Hi @CathyP
How are you doing? Did the steroid injections help?
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I’m currently reading a lot about the condition and am drawing up a list of questions to ask the doctors and nurses thanks to the website. At the moment I’d like to know what level of risk I’m classified at. I like to think low but I’m a natural optimist!
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Hi @Hughbie
You’re doing all the right things. There is actually a prognostic risk score you can use yourself -provided you have been given all the information by your doctors. If you want to do this, here’s a link.
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Hi Chrissy sorry for delay I am not online much anymore. My symptoms are much worse (increased fatigue, blood spots, night sweats, lymph nodes up in throat, boiling hot and freezing cold flu like symptoms) but my bloods in October were stable. My three month blood check is due soon with Myeloid Clinic appointment on 5th February. I will be interested to see the blood test results given that the inflammation in my body is now all consuming. I can’t walk or use my hands (my husband is typing this), I can’t eat very much at all due to stomach inflammation. Before Christmas I had synovial fluid drained from my left knee (50 mls!) which made a huge difference to the pain and I had a steroid injection in my bum. The steroid injection has made no difference to the other joints (right knee, both ankles, elbows, neck, fingers, thumbs, wrists, back of hands, toes and back of feet. Still just on paracetamol as anything else aggravates the stomach. Another appointment tomorrow at the hospital in Oxford to drain fluid from right knee so hopeful after that I can walk. Have moved bed downstairs as we have a downstairs bathroom. Husband is doing everything for me but hopefully if draining the fluid makes a difference to all the joints I can get my independence back a little and just have that done regularly to keep it at bay. Myeloid clinic at last consultation had no idea whether this is caused by leukaemic synovitis or an autoimmune reaction but the very knowledgeable rheumatologist seemed to think they would be able to tell that by test the fluid drained off so he is going to liaise with Myeloid clinic about this. Rheumatology department also did x rays before Christmas and discovered osteoarthritis in quite a few of my joints. Various drugs have been offered and then dismissed due to the side effects including Methotrexate, Gabapetin, I probably haven’t spelled those right! I think some of the drugs interefere with the blood cells, I’m not really sure but I’m guessing some of you have more knowledge than I do.
Thanks for checking up on me. I am very down as being in constant pain is the biggest challenge I’ve ever faced but I have to keep believing that someone out there will be able to offer me something that will stop or at least dull the pain one way of the other. My GP hasn’t been much help and has dismissed the effectiveness of pain relief patches and Tens machin or similar so not sure whether to bypass GP and try and get help elsewhere as I’m willing to try anything to be honest.
I hope all of you guys are as well and comfortable as you can be and that you all managed to have a good Christmas xx
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Oh @CathyP I just do not know what to say, you really are going through it, it must be really challenging for you and your husband. I cannot imagine my husband typing the post above for me.
I know that continuous pain really drags me down physically and emotionally. Personally I find a diary of my symptoms stressing my pain levels and debilitation works best for me and of course being pleasantly assertive and asking them what they can do to help you. In your case perhaps your husband could say how it really is for both of you too.
So thinking of you loads and sending you loving vibes and please do use the Blood Cancer UK support line on 0808 2080 888m, the nurses are so helpful and lovely and keep posting when you are able too xx
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Dear @CathyP So sorry to read this & everything you’re going through. I really hope you can feel easier soon. Much love & best wishes to you 
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Hi @CathyP
I’m so so sorry to hear how much pain you are in and how you must be struggling. Just hoping that some answers are found soon and that you can get some relief. Could you ask either your rheumatologist or haematologist if they have had or could organise a multidisciplinary team meeting (MDT) to discuss ALL your symptoms as you seem to have multiple areas that need looking at? Such a shame your GP isn’t being more helpful but frankly, other than stronger pain killers which will undoubtedly cause more stomach irritation, there’s not a lot they can offer?
We are all thinking of you.
Xx
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Hello @CathyP
So sorry to read about how you are feeling and the pain you are in. We can imagine this is a difficult time for you.
I can see others have replied with supportive messages and advice.
I just wanted to check in with you and ask if you have contacted your haematology team? As we would strongly advise getting in touch with them to keep them updated on how you are doing so that they can support you as best they can.
Warm wishes,
Emma (Support services nurse)
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