Bone pain. Bakers cysts

[MissLesley13]

Hi I have recently discovered that i have 2 quite large bakers cysts behind my knee. I have ever since my journey with E.T had really bad bone pain. I am wondering what other people's bone pain etc has been like. I am getting fed up with my hands , feet hurting all the time that I think it is the norm. I think this is why I never knew the cysts were there as I normally just shrug off bone pain . Has anyone else felt as rotten at times as me. Would appreciate someone recognising something like this so I know I am not alone . Thanks

[Cat1001954]

I suffer with bone often not nice

[MissLesley13 in reply to Cat1001954]

No it is so uncomfortable

[Spanelmad]

Definitely can agree bone pain is the worst always on my right lower leg!!Have developed a "cyst" on top of my right knee no-one has currently worked out what it is!! More xrays to come.

[MissLesley13 in reply to Spanelmad]

I was at my haematology appointment today and I said how sore I was. They had a look and also noticed some swelling. They measured size. This was under my knee and then I was sent for a scan. It is not a clot but again they are unsure what it is either.

[Spanelmad in reply to MissLesley13]

If it is a bakers cyst they can drain them.Mine could be a RA node but it's a unusual place for it on top of the knee cap.

[MissLesley13 in reply to Spanelmad]

I hope they do and yes that is unusual .

[SuET2017]

hi, yes, bone pain, mostly along my shins though I sometimes get in other bones ( hands and feet, wrists, currently left ankle bone). It comes and goes and it was one of the symptoms that I first went to the GP with before diagnosis. For me it feels like shin-splints, which I had experienced when I was younger and doing a lot of sport. I haven’t managed to identify if anything particular sets it off. I don’t take pain medication for it as I can manage it, I.e. it’s not generally painful enough for me to have to take pain medication and I tend to keep myself busy to distract from it, but it can be wearing (that scrunch my face up type of thing - not good for wrinkles ). So yes, I understand what you mean. It’s very very irritating.

I also get some sort of ‘cyst’, small hard lumps, popping up hear and there. I hadn’t heard of baker cysts, I’m about to check it out. GP had no idea what they are?

[MissLesley13 in reply to SuET2017]

Thanks for this. I am so happy I can talk to other people who understand what it is like. It is so irritating and limits a lot. Take care and thanks again x

[Pinkinwiltshire]

Yes, I suffer with bone pain at night. I've also just had a ruptured bakers cyst. My leg swelled like a balloon and resulted in an emergency hospital trip as my GP thought I had a DVT. It's still draining and it ruptured Christmas week. Good luck with yours.

[Spanelmad in reply to Pinkinwiltshire]

Sounds incredibly painful

[Pinkinwiltshire in reply to Spanelmad]

It was, and really weird. It's nearly better now though, thank goodness.

[MissLesley13 in reply to Pinkinwiltshire]

Wow sounds so sore and thanks for letting me know . I feel better knowing someone has hd the same. Even though it is dreadful what you are going through x

[jointpain]

My wife has MF, yet I have the lump behind my left knee! This is a classic baker's cyst, it gets bigger, and more restrictive. I understand there is supposed to be around three cc of synovial fluid in a knee, when at it's worst I have drained 12 cc of synovial fluid from it, but these days I'll drain 2 cc every few days using a hypodermic needle and syringe, this has been going on for five years without it getting worse. I think it moved to the back after I had an atheroscopy when it was on the inner side of my knee about twenty years ago. Doctors are not interested in draining them! Good luck with it.

[TTA_]

Hi!Bone pain is also part of my symptoms. Expecially pain in the shins, but when I am exhausted the bone pain becomes more generalised. When I overexert, I experience both bone pain and weakness in my body. For me, what works to calm down the pain is to have enough rest.

I have hereditary thrombocytosis, and bone pain has been part of my symptoms since I was a child. So it was for my dad, who also had hereditary thrombocytosis.

My hematologist tried to say that bone pain of the intensity I feel is not a common symptom in essential/hereditary thrombocytosis (implying it is only in myelofibrosis), yet I have heard people having this issue who have ET/HT and a bone marrow looking normal, like it is in my case, so other factors are at play.

One of my suspicions is that, as the mutations causing us our illness are also linked to generating inflammation, that could explain the bone pain.

I hope you discover something that works for you in managing the bone pain.

[MissLesley13 in reply to TTA_]

Thank you so much. I honestly can't say how nice it is to have someone recognise the bone pain. I feel so limited now. I keep getting people telling me it will pass and it can't be that bad. I have had something flare up quite a few times and I am looking for a trigger. I also think you are right on the link between diseases. Thank you again for taking the time to reply and making me feel better

[Exeter21]

I found changing my foods completely helped mine. No dairy no red meat & Mediterranean diet as recommended by MPN. It’s helped lots as reduces inflammation. I am on Peg Interferon which has been excellent. I walk daily as the excercises are important to keep mobile. But definitely think food makes a big difference . 👌

[Tipsy2023]

Morning I also have suffered bone pain for years . Feet Hands then as I saw my platelets rise in long bones which were sore to touch even washing in the shower . I have had previous multi level back pain and told severe degenerative changes. They told spinal stenosis causing leg pains . But these greatly improved when I started clopidigrel. I had taken anti inflammatory Diclofenac on prescription for years which helped but is controversial and I had to stop upon diagnosis of Et .

I have had 4 operations on my feet large toe joints removed and plate put in the reason they felt was huge osteophytes on my joints also Hebedens nodes on hands elbows even skull … I was at the time undiagnosed ET Jak 2 positive . The nodules can be associated with osteoarthritis but also inflammatory arthritis …it does feel rotten and the fact it often comes and goes does confound most medics .

I do think it relates to MPNs

You certainly aren’t alone . But days when hands and feet feel so sore then it wanders around your body reaking havoc then seems to get better until the next time . L

[MissLesley13 in reply to Tipsy2023]

Wow. You really have had a time of it as well. Thank you for taking your time to reply. I really appreciate it. I am so thankful some other people are helping me with their stories. It is not nice when you are feeling sore and useless sometimes. Thanks again

[Tipsy2023]

I just wondered whether you tried use ice pack behind the knee ? For the Bakers cyst I use I wine bottle chiller the kind you slip over the bottle… I cut carefully between segment roll it with cool bits out and put it under the knee … cover with something thin so not direct on skin .. for about 15 minuits does help.L obviously other ice packs will work !

[MissLesley13 in reply to Tipsy2023]

That's a great idea thanks. I do have some ice packs in freezer. I will give it a try thank you

[shorthorn]

Hi, I am 65 yr male UK , diagnosed with PV jak2 positive 5 years ago. been on Ruxollitinib for 4 yrs with some manageable side effects, including mouth ulcers ,weight gain and fatigue, I suffer from bone pain mainly in my hands and legs, 2yrs ago diagnosed with a bakers cyst on back of my knee, and then it ruptured, and i thought I had a high pain threshold until that happened, it has since comeback but size varies daily, My consultant says they try not to drain in case of infection. I have just come home from hospital after a week in for surgery on my arm to remove an internal abscess that became infected.

Whether all these issues and more are related to my MPN or not, they are worrying and I am sorry to hear of lots of stories on this forum that are probably related to their illness, stay safe and thankyou for all the great information on here and letting us know we are not alone.

[MissLesley13 in reply to shorthorn]

That is so interesting. I do think that a lot of things pop in after diagnosis. I hope your surgery had went OK for your abscess? I too am grateful for the help on this forum. It has really helped when you are just wanting a I know what you mean from someone. Thanks for your reply and I am shocked when you said how painful it is . I am a bit worried as I have 2 bakers cysts. I am at least prepared for that when it happens . Thank you again and I hope you are feeling better soon also

[linphy]

I have ET, I struggle with bone pain in my legs. I have osteoarthritis in my left knee and often suffer from Baker Cysts. I have struggled for years

[MissLesley13 in reply to linphy]

This sounds so painful. How do you manage with the pain ? I had to go back to drs as I couldn't even bend my knee. She said was Inflammation. I'm just wondering in your case, if you don't mind me asking did the cysts ever go down in size or have you just got used to them being there ?

[linphy in reply to MissLesley13]

I take paracetamol. It doesn't always help. I have had cortisone injections the last 2 years, every 3 months. The last one I had didn't help at all. I've done a self referral for physio (suggested by my dr)Due to start 12th March. The cysts does settle a little then flare up again. My lift knee looks deformed.

It's frustrating I can't kneel down. With spring coming, i can't kneel to garden. What pain relief do you take

[MissLesley13 in reply to linphy]

I was prescribed codeine. I said that the paracetamol wasn't touching the pain at all. I also can't kneel either. This just feels like a heavy pulling lump when I go to.bend my legs. I was also looking forward to being in the garden also . I hope we both get some ease soon .