I am awaiting results at the moment but I am so tired and I got bloods taken on the 3rd March and my veins in my arm are all sore from this. My tummy on both my right and left is sore too and there is little lumps that are sore to touch.
I was a previous marathon runner but I get very breathless even walking now, I am now overweight and I did start back exercising for the new year but with the breathlessness and fatigue I find it all so hard.
I would be grateful for any advice please.
I do hope you are all doing okay.
Much appreciated
D
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De12
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It must be so hard not knowing what results are yet.
Have you started a b12 supplement meanwhile? Also how are other vitamin , mineral levels vit d c iron etc . Might be good to see if other deficiencies.
Qi gong is very good as it is gentle but can really stimulate the system .
If you are interested I could let you know of some simple u tube sites to look at
Or yoga ?
Accepting change is not easy . Please think what you can start to do even if it appears minor.
What is your diet like . Many people recommend anti inflammatory Mediterranean style .
Thanks for your reply, it is terrible to wait but I wish the symptoms would easy off and that I could get some energy back that the worse symptom that affecting me.
I will look up the Qi gong and see if I could manage some light exercise.
My b12 is low so maybe this is the cause, hopefully I know something soon.
I got word yesterday that I don't have a connective tissue disease, which is good news.
Hopefully your blood work included a complete nutritional evaluation. There are various deficiencies (Vit B, iron, etc.) that can contribute to fatigue. Abdominal pain and nodules sore to touch are also caused by multiple causes. Did the doc look at those symptoms too? Certainly some of what you describe could be linked to a MPN. Do you have a MPN diagnosis at this point?
QI Gong can be very helpful. Tai Chi is one form of Qi Gong. There are many more. Here is one example.
Many thanks for your reply, I had pain in my right and left dude tummy before but now the lumps are new, I have them fir about 2 weeks, I am awaiting for my GP appointment.
In 2013 they said ET but negative for JAK 2 and re tested for this and other genetic testing at the beginning of March.
Maybe the low b12 is giving me the sores lumps on both sides.
The heamotologist said it takes 4 weeks for genetic testing, I am a bit fed up as I feel ill and tired.
The kind of pain you are reporting is the body's warning sign. Could be very minor, but certainly not to be ignored. Hopefully you will get the results back soon and know of you are positive for CALR or MPL. Could help shed light on your situation.
There are of course multiple reason you could be feeling lousy. No matter what the cause, it is worth getting answers. Hope you get relief soon.
That sounds awful, especially as you used to be so active. I just had to reply to let you know that people care. Many people don't realise the side effects MPNers suffer and it's not just about motivation. I do hope you are feeling better soon and that you get some answers. Best wishes.
Hi de12I’m So sorry to hear This. I hope you get your diagnosis soon and can then take steps to improve your health and well-being
It’s terrible not completely knowing what’s going on.
I went through this for a while.
My symptoms got very bad just before the pandemic and then I had limited access to hospital appointments because of this!
I was an active person did running, running around after my daughter, active in my job but this all came crashing down and I found it very difficult to come to terms with this. I used to find it physically too exhausting to talk sometimes so my Job which involves talking all day was impossible!
I did counselling through a charity for healthcare workers in the uk and they also did weekly weight training exercises with me and I felt it helped so much. Yes I still can’t run like I used to but my energy levels are better and my muscles are stronger
I finally got diagnosed with essential thrombocytosis but by then the counselling and weight training was already in place so I found it easier to talk to them
About it
I am feeling a lot better with energy levels now 🙏
I hope my story gives you hope that although this might be the new normal for many of us there are ways to optimise our new normal as much as possible!
Thank you for your reply, I hope I feel better soon, its great that you are feeling better in your health, it definitely is a true saying the,,, "your health is your wealth".
It's great to have this site and read all the different stories and thank you for your story and know I'm not the only one going through difficult times.
Hi De12. I agree with everything Mood2020 said. My gym instructuctor had to change my whole gym session and remove most cardio due to fatigue. My gym sessions consisted of weight and floor exercises.
I can still do the floor exercises at home , ie plank, sit ups etc when gyms are closed.
I remember going to the gym and doing cardio and i was so exhausted but i was so determined that my ET was not getting the best of me but i was then coming home and going straight to bed. That was just stupid. So i had to change the way I thought about my ET and adapt my exercise. Once we changed my exercise regime I was feeling great by the time i left the gym and was doing more things once I got home.
Hi the wait is daunting. I think You must be careful until you get a diagnosis. Maybe addressing the weight issue and going for small steady walks might help. By now you should have a blood test results. I suggest you get a copy.Do not hesitate to contact this site it’s really supportive
I haven't received my blood result from the heamotologist yet, but got result from Rheumatology and no connective tissue disease which is great. I do have a low b12 and elevated platelets for years but I have a lot of symptoms that are bothering me.
I results in 2013 were negative to jak2 in 2013.
This time I got a lot more blood test, I'm not sure what happens if there negative as I feel exhausted.
If my platelets go over 450 I’m a sofa slumper!! You can be negative for mutations but still be diagnosed. My mutation Calr was only discover in approximately 2015. Hang in there
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