MPN with ME / CFS diagnosis?

[StuEP]

Hi Everyone,

I have recently been to see a new haematologist who has asked my GP to look into whether I could also have ME or Chronic Fatigue Syndrome. I am wondering whether anyone else on the forum has been checked for, or diagnosed with either of these conditions?

As I have previous written about on the forum, I was diagnosed with PV/ET 16 months ago, but despite having chemo and seeing my counts return to the normal ranges, my symptoms have not subsided, and in some ways have continued to get worse (mainly fatigue, migraines and brain fog).

I know I am not alone in continuing to experience debilitating symptoms despite treatment, as this seems to be a recurrent theme on the forum. My concern is that a diagnosis of ME (which itself has few treatments and no cure) could mean that the clinicians just give up with trying to manage my symptoms, which are all known MPN symptoms. I really don't just want to give up hoping that I will someday feel better, rather than resigning myself to feeling like this for the rest of my life, which seems to be what an ME diagnosis would mean.

So if anyone else has any experience of this and is willing to share, it would be greatly appreciated.

Kind regards

Stu

[Aime]

Hi Stu, before I had a firm diagnosis of PV, ME was spoken about but not since my PV was confirmed last year. I agree the symptoms like fatigue, itching, migraines and brain fog don't tie in with blood results. I have just had an increase in ocular migraine activity yet my HCT was .44. How do they diagnose ME or CFS and separate the symptoms from our MPNs? Sorry this is not much help to you but at least you know you are not alone. Best wishes Aime

[babbittybumble]

Hello Stu, Just wondered if your Haematologist is familiar with Myeloprolific disorders as they are quite rare. From what I have read from other people , fatigue can be a major problem and seems to be a common complaint. Hopefully someone with a similar situation as yours can help you more,as I am an outsider of any of these problems.Bye

[BlessedWithSix]

What is ME?

[jazzyb]

Hi Stu. I was diagnosed with PV in 2007 & have always felt the same (bloody awful) whatever my counts have been. I think it's due to the fact that our bone marrow is constantly working overtime which they can't do anything about. I've managed to avoid the dreaded oral chemotherapy until a few weeks ago as my platelets were over a million, I'm on a low dose until 3rd June which will then be doubled. So far I don't feel any better at all and the tiredness & light headedness are worse. Do you go to the Hallamshire in Sheffield, if so which consultant do you see?

Regards

Jane

[StuEP in reply to jazzyb]

Hi Jane. I've heard the same as you about the cause of feeling rotten - it makes sense. I was at the Newcastle forum a few weeks ago and a few people seem to be like us and don't feel better with treatment. I have heard that it can take up to 6 months to adjust to the chemo and personally it took me about 6 weeks to feel any different. Problem is that after getting a little better I have gone back to feel the same, possibly worse, though in part that may be down to the chemo, which is why i was surprised about the ME suggestion. I'm not sure if we're supposed to name people on here so let me just say I'm seeing the Prof. Know who I mean?

[StuEP in reply to jazzyb]

Ps - mind sharing your pattern of symptoms? I'll start - mainly fatigue. I can go days, sometimes even a couple of weeks just feeling a little run down but then the fatigue hits and I go from having to sit down a lot when I'm standing or walking to being fully bed bound 1-2 days. Migraine with aura - comes and goes without pattern. Lasts several days or weeks. Lightheadedness - had a really bad bout lasting a couple of weeks recently. Usually I'm a bit slow, can't concentrate, minor problems with speaking (Spoonerisms and forgetting words) and just feeling dizzy and nauseous. No pattern to this and getting more frequent. Random breathlessness. Lastly, bouts of dry skin, eyes and lips. None of these things have a pattern but they're not constant and getting stressed does make it worse.

[jazzyb]

Personally for me the worse symptoms have been extreme tiredness, constant light headedness, which I absolutely hate & was hoping this would be the one thing the chemo would make better, early days I suppose, itching & brain fog (I'm just not as sharp as I used to be!). Like you say there's no pattern to any of this & I feel rubbish all the time. I am also a worrier which doesn't help at all. Going on Hydroxy was a huge step for me, I really don't like having to take something so toxic for the rest of my life. Having said all that I work part time, try to carry on as normal as possible & walk my dog which I find is good for my well being. I do find trying to juggle everything difficult though & I feel I push myself too much trying to keep my mind off the PV (& other health issues - malignant melanoma, basal cell carcinoma & alopecia). I also wish I didn't have to work! I don't see Prof but I know who you mean. I see Dr Morley (hope it's ok to say that) & have seen him since 2007.

[graymare]

Hi stuEP, I was diagnosed with CFS a year after having glandular fever. It was blood tests for CFS that showed up my high platelet count and continued procedures confirmed ET. My platelets were managed for 18 years by aspirin alone at my request----I felt managing CFS was battle enough. The symptoms of CFS gradually reduced over that time, almost to zero, but the platelet count moved higher and now I am on Interferon alpha. To me, the symptoms are almost identical---CFS was great practice for Roferon-A, although the pain in the legs is greater with the injections. My haem said that was because of CFS my cytokines are disfunctional. It is important, tho' difficult, not to worry. Eat really nutritious food, find at least one hobby to enjoy with friends, old or new. Make plans to have at least one good happening to look forward to and do it in spite of how you feel. Get adequate rest. Know that however much of a bummer your situation may be, it is what it is and you have not died, so give yourself as good a life as you can. At least, these are the things that have kept me going even if I can't bend down to pick up anything I have dropped and have to struggle to tie my shoes. I was so athletic and energetic before! I hope things improve for you and you manage to have a happy and fulfilling life.

[meanJ]

Hi Stu,

I have had PV for over 4 years, Have experienced the same symptoms however, they are keeping my hct's no higher than 42 and I'm now on hydrea. The pruritus (itch) and a lot of my headaches have lessen. I still get foggy brain although it isn't as bad either.

[StuEP]

Hi everyone,

Thanks for your replies. The hospital is continuing to test for less likely causes for my symptoms, rather than just consign me to a diagnosis of ME, which is encouraging. Since writing my question I have become aware through the hospital that it is not unheard of for people to be diagnosed with both conditions and at least one other person in my area appears to have been given these diagnoses recently, so I guess that it may be something to watch out for.

Thanks

S

[StuEP]

Hi

I just thought that I'd give everyone an update on what happened with the ME / CFS diagnosis.

Well, I have continued with my treatments for MPN, these being aspirin, hydroxycarbamide and venesections but despite my counts being almost normal, my symptoms of fatigue, migraine and brain fog have continued to get steadily worse, which my haematologists continue to insist cannot be due to the MPN.

I must admit that I have been skeptical that my symptoms were not being caused by the MPN; after all these symptoms are typical of the illness and, from what I have read from others on this forum, others continue to have symptoms following treatment. Also, my specialist nurse is equally sure that other MPN patients at the hospital also continue to have symptoms despite normal counts maintained through treatment. In fact it was the nurse who recommended to the haematologist that I be tested for CFS as she says that at least one other MPN patient has been diagnosed with both conditions.

So, since I last wrote about this, my hospital carried out a comprehensive round of tests to check for other possible illnesses that might cause my symptoms. They do this because CFS is a diagnosis of exclusion - meaning that there's currently no way to test for CFS directly, so that once everything else is ruled out the symptoms lead them to a diagnosis of CFS.

Having spent some 6 weeks doing tests the hospital did indeed diagnose CFS and I was eventually referred to a specialist clinic dealing solely with this condition. Before I had my first appointment with them their doctor recommended some other tests that they thought appropriate and from this my GP also found that I was suffering from a chronic vitamin D / calcium deficiency. I have been told that vitamin D testing is quite a new thing and that its deficiency may be much more common that previously thought either due to some people's lifestyle or the type of medication I am on. That's something to think about!

As I wrote above, I was skeptical about having CFS but after attending a seminar, sitting in a room full of other people with the same diagnosis and having listened to the experiences of these other people, I have to say that my opinion has changed. The important thing is that this service we have here in Sheffield actually has a programme geared to help people overcome fatigue, which is such a relief as I thought I would be struggling to manage this on my own for the rest of my life. At the session we heard from a lady who has used the programme's pacing techniques to manage fatigue and she went slowly from experiencing fatigue comparable to mine (quite debilitating) to now leading an almost normal and active life.

Well, I hope that those of you with an interest in combating fatigue have found what I have written to be of some use. I am not trying to suggest that everyone with fatigue has CFS, but having tried to manage fatigue on my own since 2007, I am very grateful to have been referred as I finally have found an NHS service that has some method of tackling my symptoms rather than just my blood counts.