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Essential Thrombocythemia: Looking for information and support

Blood Cancers & Disorders | Last Active: Jun 17 9:11am | Replies (504)
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@jola13

I’m the same I have no energy and get extremely tired went to clear the pond plants today as they had over grown. 10mins was all I managed. I also had to stop my pain meds as Im already on 75mg aspirin and the meds were also aspirin based. I have neuropathic Pain following complicated previous surgeries on my spine. I also have extreme joint pain, so at the moment am in agony. Have been prescribed co-codamol. 3rd week on HU, also take Lyrica, Sertraline. Nothing really helps with the pain - I try to distract myself it is hard.

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Replies to "I’m the same I have no energy and get extremely tired went to clear the pond..."
nohrt4me | @nohrt4me | Jul 16, 2023

I am very sorry that pain is a constant battle. I think ET is one of those things that is manageable on its own, but that complicates other things. I have severe scoliosis along with the bad mitral valve (there's a corrollation, I guess), and yoga helped with back pain. But, honestly, I had to start with just lying in bed in neutral spine position doing deep breathing at first. Can do more now. Took care of the sciatica and pinched nerves. But I still am very bent when walking without a cane, and can't go distances.

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albertedward | @albertedward | Jul 16, 2023

I also have no energy as I try and help my son on his new house I spend 10 minutes and then I have to set down and that's it for the day.I take 2 hydroxarea 5 days a week and 1 on weekends.My numbers came way down and hoping they will drop the dose.I am not sure if it is PV or the drugs.But it really disappoints me as I love to work.Good luck to you and will let
You know if there is any change.

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