Anyone else with MDS/MPN suffered compression fractures?

[MaggieSylvie]

Just found out the pain I have had in my back for over four months is due to compression fractures in three (or possibly more) vertebrae. My physiotherapist says one thing and the haematology nurse says another about it being caused by osteoporosis or by the blood cancer. Is there anyone else out there who has this?

[hunter5582]

Not sure how the MPN/MDS would cause compression fractures, though the increased inflammatory response would certainly not help. Osteoporosis seems the more likely problem. I have not heard of a link between osteoporosis and MPN or MDS. Perhaps there is one that others more knowledgeable can comment on.

Chronic back pain is quite bothersome. I sure hope you fond relief soon.

[MaggieSylvie in reply to hunter5582]

I see some automatic editor changed fractures to factors! This back pain is more than bothersome. The Physio said that when the oedema disappears the pain might decrease. I'll have to wait and see what happens next. Preventative medicine seems to be the basic way forward and hopefully I'll get to "see" a bone specialist at some point. I have pain in my pelvis but there has been no MRI for that. You were up early, Hunter!

[hunter5582 in reply to MaggieSylvie]

I hope you do get relief soon. I have had the back pain flare so bad that I was immobilized. You cannot do much of anything when the back is really bad. The two things that really help me are seeing a skilled massage therapist for therapeutic massage and practicing Qigong (e.g. Tai Chi). Together the two things keep me mobile despite the ongoing spinal deterioration I have in lumbar, thoracic spine and neck.

All the best to you.

[MaggieSylvie in reply to hunter5582]

Thanks for your good wishes Hunter, Qi Gong is wonderful. I just find it so hard to even do the exercises the physio gave me. It's the timing of it following taking painkillers and then for the last two days my partner covered the bed in huge cardboard boxes and stuff. I have lumber, T4 deterioration and my neck clicks and creaks but is not the problem it was when I used to get migraines. Happy days. Keep safe!

[hunter5582 in reply to MaggieSylvie]

Some of the gentler Qigong forms are very helpful. If you do not already know the form. The Six Healing Sounds is really effective. I always do it right before bed. It helps me to fall asleep. All the best.

[Pte82]

Maggie, investigate boron for your osteoporosis. Although it's found in foods that may be sufficient for maintenance levels the levels needed for your osteoporosis will need a supplement source. Boron is available in 3 mg tablets. Start with 3 mg to check for any reaction and increase to 6 mg three times a day. Boron has been found to significantly reduce pain from fibromyalgia and arthritis. Pairing it with magnesium and K2MK4 will speed healing along. Always consult with your health care professional bedore using any supplement. westonaprice.org/health-top...

krispin.com/magnes.html

oatext.com/Boron-action-in-...

[MaggieSylvie in reply to Pte82]

Thanks Pte, but so far, I've been told I haven't got osteoporosis. I do currently take glucosamine chondroitin.

[Pte82 in reply to MaggieSylvie]

Maggie, do a search on causes of compression fractures. Here is a link to one. Ask your doctor for a bone density test. spineuniverse.com/condition...

[MaggieSylvie in reply to Pte82]

Thanks, Pte. That's a very clear and succinct explanation. I believe I had a bone density test within the last three years which showed nothing untoward. However, if the vertebrae are softer bones than others in the body, this might explain it. It's a pity everything has to be by phone these days. If my new haematologist has nothing to judge me on but my youthful voice, despite having my notes, he may be led to a faulty conclusion.

[MCW22]

I have PV Jak2 positive and have had 2 spinal fractures and have changes to other vertebrae so I dare say that in time they too will fracture. I firmly believe that the root cause is the blood cancer. When I put it to one of the haematologist she said, any condition that affects the bone marrow will weaken the bones. I'm in constant pain and my shape has changed dramatically. I have pain patches that are changed once a week but are pretty useless. Carol

[MaggieSylvie in reply to MCW22]

That is interesting Carol, and it makes sense. My fractures were referred to initially as "changes", too, but the transition from "slight changes" to fractures has been rapid. I haven't had any pain killers that work properly and they are probably wrong for this condition as well. However, I don't have PV and there are no mutations (that have been discovered). Did your spinal fractures occur as the result of an injury, or did they just appear one day?

[MCW22]

The first one may possibly have occurred when I lifted some furniture although I was fine for the rest of that day, it was only the next morning that I was in agony. Didn't get an x ray for 3 months as gp kept saying it was muscle strain. The 2nd one was exactly 1yr later and I suddenly had terrific pain in my hip but it turned out to be the next vertebrae up that had fractured. I was sweeping the chimney the week before so maybe that did it. I have changes to the vertebrae in the upper spine and it feels sore and tender, so wonder if that's going to be next. I have to sit down every few minutes, usually with my knees up and I can't stand for more than a couple of minutes without support nor walk very far without support. Prior to all this I was fit and the PV didn't bother me. Now I have aged and changed so much. It's so depressing.Carol

[MaggieSylvie in reply to MCW22]

Oh gosh, Carol - you are my mirror image. My first injury was moving a piano on my own but I was very young and after many years and a memory foam mattress, my back was fine. Now, more than ten years later, I was helping my partner lift paving stones through the house, and at the final threshold, my back gave way. Insisted on x-ray, but no surprise, it showed nothing. That was eighteen months ago, less than a week after my MDS/MPN diagnosis. Within a year it happened again when I was emptying ash and then a month after that, bending down to wash my face! Excruciating. Five months later and I am dealing with this new diagnosis of sorts and nothing much on the horizon for any relief. Like you, I can't walk or stand for long and after preparing a meal I have to rush in to collapse on my recliner. When I get up in the morning, I take two paracetamol and put the massager on for 30 minutes. That enables me to do the odd chore. The stressful time I have had lately has also aged me ten years and my body is changing so that I see myself as one of Picasso's portraits. I'm thinking of changing my user name to reflect this but one of my user names is Scarface, due to all the skin cancers I've had removed, so how far should I go? It is depressing, especially when one is treated as having no value.