MPN and M.E.

[Hildrethbird]

Is anyone suffering with both? I have heard recent research has linked MPN to stress, also ME has been linked to overwhelming experiences and situations or burn out in high stress jobs/life etc.

Has anyone found a stimulate that has worked, to stop the brain fog and the physical exhaustion, which affects everything?

I used to have an entrepreneurial mind, rushing from A to B, buzzing and arranging all the time, couldn't even spend 10 mins lying in a bath .... now I can hardly get up in the morning and walk around like a zombie.

Just asking is anyone can relate to this, because it is NOT me xxxx

I asked my doctor if there was anything ? .......... nope, just left to suffer this total exhaustion

[PupsBestFriends]

One possible cause of myalgic encephalomyelitis describes chronic inflammation, and MPNs are an inflammatory disease. Some research shows that people with MPNs are more likely to develop autoimmune diseases as well.

I have never been tested for or diagnosed with ME, but certainly experience many of the symptoms. These have all commenced in the 21 months since my PV diagnosis.

I find the severe fatigue, brain fog, dizziness, muscle and joint pain, and post exertional malaise make most days a challenge. As you said, mornings are a chore and zombie best describes the tone.

Intensity of symptoms fluctuate rapidly even at rest, but especially with mental exertion or activity. The oddity is that I can walk on my elliptical for 25 minutes without difficulty, but a 5 minute walk around the yard can trigger shortness of breath and initiate an episode.

Not sure what testing could be done to determine the cause as being MPN vs ME. It seems that ME is often the diagnosis when other possible causes are eliminated. I've been told by some medical providers that PV is certainly the reason for my problems, while others have said it must be something else, possibly neurological.

Best wishes, and I hope you find some relief. Until then, long live the zombies!

[CraftySpider]

Hello Hildrethbird..yes, I have Myelofibrosis ( diagnosed 20 years ago) and ME ( for 34 years) ..also hypermobile joints..possibly Hypermobile EDS.

I often wondered about the connection between ME & EDS , as have heard of others with both, but never linked a connection to MPN’s.

Will follow your post to see how many others are in the same boat.

And yes, permanent utter exhaustion and brain fog..not a good combination of chronic conditions !

[KLCTJC]

I don’t have ME, but I have MS. I have the brain fog and dizziness mostly associated with stress or at the end of the day. Mine has improved since I started Besremi. Are you on any treatments?

[Linnie5]

Hi everyone - I also diagnosed with ME some 20 years ago about 3 years before being diagnosed with ET . I also have fibromyalgia and Brochiectasis (although not bad).

I also would also be intrigued to see who also has ME Pacing myself is key

[Delightedbyhares]

Hello Hildretbird, I have triple negative essential Thrombocythemia, Fibromyalgia, chronic fatigue syndrome, possible long covid and hypothyroidism. The exhaustion, constant pain, brain fog and sleep disturbances etc have meant I’ve had to give up my job and now live a very different, almost reclusive life. When I recently asked my lovely doctor for more help, she said “ oh you poor thing, you do have a lot going on… bless you” but she couldn’t offer more than I’m already having. Amitriptyline at night. Aspirin, Parecetamol. I’ve tried lots of other stuff- Gabapentin etc but, had bad reactions or no relief while on them. It’s a case of trial and error I’m afraid. What works for some may not work for you. I wish you “good luck” in your quest!!