Hi Guys,
I just wanted to ask, how many of you, who have PV or another MPN suffer from arthritic like bone pain - best way I can describe it, is toothache but not in your mouth!
I’m being plagued by what I thought was osteoarthritis and I just wondered if anyone else had already had this connection made or dismissed by their haem.
Thank you and kind regards Aime xx😺😺
HI Aime
I have et jak2+ i get alot off back pain do not know if et or brain op went wrong in2007 the best way to describe it is like having a squirrel gnawing away at the bottom off your back made worse after fall last week and the back got worst of it i hope you have got your other problem sorted prompted me into e-mailing two MSPS as this should not be happening
Best wishes
ScottishTerrier xxx
Hi Scottishterrier, oh no you poor soul! It’s always the already sore bit you hit! I’ve got a private consult on 8 October in Edinburgh. Got my b&b booked and my seat on the bus, which will be free apart from a £1 booking fee. It’s still hassle but I’ve no faith left in the first haem now so need to do this.
I’m hobbling on my foot at the moment. Had 3 podiatrist’s opinions plus 2 gps and 1 consultant, getting varying diagnosis so think ill be returning to the consultant again for yet another private appointment as he at least helped to relieve the pain by injecting the base of my big toe. The waiting time locally for an Orthopaedic appointment is about 24 weeks!
You take care, hope your back improves soon and thank you for raising the issues with the MSPs. I can identify with the gnawing squirrel!!
Kindest regards Aime xx😺😺
Hi Aime
If the pain is not in the joints, but in the bone itself, then that sounds like the long bone pain that MPNs can cause. I get it ftom time to time.
If the pain is in the joints themselves, then bleeding into the joints can happen if you have clotting problems, but, said my former haem cheerfully, that sort of pain is usually excruciating. Which mine hadn’t been.
All the best
Rachel
Thank you Rachel for taking the time to reply. That’s interesting about the bleeding into the joints. Hopefully that won’t happen but you are never sure. My pain is extremely sore some days but not excruciating. Hope you are well, kindest regards Aime xx😺🥀
Sorry to hear about your pains Aime,you are the one who usually has the advice for the rest of us.
Yes I get odd pains ,mostly hips,legs and old broken parts! Never sure if it is age related or PV. Shoulders too and neck,headaches as well,none of them are continual,just arrive some days and nights when trying to get some sleep.Only recently my legs tend to turn to water and I have to grab something to keep from falling...Dr thinks I do too much and must rest before getting tired!!!
Might as well stay in bed all day!!
I really hope your private appt can help you.
My daughter had a nasty car accident,damaging her feet ,ankles and legs,after discharge from hospital ,she waited months for physio,now the tendons are severely stiffened and she has had to go privately for treatment.....not good is it.
Really hope you get some good treatment. e hugs and hopes for you
Aime X Sally
Hi Sally, so sorry to hear about your daughters accident plus all the symptoms you are coping with too. Hope you get some energy soon and feel the best you can be ASAP. I found out yesterday my BP is on the high side. I’m already on ramipril for that but now got another tablet to take - I’m sure you’ll hear me rattling!😹😹
Sending you and your daughter a ton of E hugs and 💐 💐. Has your daughter got access to a hydrotherapy pool nearby? It has been a godsend for me, apart from increasing my itch - the only downside. But the temperature of the water plus it’s ability to support limbs and allow pain free exercise is well worth the itch!
Kindest regards Aimexx😻😻💐💐
Yes I get the bone pain you describe, it has slowly got worse over 20 years of et, gp will just prescribe painkillers either cocodamol or tramadol, I tried both but was sick on most of them so I use herbal remedies now, you do get used to it after a while and sometimes don't even notice it sometimes, take it easy nick
Hi, I was told it's a symptom of MPNs and to take paracetamol. Good luck, F.
Hi Aime, I get a lot of bone pain which has increased in severity over the past 12 months. Paracetamol used to help but it rarely does now. I find a hot water bottle soothes.
I've also recently been diagnosed with Hyperparathyroidism and bone pain/muscle weakness are some of the many symptoms associated with it. Thankfully there is no treatment for Hyperparathyroidism, there's only cure! So I'm waiting for an operation to get it/them removed. Fingers crossed that once removed I will go back to the more manageable singular PV bone pain instead of the double whammy I've been suffering. Best wishes, Kari
Hi Kari, oh me you don’t do things by halves! Wishing you a speedy recovery and a symptom free life post op as you have enough to do, coping with one condition. Take care and thank you, sending E hugs and loads of flowers 💐 . Will be thinking about you - let me know how your op goes. Kindest regards Aime xx😻😻💐💐
Hi Aime. I was having a lot of pain - mainly in my hips. I got sent for an X-ray and was diagnosed with osteoarthritis in both. Best way to deal with it is doing the relevant exercises and pain killers. Can’t blame my PV for everything - much as I’d like to!!
Thank you Sallush. Hope you get some relief from your pain. Have you access to a hydrotherapy pool? I go twice a week and although it intensifies my itch, I get great relief from the warmth and support of the water so I can exercise virtually pain free.
Kindest regards Aime xx😺😻
I do and I believe, for me it is a side effect of the medication. Pegasys but it was worse when I was taking hydroxy. It is on the label as well as discussed online. ATB Penelope x
Aime I know what you mean, my sister, mother, uncle, brother and myself have it, it's genetic coming down one side of the family. Female side gets it in their hands and male in the legs. My affliction only started last year, in my knees, coming up and down stairs especially, my uncle and brother have had operations on their knees, seeing my brother last year hobbling around obviously in a lot of pain? [he lives in Wales, I will see him for the first time since he was operated on last year, next week?] that hot spell was lovely, no problem, but the wet aggravates them especially around the fluid around the knee caps [coming down the stairs, ouch, ouch, ouch!]. My sister has started it on her fingers, and she likes gardening, [ouch]. I found some cream applied on the joints are a great relief. It seems like the older generations are afflicted, I'm 62. Hang Loose!
Hi Adlon57, thank you for your reply. What a shame that your whole family is affected plus getting older I know doesn’t help. I find solace in two visits to a hydrotherapy pool per week; one to attend a Pilates class, run by a physio and the other time when I do exercises on my own. The warmth and support of the water is great and really helps the pain, although it annoys my itch but I can’t have my cake and eat it!
Kindest regards Aime 😺😻- sending hugs to you all and 💐 flowers.xx
Hiya Aime
Yes I get awful growing type pains ( you know like when you was a kid ) I get them in both legs from the hip all the way down through my ankles ,feet & toes
it usually starts early evening 6/7 pm and lasts until the early hrs 3/4 am
I take painkillers it's the only way to finally get some sleep , but thankfully I only endure this once every couple of months the rest of the time the other pains in various body parts are bearable ! so only take pain killers when absolutely necessary coz they really upset my tummy ,
as you know I'm still waiting for my 1st haemo appt so maybe they can say if it's attributed to PV I will ask ..but I don't think they will know coz they are blood specialists & not MPN Experts ...x
Hi nightssky, thank you for your reply and sorry to hear you have bone pain too. Painkillers upset my stomach too so every sympathy. I had to get an emergency appointment last week due to pain in my spleen area but my gp thinks it’s probably gastritis due to the painkillers but I’m going for an ultrasound to make sure. I’m also going for a second opinion with an MPN specialist which you will be entitled to ask for too.
Thank you again, thinking of you - hopefully your wait will be over soon. Remember and write down all your questions, so you get the answers you need. Remember too, you have friends on this forum who will support you.
Kindest regards Aime xx😸😸
Hi Aime thanks for your helpful advise in particular the bit about asking for gp to referal to a Mpn specialist how did you go about that ?
can u get that as a nhs patient ?
& how long did you have to wait for an appt.
how far did you need to travel for this I'm in east mids Derby !
Xx
I’m in Scotland, which is a different system. From what I understand, in England, you can request a second opinion from the NHS through your GP. I believe, at the time, you can suggest who you want to do your second opinion.
Diagnosed PV 3 years ago. Venesections first. Now on hydroxycarbamide. Dreadful left hip pain at night. Had X-ray. Just “wear & tear” So after reading many others with bone pains I think it’s that. Paracetamol doesn’t last all night. Complicated by me also having Parkinson’s. Going to try Apple Cider Vinegar.
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