Hip Aches

[P-O-T-S]

Hi all, I hope your all doing well, it’s been a while since I posted. I have started to get these really painful hip aches and was wandering if this is a symptom of MF that anyone else suffers or something else. It’s first time getting them for a year, used to get them regular before diagnosed last year but then they stopped for about a year.

[Swede]

Yes, I get them now. It all started with hippain 2005 and I got diagnosed 2007-8. The hip pain more or less went but the last year it is back again. It is even more intense now. Not sure why...

[P-O-T-S in reply to Swede]

Thanks for replying Swede, maybe it’s just a symptom as the place that has active bone marrow in adults is the hips! Not sure though just a guess! Maybe some one else will know

[Ameliav]

I have PV and that s the only symptom I have . The ache is almost always there but it s not to bad to bother me or restrict me in any way .

[Deefen]

Just make sure it’s not something else - I was getting hip pain and when I mentioned it to my fitness instructor she worked out I was doing lunges incorrectly, using my quad muscles instead of my glutes - when I corrected this, the pain instantly went away. I’d had it for months!

[SilverET in reply to Deefen]

Hi Deefen,

Could you tell me how you changed your lunges to isolate your glutes and not your quads as my hip pain is always worse after doing lunges following running. I have suspected that I have been not using my glutes enough but can't seem to correct it properly. I have had ET for over 30 years since I was 17 ith no hip pain til recently so I am almost certain my hip pain is not due to the MPN but rather age and incorrect exercise technique.

Thanks, Silver ET

[Senoritakazza]

I have ET and I have hip pain too, it started about 4 years ago, I find that Magnesium Oil Spray helps ease the pain or even a bath with Epsom Salts

[Searcher56]

Hello POTS,

I used to have a bothersome right hip for years, I put it down to driving a car. When I have been driving a long distance, I am terribly stiff afterwards. But when I was diagnosed with ET in 2016, I started to look after my health, I gave up eating rubbish, invested in good quality supplements, detoxed from heavy metals and started exercising, a walk in the part and yoga, leg exercises with weights. Now the right hip is not giving me trouble any longer.

[Jschwab in reply to Searcher56]

how did you detox the metals?

[Searcher56 in reply to Jschwab]

First of all it is paramount that one stops taking in these chemicals in processed foods, for example, and all sorts of personal care products and household chemicals. I use organic or near organic shampoos, deodorants, tooth paste etc. and just to think do I actually need all these chemicals in my life, like air freshener for example. And when I fill my car with petrol, I use the disposable gloves provided so petrol does not get into my skin and from there into my liver.

There are many supplements that help with detoxing. You can find information on the Internet. I regularly buy a bunch of coriander from the local Asian shop and put that in my smoothie, it is said to clear the digestive track. All this detoxing takes time, maybe even a couple of years but it has cured many of my small ailments, I believe, like ingrown toenails, bothersome earwax to give a few examples and of course my right hip.

[Lifam]

I have ET I have little hip pain but I have them often because I have spinal problem but lately I have muscle pain on my left arm and joint pain around my hands and that I believe it's one of the HU side effects start hitting me.

[Cja1956]

I was getting hip pain in my 40’s. I went to an orthopedic doctor And after some tests, he told me I had arthritis. When I was 52 I got diagnosed with ET. I always wondered whether it was all related since ET causes inflammation. You should have it checked out.

[Leighcox85]

I have mylefibrosis jak 2 positive I have had it 10 years since the age of 24 I get hip pain a lot now my doctors told me that we produce bone marrow in our hips and mylefibrosis scars that marrow so when it’s active we feel the pain as it develops there I find soaking in a warm bath with bath salts helps a lot and stairs are best avoided but I do think it comes with the territory unfortunately x

[hunter5582]

It is hard to tell sometimes what is the MPN and what is unrelated. Joint pain can occur for other non-MPN related reason; however, for those of us JAK2+ - the mutation can cause the body to produce too many inflammatory cytokines. This cytokine overload is thought to be responsible for many of the inflammation related secondary symptoms people with JAK2+ MPNs experience. As you saw from the other comments, hip pain could also be directly related to the MF Rather hard to sort it all out with a symptom like this.

I have JAK2+ PV and experience a host of inflammation related secondary symptoms, including osteoarthritis. At age 64, some of that is just part of aging, but I think the cytokine overload likely contributes to the problem. I tried a Turmeric/Curcumin blend at the recommendation of a rheumatologist. Since I started that about three years ago, I have not needed nor taken any NSAIDs. For me, the Turmeric/Curcumin works better than NSAIDs and has had not adverse effects. I just saw a piece of research referenced on this forum with a finding that Curcumin can have positive impact specifically for those JAK2+. Like any supplement that works, it can interact with other meds - so it is important to keep the prescribers in the loop on what you are taking.

Hope you find some answers soon. All the best to you.

[Deefen]

She looked at me doing them and said I was using the thigh muscle in the front leg - not the quad (arse😘) muscle in the that leg. You have to concentrate on pushing through your front heel and using your glutes to push yourself up, not your thighs. Your thighs work a bit - but needs to really be your quads doing the pushing. And make sure you’re going straight up and down, like you have a strong attached to your head pulling you up and down.

Does that make sense? If it doesn’t, maybe get a PT to show you how to do one correctly?

[SilverET in reply to Deefen]

Thanks Deefen. I'll see if I can try to change my technique.

SilverET

[clubdino]

I'm 42 and have had ET for quite a while now. I started getting hip pains a few months ago and the first thought that crossed my mind was "oh no, I hope this isn't turning into MF," as I had heard a symptom of MF was hip pain. The pains come and go.

[P-O-T-S]

Thank you all for your replies, it’s been very helpful, much appreciated!