PV with increasing stiff and crunchy joints

[marieowens]

I was diagnosed wit PV in 2011 I am lucky enough to have a brilliant haematologist so I am now very stable .

The symptom that led to the discovery of my PV was stiff, crunchy and painful joints all over. This symptom has still not been explained and is getting worse. I have of course seen rhumatologists and other specialist and after numerous test for various artheritis types plus more nothing has been found. The crunching is worse in the morning and my whole spine with grind and clunk I feel like the Tin Man. Does any one else have this problem and have an explanation for it.

[Aime]

Hi Marie, I have PV diagnosed last year. Stiff, painful and crunchy describes my joints exactly. Everyone that starts creaking, gets painful, noisier and eventually needs treatment of some kind. Some have been put down to osteoarthritis, others to tendons, nerves, etc being compressed. I have 6 ops in the last 3 years and just about to face another 2 - one of osteoarthritis of the thumb and the other for tendon decompression in shoulder and I can feel the other shoulder getting sore and crunchy too. I had a MRI scan on Monday of back, hips and pelvis due to osteoarthritis in lower back and problems with hips!! As you say my whole spine crunches and grinds so do the rest of my joints - even where I didn't know I had joints! I spent last night up until about 1 a.m. with pain - going to doc on Monday for stronger painkillers. I have every sympathy for you. Kind regards Aime

[Borage]

Hi Marie, that sounds so painful.

Looking round the haematology clinic I see that a high proportion of people there have mobility aids.

I was diagnosed with ET after a referral to the rheumatologist for painful, stiff joints. Blood tests showed it was not arthritis. It all seems to be part of MPN, but there seems to be little interest in the symptoms.

Bloods stable, keep taking the tablets, come back in x months.

Is there anything that can be done to prevent the joint damage and loss of mobility?

(The old arthritis remedy of bee stings didn't help, they stung through my gloves several times when I was feeding them recently)

Best wishes, Borage

[Chrissie10]

Hi Marie - I too suffer with very creaking and cracking of joints. My neck cracks very loudly when putting my head on one side, i have had painful knee (especially when the weather is hot) and also lots of pain in the AC joint in shoulder. Consultant said there was a small amount of arthritis but doesnt really explain the amount of pain. Regularly having cortisone injections in shoulder to control the pain, which works when they get it in the right place. Best wishes Chrissie

[marieowens]

Thanks for the replies . My haematologist tells me it is not a symptom of PV but the only time my joints don't hurt is when my bloods are at a good level. I am only in my mid 40's and all the tests for arthritis have come back negative. It is interesting to hear that some of you also have unexplained joint problems.

[AshPember]

I had a ra test it came back negative, but my toes, knees, elbows, and shoulders crack and crunch. My back and fingers are really stiff and hurt not sure what's wrong. One doc told me to sit up straight.... like really I was there cuz I can't sit up straight.... wish I knew what was wrong

[Janeydot]

Hi guys did any of you ever find a solution to this problem? I’m only 26 and have been cracking and clicking all over since diagnosis! My haematologist also says it’s not PV but it only started as my bloods began to ramp up!