So Sorry, Mattcass

I'm so sorry for not being in touch since Tony told you all I made it on to the active transplant list and want to thank everyone who replied to Tony, My Rhuematoid Arthritis is running havok with me constant flare ups and everytime you think the pain can't get any worse it does and it drags you down, But the minute it eases off I'm away to the Gym or walking, the only treatment is stepping up my Steroids but if I do that I have to come off the list as they don't normally accept anyone over 20mgs a day they have accepted i stay on 25mgs because anything less and I am totally crippled and no p/killers work, Mattcass

15 Replies

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  • Lovely to hear from you Matt. So sorry to hear about the RA but glad you can make it for some exercise when it eases off for you. All the very best to you. Peege xx

  • Wishing you and Fran better days ahead Matt and hope you enjoy the not so painful days.

    Love and good wishes and stay strong. Xxxxx

  • Hi Mattcass, I'm so sorry to hear about the pain you are enduring as I know how all consuming it becomes.

    When I first started with what they said was RA, I can honestly say, the pain got so bad, I wanted to die, the intensity is indescribable.

    I don't want to look like I am advocating drugs but have you ever tried cannabis tea?

  • Cannibis cakes have been mentioned, But you would have thought Oramorph,MST,Tramadol,Lorazapam, and a sleeping tablet would work, The ammount off times I thought my Heart would burstmwith the Pain.Matt

  • It is shocking that those painkillers don't work on you. They are what my husband had when he had terminal cancer. After that he had a syringe driver. Would such a thing help you?

  • If medication like that isn't working, I would definitely give the tea a try. It's natural and you would still take a painkiller with it but, it would definitely relax the tenseness in your muscles that always come with the pain as it intensifies.

    You would sleep much better too. Nobody should have to tolerate pain on that scale Mattcass, it's inhumane.

    I've never had a space cake, I have had the tea and it is very nice due to the butter in it. You can also regulate the strength better, until you get used to how much you need to get relief. It's worth a try. xx

  • Great news you're on the active list but sorry to hear of the pain you're living with. Take care and keep us updated x

  • Lovely to hear from you but sorry about the RA - I know how you feel! Hope things improve soon.

  • Lovely to hear from you Matt, but sorry about the RA. I know how you feel.

  • Nice to see you Matt. Please don't apologise if you feel too ill to come in. It's far better to conserve your strength than come in here and risk feeling worse. It's such good news that you might be able to have the lung transplant. x

  • Sorry to hear your in a lot of pain Mattcass, but fingers crossed you get that transplant. Thank you for popping in to see us , take care x

  • Good luck with everything Matt x

  • Its good to hear from you MC but not so good to hear your suffering so much with the pain from the RA. I consider myself very fortunate that my RA (anti jo 1-pos) doesn't give me any pain and is for now at least confined to my lungs. Saying that it keeps eating away and is leaving me with less and less breath. I'm having to counteract this by using higher oxygen and doing less. My RA consultant who is new to me is tweeking the pills by lowering my pred from 15mg to 12.5 and raising my Mycophenolate from 2grams to 2.5 grams. Hopefully he knows what he's doing but I get the feeling my breathing will worsen and I'll be back on 15mg soon.

    With luck we'll both be making our way up 'Arthurs Seat' soon to give our new lungs a good clear out. Can't wait to see the view from up there and I know its a long shot but anythings possible if we can hang in there and keep believing eh' MC :) . Tony

    England v Scotland soon in the footy and you must be favorites the way our lot are performing. I'm sure we both give 2 fingers up to FIFA and will watch our teams wear the poppy with pride on the 11th.

    Say hello to Fran from the Dall boy down in Malvern and thank her for keeping my Scottish pal going, it can't be easy for her. I'm going by my own experience with my Sharon and what she has to do for me which is far more than I would like these day's.

    Tony

  • Hi Tony, Thanks for keepingg everyone updated, The last couple of weeks I have spoken to Fran and the Doc about me increasing my Steriod level knowing I would have to come off the list that''s how low it drags you down, Fran says it's my decision and knows how hard it for me to think like that, And then I think what we have been through and where we are going up Artur's Seat or The Malverns, I have all the equipment to travel and stay out overnight in face several night so a wee break will do us good as you say Fran and Sharon have been unbeleivable the last 4 years we even go the gym together she is into tennis and badmington and 1to1 coaching I think we have the two best in Fran and Sharon say Hi from us will keep in touch Tony, How's Doz'y, MC.

  • Hi MC,

    Dozy's in hibernation as usual being a dormouse and doesn't cope well with the winter months :) . Like Fran I love playing tennis to and used to play club league tennis for around 30 years. This all ground to a holt 6 years ago after my initial 4 month hospital vacation when this disease first showed its ugly head. After that my lungs were wrecked but at my best I did make a brief come back with my oxygen pack on my back :) .

    I saw Arthurs Seat on country file last week, they were doing a charity ramble around it for children in need. I reckon we'll make it to the top some day and raise some cash for the BLF while were at it. Try to remain positive MC even though your pain is bringing you down we could still end this thing with on a happy note.

    Is Fran a master of the slice or top spin on the tennis court? , I've noticed you have some pretty good players up in Scotland :)

    Tony

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