Hi all. I have not posted in a very long time. I do however, read all your posts and keep you all in my prayers. I am fighting severe exhaustion and depression. I force myself to get out of bed. I am Jak2+ PV diagnosed about two years ago. I have been looking for a new hematologist as I cannot tolerate the current one. New blood work shows low Iron count and severe anemia. This is evidently causing the fatigue and depression. If I take Iron pills this will lead to production of more red blood cells then to more phlébotomies. Sounds like a no win situation. I am only on Aspirin. If anyone has experienced this please share with me. I also have recently developed night sweats. I am long past menopause. Does anyone else experience this. Thanks to you all. As I said I read your posts and pray for you all. Just reading about you all gives me strength in knowing we are not alone
Hugs, Harlie
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Kinsalelady
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Sorry to hear that you have been suffering so much.
I have PV Jak 2 negative and have found the fatigue to be by far the biggest issue for me.
I've been doing everything I can to try and manage it better but some days are proving impossible.
A couple of weeks ago I contacted a Macmillian Wellbeing Centre based at Southmead Hospital in Bristol (where I live) and they were outstanding.
I explained that the main issue was the fatigue and they have referred me to a fatigue specialist,a diatitian and have also offered me alternative therapy like reflexology but also do head massage and shiatsu to name just a few.
I had to cancel my next reflexology appointment as it clashes with my next Venusection but when I called to cancel I explained to the lady that I wasn't sure if this was going to help me but she explained that a lot of people find that it can help with the mental challanges that comes with being diagnsoed with something like we have.
I'm sure you live no where near Bristol but it might be worth seeing if there is something like this in your area.
I promise they really have been the best people I have spoken to so far and even referred me to see the senior Hamotoligist at Southmead as they felt I should not have been left like I was.
I hope you do start to feel better soon and have left a link below to the Macmillan Wellbeng centre.
Oh, James thank you so much for your reply. I live in Florida in the winter and wish I were there in the UK as you seem to have better health care for PV. Ihave considered consulting with a dietician so perhaps I better do it. I used to be a fun and active person now I am depressed and have to force myself out of bed. The fatigue is horrific. First on my list is a new hematologist. One I can actually communicate with.
Thank you again. Sending prayers and good wishes to you. Thank you so much for your reply.
To be honest I went to see my doctor about being referred to a Dietitian but my doctor said there is nothing I can eat or drink that will effect what the bone marrow does but when I was trying to find more about the condition I noticed websites (American ones) and people on there really think what you eat can make a big difference on some of the symptoms we can suffer.
I've been keeping a diary for weeks now to see if I can find a pattern as to why one day I can feel almost perfect...but others I struggle to get out of bed and when I do I just end up going back to sleep again.
I try to eat as well as I can and drink plenty of water but like you have been suffering a lot since this was spotted.
I'm sure the good days are only just around the corner again and they better be for me....I woke up this morning very tired and not really paying attention and walked through a pile of cat sick.If i didn't have PV I would have been wide awake and seen that haha
I've tried to find something similar in my area & my local hospice does an outpatients dept offering similar things, advice on fatigue & diet & complimentary treatments so I'm really looking forward to starting, just feels better doing something to hopefully help
I'm sorry to here you are not feeling well. I too was diagnosed with PV and Jak 2 positive just three years ago and have managed to stay off the main drugs. When I was first diagnosed I questioned my haem at length and he told me that 'if you get your iron from red meat we take more blood and if you get your iron from cabbage we take less' . So I replied 'so there is a relationship to diet'. He replied 'nobody sticks to diets'. I decided then and there to change my haemotolgist and do as much research as possible. My sister is a medical herbalist and on her advice, made radical changes to diet and lifestyle and added suppliments. My haematocrit has stayed fairly low and I have not had to have many venesections. My new haemotologist thinks what I am doing is having an effect. I have not had fatigue, but do get some night sweats but I know hat is the menopause which is giving me some troubles!
I can let you know, if you are interested, the changes I made but I'm russhing out to work at this moment and it would take too long right now...all the best, Vanessa
I am newly diagnosed with PV and ET JAK2 positive of about 3 months now and get real encouragement and useful information from everyone on here. It really does make me feel like I am not on my own. I would love to hear the diet and herbal changes you have made. The night sweats are a problem for me also. Sending hugs to you both and I hope you manage to get sorted Harlie
You have both asked me about what I do herbally or diet wise. So here goes, sorry if a bit long. I have seemed to have been able to keep things at bay for a while but there is no 'proof' as there isn't a control experiment of me!
I've been taking Curcumin (core part of Tumeric...you can take just Tumeric) everyday. There are serious medical studies that back this up and my haematologist said 'oh yes, we know about Curcumin'.
It's worth investigating and if I didn't have access to a qualified and experienced medical herbalist I might not be quite so confident taking it, dosages etc. It is low inflammatory and readily available.
I have, as much as possible cut out all processed food. My diet consists of a wide variety of mainly organic vegetables. I eat plenty of oily fish and salmon, only good quality meat but this is only very occasional. I try and keep sugar low but do have 85% dark chocolate which I have weaned myself onto as it is so good for you and stops me eating lots of other sweet things. I'm generally off gluten which can also cause inflammation and I'm even off dairy generally but this is due to other health issues. I keep hydrated. I allow myself a glass or two of good red wine at the weekend with food. I do treat myself and embrace new cooking as a pleasure rather than 'oh no, I can't have that.'
I take: vitamin D3 for bone marrow, cod liver oil, Curcumin, hawthorn and olive leaf (vein and blood vessel health), slippery elm (for gut health), probiotics (saccharomyces boulardii)-also for gut health which there has been breakthroughs recently with the medical establishment with regard to gut health but herbalists have known about this for years...) and of course Aspirin 75mg. Magnesium and Zinc. Quite a bit!
After the shock of my diagnosis in Aug 2013, I refused treatment for a few weeks while I came to terms with it. I have a deep belief in listening to the body and going with nature. My haematocrit was 5.3 at that time and without venesection, my counts went down to a reasonable level by themselves! I then allowed a venesection at Christmas 2013 when haematocrit rose. My new haematolgist is sympathetic to my attitude but also realistic. Generally, I've had very few venesections over the last 3 years and my counts rise very slowly. I walk a fair bit and cycle. I don't feel the fatigue that most people report. I do get itchy legs in the morning and I avoid itchiness in the shower or bath by making sure I bathe in the evening! (strange one, that). I have itchiness in my legs right now but will go for a brisk walk after writing this and that generally sorts it. I have no other symptons directly related to pv that I know of. I have a normal working life but I rest and take it easy as soon as I feel I need it. I'm gentler on myself.
I do realise that I may well have to be on the drugs at some point but I'm trying everything in my power to put this day off! I know some people tolerate them well but I feel I am young at 54 and want to work with nature as much as I can.
Hope this helps. I would love to hear from anyone in the same position and especially anyone who has been taking Curcumin for a while.
Correction! In last reply, when I said that I had refused treatment, I meant immediate venesection at that point. I took Aspirin immediately and in fact in retrospect it would have been fine to have a venesection but interestingly enough, I would have never had known then the counts can come down without it. I am particularly keen in hooking up with anybody doing research with curcumin and pv.
I am also using food and aspirin. I only had 1 venesection when diagnosed a year ago. It's hard to get the medical community to listen about the food which is alienating.
I am sorry you are going through all this. I changed three hematologists and three hospitals before I found one I am satisfied with.
I would suggest you to contact Robert Tollen of american myeloproliferative disease support group, he has PV and also lives in Florida so he can recommend you a good hematologist. He has great knowledge of MPDs/MPNs, and I learned a lot from reading his posts. You can contact him on facebook m.facebook.com/groups/37552....
I so understand what you are talking about. I've been diagnosed for almost 13 yrs now w PV and I thought we would never get me feeling remotely 'normal'. The fatigue was and still is the worst of the symptoms, for me, tho now itching/burning hands & feet are right up there too. It took several years of phlebotomies to finally work out a balance, but I seem to be there now, for now. Please hang in there, because it IS possible to get past the early days of finding a balance and learning how to cope. I think I finally 'got over' the depression I had for quite awhile in the beginning by boring myself with it! lol It also helps big time to find a board like this where people know exactly what you are thinking, feeling--and don't look at you strangely. Finding a hematologist you can feel comfortable talking to is important. I'm still w the same one I had from the beginning and am 'fairly' happy w her. Amazingly enough, my cardiologist was very excited about my PV, so he helps me a lot, as well. Good luck, Harlie, and remember that there are people who understand where you are, ok?
Carol (from Arkansas)
Something I've been meaning to ask, do any of you who have PV have trouble with blood pressure and palpitations? I'm on 3 BP meds to keep it all under control. My pulse at rest was often at 129.
Hi Harlie,sorry you are so down and depressed.Did you see my post about having facial surgery for carcinoma ? That threw me into total melt down.At the same time my much loved dog died suddenly of cancer,he had seen me thru my worst days of P V in the beginning,a huge loss to me and I felt like just giving up....I struggled thru some very dark days,hubby too.So we left France and went to daughters farm in U K ,me still with half face covered and hair missing one side!!! Was booked to do two shows of my bronzes at up market Xmas Fairs,so that's what We did....I wore daughters fab fur hats and wraps to hide swellings and scars...do you know what...I felt my spirits lift.Great support from hubby ,daughter and friends whom without I could not have done it.So don't sink Harlie,there is still life for us,we just must work around the fatigue and down days. I am on Hydrea like many of us,I think it sorts out the blood...O K we still go up and down,but by and large it helps.Sorry to miss your post before,we were travelling back home to France,long trip by car,successful shows done and the will to fight on back in my mind.Got a chest infection now,I usually manage to pick up bugs at busy events.Our lmmune system is not all it should be.....hope you managed to contact the M P N person in Florida.Warm hugs and Best Wishes for feeling better,Keep Positive,you will find a way.xxxxSally
Brown rice, sweet potatoes, honey (natural sweetness), almonds all give me energy and are naturally high in energy related vitamins/minerals. Give em a try. I havent talked to you in a long time. I cant remember do you have a history of APS or a stroke?....im having a brain fart. Good intentions, Cindy in NJ, now Delaware, i moved😉
hi Harlie, i joined today and i was also diagnosed with PV and Jak2 two years ago. I have been on aspirin ever since. I also feel fatigued daily, my iron level is at 3 and HB is also on the decline currently around 13. Almost everything I do is at slower pace and I share your pain, to makes things worse I also have crohn's !
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