Aching Joints? How many people, with an MPD suffer from aching joints? Following on from an earlier question posed today.

[amarylis]

I was diagnosed with ET 16 years ago, and have been taking HU for about half that time. A few years ago I started to suffer hip pain. My GP had me tested for arthritis, amongst other things but nothing could be found. It subsided but has never vanished completely and I ache in other joints from time to time. Could this be a side effect of the HU or maybe part of the condition? Any views.

[Aime]

Hi Amarylis, I was diagnosed with PV last year. I have always had joint pains but they have been getting worse over the last year, particularly my hips. I have been getting treated for bursitis but the pain and discomfort is getting worse. I also have osteoarthritis confirmed in my lower back, thumbs and neck but most joints crack a lot, are sore and feel pressurized. I am not on HU or any other meds for my PV yet although my platelet count is being monitored at the moment as it is on the rise. Hope this helps.

[amarylis]

Hi Aime - thanks for your very speedy reply As you are not on HU, it cannot be related to that however, it would be interesting for you to discover whether this was a particular problem for PV sufferers. Sorry, to hear about your discomfort I really hope they are able to find a way to relieve this or even better reverse the problem. Take care and God bless. x

[Swede]

Hello, I started to have a very painful Hip about two years before I was diagnosed. I can't really say it has become worse since I started to take Hydroxycarbamide but it hasn't gone away either.

Read somewhere else here, that quite a few had or still have an aching hip or joint....

MLA

[amarylis]

Hi - Again, thanks for speedy reply. Am sure you are right, as I think I remember reading something similar a while back. . But a question yesterday, regarding obtaining disability benefit, due to aching joints, prompted me to ask the question directly - to see just how many of us had this in common. So often I have been to the GP about a problem, which has thrown up negative results. However,more and more I am beginning to suspect that a lot of these mystery ailments could be related to the MPD - which, if nothing else, we can at least enlighten our GP's with this information. All the best with your hip problem, hope its not troubling you too much at the moment.

A

[JediReject]

Hi amarylis - I have ze aching joints mainly knees, ankles and toes and recently my right hip, but I have put it down to my gout as an increased Uric acid level is a symptom of MF although I do take Allopurinol to counter it. I have been on HU for over 6 yrs and who knows the full impact of longer term use. I also have unexplained leg pains and some days they feel like lead weights - my mum had Myeloma and used to complain of sore legs, I mentioned it to Hem but he said there was no medical reason I should feel like this. So Im no wiser. It would seem many of us are in the same camp and we cant all be eating magic mushrooms or smoking herbals eh.

Cheerz

[sjdard]

Hi, I was diagnosed last July was put straight on to HU and aspirin. I had lower back pain for a long time before, but since December i have had a problem with my hip. Its got progressively worse and now I am in constant pain from the hip all the way down to the ankle. Doctor said its nerve related and will get better. To date I am walking on crutches cos the pain is unbearable at time, can't sleep and feel really down. I do try to walk but weight bearing it just to painful. My GP says you just got to live with it and it will get better, he has not done any xray or scan, so he really doesn't no what is wrong. I just wish I new what was wrong so I could see any light at the end of the tunnel. I don't no if this is related to my condition (ET) or not but it only started soon after diagnosed. Hope you are feeling better.

[amarylis]

Hi Sjdard - sorry to hear you are in so much discomfort. Mine did get to the point where I was walking with a slight limp - which was why I felt it needed to be investigated but as I said nothing was found and thankfully the pain did subside. Now I just get twinges, mainly in the hip, but also in my shoulder, occasionally in my feet, and also around the jaw. I don't think it would have occurred to my GP to link it with my ET and neither did I but will ask my Haematologist at my next regular check, to see if she thinks there might be a link. Perhaps you should do the same. Hope the pain does settle. All the best - A

[Sunnyday]

I have ET and go to a great Hematologist however it has become apparent that many of the symptoms we have are not acknowledged by the Doctors we go to. I wish they could all be encouraged to visit this site and maybe we would all feel better just knowing that they realized that there are many mysteries to these various MPD"s. Just my thoughts," Sunshine"

[Mwalimu]

Amarylis, I too get a pain in my jaw now and again. Also, twinges from time to time - quite acute - at the top of my head but the same side as the jaw problem. My haem said they are both unrelated to ET and/or HU. (X-rays at dentist revealed no dental problem.) It would be nice if one's doctor/haem recognised we had side effects but they really seem resistant to the idea and my hints about this web-site don't appear to have been taken up.

[rubyrubyruby in reply to Mwalimu]

I agree with your comment about many doctors/haem not recognising the side effects associated with our MPD's! At the end of the day I think it indicates that they really couldn't care a less about their patient and can't be bothered to research any further into the condition or suggest anything to reduce the suffering.

This forum proves that fatigue, aching joints etc ARE related to our condition otherwise you would not have so many people suffering with them. It makes me so cross and just adds to the frustration of what we are all going through!

[jamieisabella]

Hi, I have just joined having been diagnosed just over a year ago with an MPD ET. Having looked at the Q & A's this is the first time I have felt as if I'm not alone in my frustration with GPs and Haems not relating aching joints with the condition. I was disgnosed with ET following blood tests conducted for my aching joints where it was discovered that I had the Jak2 gene. Still the GP can't come up with an answer for the joint problem! Thanks for your comments they have really helped.

[JediReject]

Welcome jamieisabella. You're def not alone -hey that could be a song 'you are not alone, , , , I am here with you la la la' . Anyway like I say you're not alone in your frustrations about the various effects of our MPN;s. Take care

[DeniseC]

Hi all, I agree with the comments on our docs/Heams only being interested in treating the disease and not us as patients. I was diagnosed about a year ago and was put straight on Hu and Aspirin, I was told I would get no symptoms from Hu, but like you I get very tired and have joint pain especially in my lower back and hips. My heam says not related to Hu or ET!!!!! It is frustrating that we are not actually listened to. This site is such a help, to know that what I am experiencing are real and probably are connected. Good luck everyone.

[denni17]

Hi guys, to be honest I am so over aching from head to toe especially my calves and feet well actually all over I have had ET for 20 years and have been on Hydrea the whole time. The bigget thing sometimes I can't cope with is doctors thinking it has nothing o do with ET well I would love them to know how much I hurt sometimes for weeks on end. I still work full time and it's a physical job but sometimes I can't stand their ignorance. I mean they have just recognized now that tiredness is the main symptom after years of us complaining. Anyway that's my rant at the moment I know one day the will have this big breakthrough and they will then say oh yes btw one of the main symptoms is aching all over. Until then we just soldier on lol. Anyway thanks for listening guys

[Titatagg]

I posted a while back about the connection of achy joints and MPds and I am so glad to have read all your posts. I have been tested for every possible source of the incessant joint pain and as I am only in my mid 40's with no medical explanation for my pain ( so severe I can't sleep) it must be due to my PV. I am very lucky to have an amazing haematologist but she also says there is no explanation for my joint pain. I am going to tell her about all these posts next week when I see her . I am on Peg interferon now , HU for a time but no change in joint pain with different meds. How do you all deal with the pain. I am not allowed to take any thing but paracetamol and I should limit this due to poor liver function. Has any one tried acupuncture, diet, etc?

[sparko35]

Hi I was diagnosed with PV late last year and had been suffering with joint and muscle pain i was referred to a rheumatologist a couple of months ago had a full examination and was asked lots of question he told me he believed it was gout that was causing the problem and that it had spread to the other joints and this he said was due to the PV i had a blood test to see how high the uric acid levels were these came back as high/normal and have now been prescribed more drugs to treat the gout.Not sure if this is what you have but maybe see your doctor to get referral to a rheumatologist. stay well

Phil

[LouisePRV Volunteer]

I've made a note and am going to see if I can print all the comments for my haematologist at Christies in Manchester. There's a forum in June and it would be useful to discuss.

In my experience GP's are fairly useless when it comes to the rare things - they are neither knowledgeable nor prepared to look it up. My GP confessed she knew nothing about MPN's. Quite an insult I thought, as I'm the only one on their records with an MPN - you'd have thought someone in the practice might show some interest.

Strikes me if it isn't measles, a sore throat, or arthritis they're a bit clueless!

[amarylis]

Hi Louise - I think it would be an excellent idea to discuss this recurring problem. It does seem that aching joints, muscles and bones are extremely common amongst the MPN community, and it is more than frustrating that there does not appear to be data or knowledge available to GPs and other Health workers to give credence to our problems. Therefore, we always seem to be the ones attempting to direct or inform GPs, Dentists, even Haematologists (!) on the latest findings. Which I feel tends to be received with "kindly condescension". As you say, due to our disorders being so rare, the inclination to become more informed - amongst the medical profession, seems fairly lacklustre. Will be very interested to hear of any responses to your discussion, sadly wont be able to get to Manchester. Am hopeful that there will be a forum closer to home (Midlands) in the not too distant future.

Good luck!

[Loubielou]

Hi, I'm Jak2+ ET, aspirin only, diagnosed 4 and half years ago. I was suffering with a range of weird and wacky symptoms - which prompted me to go to the GP at that time. One of the most troublesome was my aching joints - especially my right hip and knees. This came on a year or so prior to diagnosis. With no other explanation I believe it is related to the ET. Lou xx

[ABman]

I'm close to 9 years with PRV, and age 75. At my last birthday I made a list of 30 symptoms of my disease and gave it to my doc. I don't really expect him, or anyone else to understand this list of symptoms, and have decided not to bother my wife about them either as it distresses her, and I know she doesn't want to hear it all. Bleeding gums, aching hip, knees and feet are all on the list, and recently I have a permanently swollen left hand and foot. My doc says to exercise, but we live in the country with lots of snow to shovel, etc. and much yard work in the summer, and I do go for walks. The yard work makes my swelling increase. I just do what I can and say as little as possible about it all as it doesn't do any good to complain, does it? I've had a pulmonary embolism and a heart attack, which I attribute to the PRV, as well. Bathing is very painful, but I have found a product called "Sproam" that doesn't cause so much itch, and I use it to hand wash myself. Hope this helps someone else a bit.

Abman

[Twinkly]

Hi there Abman. I think your doing o.k. For a man of 75. Sounds to me you are just jogging along ,not too happy ,so I thought I'd send you an answer to let you know we are grateful for your in put. At your age you have lots of wisdom to share ,you have probably had all our symptoms and learned to cope and live through them ,good on you ,lets hear from you more often ,it's good to chat and share ,,,twinkly.x

[Jackybuckley]

Hi Amarylis

I have always suffered with pain in my ankles knees and hips I asked my doc again last week and again he said arthritis but I'm not so sure although only diagnosed 3months ago the pain in my lower body and shoulders is excruciating I think maybe I need to get arthritis either ruled in or out