Hello, all! I had to write to you because I’m desperate for answers. I was in the emergency room last Wednesday for what I thought was just a kidney infection. The pain in my lower back was unbearable and I couldn’t even stand or walk. They did all kinds of tests and confirmed my suspicions and sent me home with antibiotics. But it didn’t end there. My kidney infection seems to have cleared up but ever since, I’ve been in excruciating pain in my right leg. Regular Tylenol and ibuprofen didn’t work so my primary doctor put me on Tramadol, which only dulls the pain for a few hours. My platelets were at 960,000 at the hospital. My hematologist said she’ll fit me in this week, but I’m really scared that I’ve reached another level in my cancer. I’ve googled this but there isn’t much information on controlling bone pain. If anyone has any advice, it would be most welcome.
Sorry for my rant.
Cindy
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Cja1956
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Hi Cindy , , sorry to read of your problems , , glad the kidney infection is cleared, it can be very uncomfortable when it drags on. Regarding your leg pain are you sure it's in the bone, the reason I ask is that your ET moved on to MF in the last couple of years and it seems a bit soon to have reached that other level youre worried about. As we all know our MPNS affect us all differently so I wouldn't rule it out though I'm unsure how they test for it as opposed to ruling other causes out. In my own experience I had very little bone pains even at Intermediate Stage 2 after 9/10 years. And then it was in my lower back region. Maybe I was just fortunate or maybe the Ruxolitinib helped.
Hi , Chris. I’m sure it’s bone pain only because I’ve never experienced anything like this. It’s my entire leg and seems like very deep pain. Walking aggravates it but it still hurts laying down. I was diagnosed with intermediate 1 mf in 2019 but my hematologist wasn’t sure how long I had it since she was my second doctor and I had been diagnosed with Et in 2008. Hopefully I will get to the bottom of this when I see her this week.
Well at Inter 1 that would indicate that maybe you had MF a time before it was diagnosed though in younger folk I believe it can get a grip much faster. I was informed that it mainly affects the elderly and is often a slow burner so generally they can live longer with it and may well pass from some other cause. From how you describe unfortunately it does sound like it's bone related.
I hope you get resolution as having recent episodes of varying degrees of leg pain myself I know how hard it is to deal with , you can't get any respite in any position not even resting with your legs up.
That’s exactly the way I feel. No matter what position I’m in it doesn’t matter. The pain is intense. I know you’ve been through a lot yourself. Thank you for your support. You are very kind.
Hi Cindy, I'm so sorry you are in so much pain - it makes it impossible to function normally doesn't it? I'm afraid I don't have any useful advice to offer as I'm also struggling with leg pain, mostly around my knees, although it definitely sounds like yours is more severe. I have had a similar experience with Tramadol, which just doesn't seem as powerful as it ought to be. As it is confined to one leg, is there a chance it could be sciatica?I hope your haematologist can offer you some reassurance. Best wishes, Jennie
I am also sorry to hear that you are suffering w/ pain...
Like Chris, it sounds to me like something else might be the cause... But I am no medical expert of course, hence... they are the people to speak with of naturally...
However, I do suffer from bad back pain periodically, which I know is related to my MPN, and which on a previous occasion had also caused another Stroke-like event, which I mentioned not all that long ago...
It was in my left side, and primarily my left leg. Like you Cindy, I also suffer from a very high Platelet regime, and also Von Willebrands Syndrome (VWS), [which makes my Platelets even stickier], and potentially causing blockages everywhere etc...
The longest artery we all have, is in our legs... and I am just a tad curious, if something along these lines might not be the culprit... (?) Might also have nothing at all to do w/ any of it... but just a thought on my part...
Whatever it is, I do hope that you shall rectify & relieve yourself of this pain ASAP!
Thanks so much, Steve. It’s 3:30 in the morning right now and I’m praying that my hematologist can fit me in today so I can find out the cause and make the pain go away. I will keep you updated.Take care,
I am so sorry to learn that you are , (of course), sleep deprived as well...
Cindy, I really hope you have it all sorted out shortly...
I find Endone helps my pain best, along w/ 2-3 Panadeine Forte...They only help me for a while, but at least I can then snatch tid-bits of respite... & that is so important...
Thanks again, Steve, for your support. It means so much to me. I finally talked with my doctor’s nurse this morning and She is going to fit me in tomorrow. Thank you for your suggestions. I will keep them in mind.
Cja, my wife was prescribed fentanyl for leg pain without success. Radiation therapy was performed on both legs resulting in pain resolution. Subsequent radiation therapy was done on both arms, shoulders, neck and back. Radiation therapy may last months or years. Because of the low dose used a second round is possible should bone pain return. Maintenance oxycodone and Tylenol is used every day to control underlying pain.
Talk with your doctor about the use of Strontium 89.Strontium chloride Sr 89 is used to help relieve the bone pain that may occur with certain kinds of cancer. The radioactive strontium is taken up in the bone cancer area and gives off radiation that helps provide relief of pain.1 Feb 2021
Hope your hematologist can address the source of your pain to bring you relief and peace of mind. A few years ago I had an UTI that was accompanied by mild pain in my back. After my UTI was cleared by a course of antibiotics, the mild back pain persisted and I started feeling aches in various joints/muscles of my body. I remembered reading joint/muscle aches were potential side effects and attributed the pain to the pharmaceuticals and the inflammatory process in my body. The aches eventually subsided after a couple of weeks. I hope what you are feeling is also due to the side effects of the antibiotics and will eventually resolve with time.
I also asked my ob/gyn to not prescribe Ciprofloxacin for me because of the slight risk of tendinitis/ruptured tendon, which I was not willing to chance, as a runner. Peripheral neuropathy is another possible side effect, so while helpful in clearing UTIs, antibiotics can also do harm to our bodies.
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