Is this ET symptom or Hydroxy?

[azaelea]

Hello all, does anyone with ET experience upper back pain? For the past week or so my upper back ribs have been aching and I'm not sure if it's bone pain or muscular. Today my left shoulder has also begun to hurt. I have previously read on this forum of people mentioning bone pain and wonder what causes it. Be interested to hear from you. Fran

[hunter5582]

Yes to the back pain. Upper-middle-lower - especially lower. In my case it is due in part to age-related spinal deterioration (verified on CT). I believe it is also related to the JAK2 mutation and the overproduction of inflammatory cytokines. Systemic inflammation is not our friend.

The kind of bone pain I think folks with MPNs experience is, I think, different than what you are describing. Perhaps some who experience it can weigh in on that.

Do be sure to follow up with your treatment team re. the back pain. It is certainly quite problematic, but the source not always what you think it is. My lower back pain is largely driven by issues with my hip flexors. "The hipbone is connected to the backbone" as the old song goes. I see a fantastic massage therapist who keeps me functional without drugs. She is amazing! The Qigong also really helps with the back issues.

Hope you get it all sorted out ASAP.

[azaelea in reply to hunter5582]

Thank you Hunter, I always take note of what you say. What is the Qigong?

[hunter5582 in reply to azaelea]

Qigong is a Chinese health and healing practice. Tai Chi (Tai Qi Quan) is one form of Qigong. There are many more forms. When used for healing, the practice is called Nei Gong. Qigong is both good for the body and the mind. It promotes mindfulness and helps to deal with the anxiety many of use face dealing with MPNs.

If you get interested, it is important to find a qualified teacher (Sifu). This is not something you want to learn from some karate guy who took a Tai Chi class. There is actually a lot to Qigong and the teacher needs a very solid foundation, much like a doctor or any other practitioner of a healing art.

I sure do understand how it is to be dealing with back pain. Hope you get some relief from the issues soon.

[azaelea in reply to hunter5582]

Thanks for clarifying this. Sounds very beneficial.

[MaggieSylvie in reply to hunter5582]

I learned a really tricky Qigong action at the end of the fifties! I always intended to find out more, but it was only last year that I actually attended a class at the Blind Veterans holiday home in Llandudno (my partner is blind). It was very simple to do and I felt the benefits immediately. I found myself close to tears that it had taken me so long to get there. Sadly, I have done very little about it since then. Thanks for the prod!

[Cja1956]

As we age, it’s normal to have some muscular aches and pains. I’m post et mf, having been diagnosed with et in 2008 at age 52 and mf last year. However, in my 30’s, I was diagnosed with fibromyalgia and in my 40’s, arthritis in both my hips, lower back and shoulder. After finding this site about 2 years ago, I learned that mpns are another form of inflammation. Last year I tried yoga for 3 months and it was extremely painful on my arms and I had to quit. Now I wonder if after all these years, if I had ET much earlier in life, but just wasn’t detected.

I wish I had some better answers for you.

I wish you all the best.

[azaelea in reply to Cja1956]

Thank you for your reply. Yes I have heard about MPN's causing inflammation so think that's the answer. We just have to get on as best we can.

[wotan10 in reply to azaelea]

Greetings from Fleetwood England.

So sorry to hear of your discomfort.

Perhaps first and foremost mention this to your team before self medicating.

A phone consultation may be beneficial for you.

They may suggest some form of light exercise and or physio.

I was suppose to have frozen should x 2.

Whilst on holiday a lovely massive told me not to go for surgery.

Good job.

It was my gall bladder playing up.

Had a cholecystectomy performed. Pain now gone.

This was about 12 years ago.

But please get checked out first.

We are not medics on here.

In friendship

Annemarie.

[azaelea in reply to wotan10]

Thanks for your reply. I have a telephone appointment with Haematologist arranged for July 9th when I shall definitely mention this.

[hunter5582 in reply to Cja1956]

There are some of the QIgong forms that are beneficial and very easy on the joints.

Taiji Qigong 10 forms

youtube.com/watch?v=asJzU2K...(Not working as expected?)

SIx Healing Sounds

youtube.com/watch?v=_yMHHhx...(Not working as expected?)

There are many more. If you are open to what this is really about, it can be very helpful. Qigong does more than the gentle stretching and balance benefits. It is about energy flow and keeping you internals balanced. It shares a lot with acupuncture in terms of what it does.

Encourage all to give it a try. It won't hurt you and may well benefit you.

[azaelea in reply to hunter5582]

Thanks so much! Will give it a try. Appreciate your info. Regards, Fran

[Uzza]

I have pain from everywhere. I find gym helps tremendously. If you can get passed the initial suffering from excercise shock of unused muscles.

Cheers,

Uzza

[stillkicking]

I realise I am a bit boring and old fashioned about all this, but I think that it is best to first consider if our aches and pains are due to the things that most people experience, such as poor posture, wearing out of joints, muscle and tendon strains and so on, as these are really the most likely culprits. Only when those things have been thought about and tested, move on to the ET or Hydroxy.

What I would be on the look out for with ET would be unusual head aches that were rather like migraine, burning fingers and toes, nose bleeds and so on or any suspicion of thrombosis, those things would have me making an appointment to see my long suffering GP!

I write as one who has numerous aches and pains myself (so I am speaking with great sympathy!) and also have ET and take Hydroxy.

Very Best Wishes,

Peter

[azaelea]

Hello Peter, nice to hear from you again. I don't think you're boring and agree you are probably right about aches and pains being due to posture, strain etc. And I'm sure in my case, old age and being in lockdown since mid March although I've tried to exercise in the garden as much as possible. I've just recovered from a small clot in my little toe that gave me a few weeks of chronic pain and some hospital investigations so I know what you mean about things to look for. I have telephone consultation with Haematologist next week and have been on Clopidogrel instead of aspirin since toe problem. Also on Hydroxy .I hope you are keeping not too bad and soldiering on. Take care. Regards Fran.