ET/MPNs cause or irritate musculoskeletal issues

[Grendall]

Hi all,

I hope everyone is keeping as well as they can be….

I have read a few stories and queries on here recently and it peaked my thoughts. I have had a few issues over this last year but these were old irritants let’s say from earlier years.

1) I went through a period quite a few years ago of let’s say ‘a dodgy knee’ with pain from exercising over the years, you go see your GP and generally told ‘wear and tear’ fair enough

2) I had a few back issues also with pain and aches, again given a few meds and classed as ‘wear and tear’ But got this terrible kind of nerve pain near my left flank area a few years ago that became constant and was treated on 2 occasions as initial kidney stones as only morphine would take the pain away, anyway scans didn’t show anything kidney wise and sent on my way.

Then last October it developed again and it came with a vengeance and wouldn’t go so went to A&E, wait time 9hours and couldn’t stand it, decided to come home in pain and no sleep at all and go to GP next morning who rang the renal department and cut me through the line.

Long and short, scans and a proper renal consultant ruled out kidney stones but noted ‘degenerate disc disease’. After trying 4/5 lots of different meds, physio, Osteopath and nothing working and being in the worst discomfort of my life, this made me let’s say ‘not want to be here anymore’ GP at this point managed to get me urgent MRI which confirmed DDD and disc desiccation, one more set of meds later and hey presto, I got some relief, I could have kissed her she gave me my life back (albeit temporary until I get my appointment with the MSK unit…still waiting 5months later) 🙄

So sorry for ranting on but my question being, do we folks believe that our MPNs aggravate other conditions within our bodies? as these older ‘wear & tear’ problems seem to be brought to the fore big time now…..I’m just curious now reading other people’s stories

I know that if you ask your Heamo they ‘Vito’ lots of things but I believe this is because of the rarity of our diagnosis and ongoing research

[Minu68]

I had minor arthritis in my right hip, this progressed to needing a full hip replacement within 2 years, at age 51. Haematologist was very clear that the rapid deterioration was because of the ET and it’s overreaction to any inflammation.

[hunter5582]

The answer to your question would be a resounding YES. The body is an integrated system. Nothing occurs in one part of the body in isolation of the rest of the body. While the degenerative disk disorder is not caused by the MPN, the two condition impact each other.

One of the ways that MPNs affect the body is that the deregulation of the JAK-STAT pathway causes the overproduction of inflammatory cytokines. This proinflammatory environment causes a host of problems.

The kind of injury to the body caused by a condition like DDD triggers problems beyond the spine and the nerve pain. Reactive thrombocytosis would potentially be one of those issues. Chronic pain also causes a release of different chemicals in the body that in the long-term can be quite harmful.

As wonderful as many of the specialists we see may be, they sometimes lose sight of the whole body as an integrated system. Holistic care is ultimately more effective care. Your GP can help with this. I consult with an Integrative/Functional Medicine doctor for this reason. Integrative or Functional Medicine docs treat conditions viewing the body in a holistic fashion. They are also more knowledgeable about complementary health approaches should one be interested in pursuing that option.

I also have spinal deterioration, though not as severe as you are experiencing. I would be dysfunctional if not for the care received from a skilled massage therapist. One thing I have learned is how accurate the old song is. "The back bone's connected to the hip bone. The hip bone's connected to the thigh bone. The thigh bone's connected to the knee bone...." Much of my back pain is related to issues with the hip flexors, IT band, quadriceps, and knee issues. Working on these issues relieves much of my back pain.

Wishing you all the best as you work towards a solution.

[Grendall in reply to hunter5582]

thank you for your reply Hunter, as always very knowledgeable for us on this forum. The holistic approach sounds a good idea and I will definitely be looking into this….

Yes I agree with everything you have said and it is the fact that it’s good to know, we are not going crazy in all of this, when weighing things up there has to be a ‘knock on effect’ with what is happening in our bloods in some form or another surely. I do have copies of my MRI results as well my GP managed to cut through the NHS referral system due to how bad I was and how low I had got, it’s just that I have also recently moved home about 6 weeks ago, therefore my referral from one hospital will have got cancelled as I have been unable to contact the right department at all, I have a GP appointment at my new GP on Monday and will have to ask him now for a new referral but will have to start the process all over again and in the UK the wait period is a good 4/5 months just to get to see a specialist on a first consult. I am ok on my meds at the minute but I need to just take things steady, thank you again for your full insight and knowledge x

[hunter5582 in reply to Grendall]

Hopefully the new GP will be able to help cut through the red tape. Given your situation, that would certainly be in order.

Given that you are changing your base hospital, now would be a good time to ensure that you are consulting with a MPN Specialist rather than a regular hematologist, unless you have already made that arrangement. While important for all with MPNs, with cooccurring conditions like you are experiencing, this is even more critical. Just in case you have not seen it recently, here is a list. mpnforum.com/list-hem./

Some hospitals and oncology centers have an Integrative Medicine unit. There are also Functional Medicine docs you can consult with. I believe some are in private practice. This is a list of Functional Medicine docs worldwide. ifm.org/find-a-practitioner/ I have not seen a list of Integrative Medicine docs for the UK. Perhaps you can find one.

Assertive patients receive higher quality care. Passive patients do not. We must be out own best advocates in healthcare. If you find that you are having issues with accessing care, I believe there are organizations like POhWER that can help.

nhs.uk/conditions/social-ca....

Wishing you all the best moving forward.

[EPguy]

I had mild joint etc issues (PV, with HU then Besremi) till the adverse vax reaction trauma I've posted about. Among the tests was MRI that showed the DDD and desiccation in my cervical spine (neck area). Drs all say it's normal as we age, but yours is more than that. My osteopath is in his 40's and said he already has some degeneration.

I aged it faster when I fell from the reaction and smashed/twisted my head. Have you experienced any physical event that could have aggravated it? Has your Dr shown you the MRI results? They look for any pressure on the spinal cord. If physical therapy and the like are not effective, in bad enough cases, there can be procedures replace a bad disc for some patients. This is an alternative to fusion.

Dr said the discs can repair the desiccation to some extent with good hydration and that it does its freshening while we are horizontal during sleep. Since there are no blood vessels in the discs they get full and bouncy only via the water that is retained.

[Grendall in reply to EPguy]

hi EPguy,

Thank you for your reply. I am just praying my meds keep me balanced until I see the specialist, as I have stated to the other replies, i recently moved home and believe I have lost out on my referral, therefore have an appointment with new GP on Monday and hopefully he can refer me again it’s just that I will have to wait another 4/5 months now…. Hope all goes well with you x

[MCW22]

I used to be fit and healthy, dancing 2 or 3 times a week. Then a year after my PV diagnosis I suddenly had a spinal fracture. MRI also showed degenerative disc disease. After reading several articles online about connections between blood cancer and spinal fractures I asked my consultant if there was a connection. She said any bone marrow condition will weaken the bones.I am now up to fracture number 5 My shape has changed considerably and I hate the way I look and I can't walk more than a few steps without support . The pain is awful and constant. I take paracetamol and codeine, and for the last 2 years have had bisphosphonate infusions

What meds were you given that gave you relief from pain.

Carol

[Grendall in reply to MCW22]

hi Carol,

Thank you for taking time to reply. My GP managed to cut me through the referral system to get MRIs done and I have copies of these as well. After trying various different meds with no results, she then tried me on Gabapentin and Cocodamol, the Gapapentin being a nerve tablet and the combination of these two appeared to have worked for now, I would say from where I was ‘suicidal’ and I have never, ever felt like that in my life. I was just in so much pain and the the thought of not being able to play with my Grandchildren let alone try to lead any kind of life was just unbearable. Never in my life had I dropped to such a low level.

I still take these now 👍 as I am still waiting for my referral to the hospital to see what route they want to go down. Don’t get me wrong I can’t exercise anymore even if I wanted to, and with all the meds I am on at the minute I have gain a lot of weight but I can now go for walks which helps, plus it gets me outside…. I hope you get sorted and good luck x

[Janis12 in reply to MCW22]

Just out of interest, do you have osteoporosis, if so this would explain the multiple spinal fractures. I have had conflicting advice from my haemo doctors when I asked if the ET medication could effect bone density (I have low bone density), one told me yes, another said no and one said they did not know. I hope you are now recovering and are pain free.

[MCW22 in reply to Janis12]

After the first fracture I had a dexa scan and was told I had osteopenia. After the next fracture they decided to label me osteoporosis instead.

[Auggie17 in reply to MCW22]

I have osteopenia on the edge of osteoporosis but have not had any fractures. I do think it is related to ET meds.

[Cja1956]

Hi, Grendall, Your story really resonates with me. I was diagnosed with fibromyalgia in my early 30’s, arthritis in both my hips in my 40’s, ET Jak 2 at age 52, and MF in 2019 at age 63. I have also had kidney infections such as you described and in 2021, experienced such severe pain in my lower back and leg, I couldn’t walk for 9 days. None of the pain killers the doctors prescribed worked An MRI showed an inverted bulging disk. I really believe that since mpns are an inflammatory condition, as Hunter said, all of this is connected. Drinking a lot of water lubricates our joints and eating an anti-inflammatory diet also helps.

I wish you all the best.

Cindy

[givingITMybest]

While I cannot speak eloquently scientifically as Hunter does, I can tell you that I've always been finely tuned to my body. And since before diagnosis, about 8 months I've been plagued with issues including deterioration in my spine, great fatigue, gastrointestinal bleeding, and now aspergillosis fungus colonizing in my lungs. My dad is still living at 94 and my mom died at 85. My sister is quite healthy, but I am now the "sick one". So, while our individual doctors acknowledge our cancer they all treat the only the individual symptoms. Good luck ( think it time I do some therapy around the loss)

[Auggie17]

I currently see 7 different specialists which I believe is related to my ET/ Jak2 and no one gives me any guidance or answers.

I see a nephrologist, gastroenterologist, urologist, vascular specialist, cardiologist, hematologist, MPN specialist and now going to a NF1 specialist this week. I constantly have musculoskeletal issues that linger for months and sometimes happen when I am exercising very gingerly. It’s very frustrating because they don’t talk to each other and tell me they don’t know what is causing my ailments. I agree with Hunter to go the holistic intergrated/ functional medicine route if you can. Good luck and let us know!