smashed all over, I started feeling extremely well-- not only in my mind-- but also in my body, and many of the side effects disappeared !!
I really can't explain what has happened , I have read we should exercise but never has the energy so never pushed myself to find out, however, as I wrote I had no choice otherwise I would have had the emergency services looking for me on the cliff paths, I shall stop babbling. The following day my aching sore bones and muscles are fine. The Haemo I saw today, said aching sore bones and muscles have nothing to do with PVr which I have ,so what the heck is going on I don't know but the exercise certainly helped I can move a bit better than before my hike. Regards June.
Hey again--and good morning I think you should try once more. And don't listen too much to Haemos-- they are, in fact, just as far out in the blue as we are AND-- never worry about babbling--babbling has caused many a good invention !!!!!!
There are 2 good shortcuts when your body "scream NO " to exercising. 1. good old solid massage (all over) 2. EMS (electrical muscle stimulation) -its VERY GOOD !!! Many physio therapists use it (even good for lame people) You can even hire/borrow an apparatus and use it at home !! (it is not too expensive to buy either.)
Don't be afraid !! It will kill your spirit-- faith is inexorable and better die fighting than crouching in a corner !!! NOT that you will die of this. The trouble is these side effects which the doctors try so hard to avoid talking/knowing about !!!
It is pure chemistry : When you kill a lot of blood-cells/-plates there will be loads of "garbage" for the poor body to handle. It exhausts liver, spleen and kidneys, beside of the normal stomach trouble you will get when there is too little blood for a proper digestion. Exactly as if you'd ride a horse through a Grand National and then feed it 12 pounds of oats 5 minutes after !!!! NOT good for the stomach
Electrical muscle stimulation - Wikipedia. Look it up. I think it is something for you -- Help you to feel better and get "recharged ".
Have you seen my closet, I have a big vibrating exercise plate just sitting there , haven't thought about it being used for this problem ..might start a jiggling session on it see if it wakes up parts forgotten, and a ' tens' units for my back , is that what you are referring to? you have to laugh though don't you, the idea's we get. Saw the Haemo doc yesterday and they told me after doing BMB and AP I haven't progressed to MF or Leukaemia so I am on a bit of a high today. yeh . Wishing you well .
Hahahahahahahah--shake it baby No--this one you can use while sleeping-- if you can agree to the tickling feeling !
It is little weak electric inpulses which are sent through your muscles to make them contract---like when you're moving. Sadly we can't post links in here, otherwise I could have shown you.
Think of --and electric fence--just for ants It does not make you sprattle--like Pinocchio. It is rather pleasant and work real powers.
OMG another haemo saying joint pain is nothing to do with PV. I think they should take the time to look up the symptoms which clearly state joint pain! Hydroxycarbomide also can result in joint pain. Like I always say, print out the symptoms of PV and have it in your bag for when you go to the GP or specialist then ask them to explain their thinking xx
HI Jilly, Just remembered another thing he said about pain was it was no just one sided if pain (as mine) is in one hip and thigh it won't be PV because it will be symmetrical ,so by that.... left arm and also right arm, left hip + right hip !!!! how does that work?
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.
Hey jillydabrat! Sorry to hear about your pains :'(. I have got trouble too with my foot joints. Then I started wondering, because I had been horrible tired for some weeks and had been eating rather much sweets and such-- to boost my energies.
Now I think that it can --in fact-- be caused by sugar, which creates lots of acid in one's body.
So It could be some sort of uric acid gout--at least a start.
You should maybe take a urine test--just in case. And find a basic diet you could follow. Eventually--drop the head meals-- and start eating healthy titbits all through the day.
If you prepare a plate every morning-- then you know exactly how much you eat. This will--even if you haven't got too much pain creating acid in your body -- make you feel less forced and you will have time to digest the titbits and at least avoid some of the body pain.
Avoid sugar, tomatoes, coffee (sorry--maybe you could have milk-coffee, if you're an addict like me), asparagus, fruit juice (you need the fruit fibres to keep your stomach working), alcohol . Check basic-diets on the net. You don't need to suffer, there are lots of nice basic food.
BUT-- you have to have the urine test first, cause otherwise too much basic food won't bee too good. (sorry for my bad English, I'm from Scandinavia)
Greetings yarrowleaf.
PS-- Maybe this advice sound airy-- but I have an ET jak 2 and have been on Pegasys ( 45 ml / every 3rd week) for 3 years and I jump ANY idea to get rid of my side effects
I get terrible joint pain, esp in my hips. I didn't think it was necessarily linked to ET, as my haematologist isn't the easiest person to talk to. That'd answer some questions!
Hi Lynnie, I am on lots of pain medication but still I have pain in my hips to the point it is impossible to lie on my side without a dose of paracetamol first. My consultant sent me for a bone density scan because of my back pain and, as well as the scoliosis at the top of the spine, I am also borderline osteoarthritis and have to be monitored for five years. I do get depressed and scared that I am like this at 56, what on earth will it be like if God gives me the grace of reaching 66. Pain sucks and drains everything from your life.
I keep my hands busy by constantly knitting and crocheting but, again, doing too much exacerbates the back pain.
I get more than cheesed off that doctors insist that Hydroxy or even the disease itself doesn't cause joint pain.
All I can say is try and keep positive and just do as much as you are able.
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I think you should try once more. And don't listen too much to Haemos-- they are, in fact, just as far out in the blue as we are 
AND-- never worry about babbling--babbling has caused many a good invention !!!!!!
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