I have been diagnosed with Myelofibrosis, and apart from initial symptoms of night sweats, my first significant physical symptoms were rapid onset of shortness of breath when walking up inclines followed by the added condition of discomfort in my thigh and glute muscles about a week later. The Jakavi has significantly reduced the shortness of breath when exercising however the discomfort in the thighs mainly has continued. Clopidogrel has eased this condition slightly but it is still a problem. I have been advised that myelofibrosis is an inflammatory condition, so, whilst it is not a common symptom of my condition, it is not surprising that I experience this discomfort in my thigh muscles.
Does anyone else experience this issue, and if so, have you managed to find a treatment that is successful in easing the severity?
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TimGS
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You are correct to think that MF, like other MPNs, is an inflammatory condition. This may be part of what is going on.
The symptom you are describing in your thigh and glutes could be any of a number of things. Dealing with the issue requires diagnosing exactly what is going on. I have been experiencing the same thing, particularly in my left thigh. I looked up causes and found this good reference. healthline.com/health/pain-...
In a bit of diagnosis by intervention, I had my massage therapist work on the muscles between the spinal column and the thigh. It felt like a nerve impingement to me. What she found was that my IT Band was extremely tight. While she worked on it I could feel it triggering the issue. When she got the IT band to release, the symptom went away.
Suggest that you review this symptoms with your care team and get input on what the probable cause is. There may well be a simple intervention that would bring relief.
Hi Hunter, thanks very much for your quick reply. I’ve been subjected to multiple investigations but with no outcome including an arterial scan which eliminated a blood supply issue. My discomfort is bilateral which seems to indicate an underlying condition, but I will try some massage as you suggest …nothing ventured, nothing gained! Thanks again for your interest. Cheers, Tim
If nothing else, the massage will just make you feel better overall. Be sure to see a skilled therapeutic massage therapist. There are different forms of massage and it does matter.
Glad to hear the arterial scans were clear. This may not be directly related to the MPN. I am wondering if the multiple investigations have included looking for nerve impingements? If not, it would be something to consider.
Thanks Hunter. I’m seeing my specialist soon so will discuss these possibilities with him, no nerve impingement investigations to date. By the way, my whole quads are affected, not just the upper parts. I’ll post the outcome of my specialist visit.
Hi, sorry to learn you are having so much trouble. I have ET, diagnosed almost 3 years ago but I also have thigh pain and gluteal discomfort which has been giving me grief for 8 years. Appointments with orthopaedics, neurology, rheumatology, pain clinic, physio (both NHS and private), chiropractor and massage therapists have resulted in a number of diagnoses, which includes arthritic hip and knee, lumbar 5 and sacral 1-disc desiccation, sacro iliac joint dysfunction, piriformis muscle, and sensitised muscles due to sciatica nerve irritation. I have been advised by them all to keep on doing my activities (cycling, walking, riding, gym, pilates, aquafit) but to reduce the time and distance, all easier said than done when in pain and experiencing limb weakness. I have a sports massage (ouch!) every 3 weeks and carry out all of the exercises that have been recommended by all the professionals over the last few years. I am very disciplined so do them daily but yet I am still in pain. It appears that these symptoms are hard to diagnose so I just carry on doing what I am told and hope one day I will wake up and it has all gone and my efforts have paid off. I have resigned myself to the fact that I am 64 years old and will have to put up with it, but I consider myself lucky that I am still in very good shape for my age and can do a lot more than many of my friends who do not have a blood cancer. I hope you get to the bottom of your problem, if you do, please let us know, good luck.
Hi Janis, thanks so much for your reply, very interesting. On the face if it your condition is the same as mine in that the symptoms are the direct result of the MPN. What I find amazing is that the muscle inflammation on exercise is not mentioned as a symptom of myelofibrosis in the literature I’ve seen anyway. Do you have Jak2 and any other mutations by the way, and do you suffer from breathlessness when walking, especially up inclines?
Hi, I have a Tet 2 mutation which is not very common, but I have also been advised that this mutation is often seen in older people who do not have an MPN. My muscle and joint problems started long before the MPN appeared, and I know this for sure as I have had many bloods taken over the years as a result of these symptoms and there was no evidence of inflammation or MPN. I do not suffer from any breathlessness on exercise, despite the aches and pains I am pretty fit and have a good cardiovascular risk score for my age. (I wish my bone marrow was in such good shape!)
have you tried acupuncture as it is number one for chronic and acute pain? I am an acupuncturist of 35 yrs clinical experience and specialised in the treatment of pain. You must use a fully trained acupuncturist ( not dry needles) who has a special interest in pain. Good luck
Many thanks for this information, I am keen to try alternative interventions if they help, what qualifications am I looking for when trying to select an appropriate practitioner?
please check that your acupuncturist is AHPRA registered and check with them if they have special interest in pain. I’m in Australia if you would to tell me which state/city you are in I can probably track one down for you You can private message me if you like.
Acupuncture is a 4 year university degree in Australia.
Hi Janis, thanks, that’s very interesting…I have three other mutations on top of Jak2, and it seems highly likely that these are responsible for the muscle issues. Like you I am keeping reasonably fit with pilates, walking and biking, and I am told that this will do no harm. Keep it up and good luck.
Hi I have this type pain on and off for years had short spells of it, always took naproxen or voltarol which took pain away was always worse laying down or sitting, lately been having more intense pain and lasting longer paracetamol was barely taking edge off and pain would return in an hour or 2, did mention to CNS she said see Dr if pain coming back after paracetamol wears off which I did had x Ray last week awaiting results, I explained to CNS naproxen or voltarol would take pain away but now cannot use and paracetamol does not help really, she said yes its right not to use those meds but if in pain and that helps take it as long as eating and drinking well, but not long-term use, so on 2 occasions now have taken just 1 voltarol which on both occasions took the pain away, am new to PV so don't know if this pain is related or completely something else but the pain you describe is exactly what I have
Hi, sorry to hear that you’re suffering like me. In my case being on Jakavi I am unable to take non-steroidal anti-inflammatories (NSAIDS), so that is not the solution for me. Have you tried Clopidogrel blood thinning medication, as this made quite a significant reduction on leg discomfort compared with low dose aspirin (Cartia)? My specialist thought that I might have had ‘platelet sludge’, so I must have! Good luck.
Hi Tim, no I have not tried Clopidogrel, am newly diagnosed on aspirin and venesections at mo, meds to start soon, will discuss at next appt on 24th anthing to help, I wish you well and hope you find some relief too
This popped up on notifications re Clopidogrel ! I am on it following the insertion of a stent in my thigh as I only had 15% blood supply to my lower leg. And now for ET too.
I have had no problems with muscles - provided I do get enough regular exercise.
When getting back after the stent, I still had calf pain. This was solved by a good physio working out that my muscles were not doing their jobs correctly and giving me strengthening and positional exercises.
Hi, many thanks. In my case I think there is a chemical thing going on in the muscles, and I’ve tried massage myself without any perceived benefit. I am keeping reasonably fit with and active with plenty of walking, albeit with discomfort when I extend myself.
by physiotherapy I do not mean massage but the physio working out if the muscles are working correctly and helping you correct it through specific exercises if not!
Yes, point taken and I’ve been assessed by a physio and he found no issues. My specialist has two days ago put me on some Cartia now in addition to the Clopidogrel, so hopefully that will help. Thanks.
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