After seeing the GP on Monday, we had a chat and I'm off all meds now. I saw the person at the hospital in February who said an appointment will come through for about 2 months time to see me again, so should have been April. The GP said to call to remind them, which I tried but kept getting an answering machine, which I've left messages on. The various meds I've been on since last March haven't done a thing except given me side affects like bad head aches etc. I'm still waiting for the hospital to make contact but nothing yet. Been off work since November due to this and now I'm taking back control and try to get back to some normality. I've ballooned in wait as couldn't go out, the meds seems to exacerbate my condition rather than help it. I seems to be going crazy here just losing the will to even get out of bed, nothing to do or look forward to as can't even go outside. Sorry for the rant but really fed up now. I've managed to attach pic of one hand but the other is exactly the same. Happens every day, several times a day. If the is a support group in or near Birmingham, I'd love to know where as most people although sound sympatric don't really understand what I'm talking about although they can see how bad it is.

16 Replies

  • I don't understand why you are off work.You seem to be very bored. My hands are like yours. Perhaps the hospital will answer you now that the crisis about the internet is over. You could ask the GP to write to your consultant.

  • I work with my hands as I'm a windscreen fitter, so working with knives and glass et. As I can't move my fingers at times and painful to bend at times, the GP said to stay off. That's why I'm off. I'm more than bored now, I'm losing the will here and that is no exaggeration. Feel like I'm sloping into a depression or something. I'm not blaming the hospital, but the appointment should have come through well before the crisis began.

  • Can you get a different job? There is no point getting depressed and giving up on yourself. You seem too bright for that.

  • Thank you for those kind words. Every time I was on new meds I thought great this will work and that'll be it, I'm fixed. But no it didn't work. I think this is the best way for me as it can't be any worse, can it? I've spoken to work and suggested taster days to see how my hands behave, so all being well I can go back into it soon ish.

  • I am very pleased by your reply. The sooner you go to work the better. Boredom is no good to anyone. It makes you sick. There is no cure for us but we can be helped. It is a complex situation with a lot of trial and error. Consider yourself lucky. Decades ago there was little research whereas now there is quite a lot though not enough yet.

  • If your hands look like that you definitely need to stop working where you come into contact with glass since if you get cut or get an ulcer on your fingertip you could take forever to heal or even lose you finger since your circulation is bad! I worked at a hospital and got a ulcer from having to wash my hands so much even after I wore gloves and was off work for 3 months healing and very painful👎 Sounds like you may need to see your regular doctor and maybe get on something for depression! I also did that for about 6 mos. until I could come to grips with my disease and then went from working at the hospital to working a a school with special needs children for 25 years until retirement! Hope everything will work out for you! Hang in there. You will get used to it all and make the right decisions! You need to stay on the doctors until you get results and by all means make sure you tell them how you are really dealing! Y the way my hands would look just like yours throughout the winter and when there was weather changes that were changing quite a bit! Good luck to you! Let us know how it goes since I really feel for you! How old are you?

  • Hiya Avtargill31,

    Boredom can make you feel like the world is closing in around you. I think you need to speak to your GP again and tell them how you're feeling, depression is another symptom and needs to be dealt with by the professionals. Please don't think you're alone, you're not and on this forum you will find people who help, offer advice and at times be a shoulder to lean on.

    Chase up your appt - let us know how you get on and don't give up!!

    C xx

  • Hi C, I did tell the GP, I said I'm losing the will to live and the drugs ain't working, as the song goes. The GP replied we'll take you off the meds as they aren't working and call the hospital yourself, here's the number. Don't get me wrong, it wasn't said nasty etc. Just feel helpless a the moment, hopefully if I can go back to work and get my mind active, that'll go a long way I think. I'm not used to sitting about so being force to make me sad. Never had anything wrong with me and I used to say, I might not have much but I've got my health, it was a MASSIVE shock when that started going haywire.

  • Aw - I think you really need to go back - is there another GP you can see? Do you have a good support network? If so, take someone with you for moral support.

    C xx

  • I have a partner but she was recently diagnosed with clots on both lungs so we're both going through the mill a bit.

  • I do feel for you I'm out of work. I was a teacher but found that going in and out of the playground and getting up and down from the floor (work with 4/5 year olds) so painful. Also I kept loosing my voice ended up going on methotrexate which isn't good working with young children because of infection. So I'm off work doing online courses until. Looking to change what I've done all my life Really hope that things get better for you and your partner


  • Thanks Sam, I think it's a case of slowly working through it. I keep thinking and sometime say "what ever next and things can't get any worse" but then it does, I'll have to change my sayings I think :-(

  • Sounds like our house ! We don't even tell people anymore because I'm sure they think we are making it up ! I was born on Friday the 13th so I guess I should be surprised. 😂

  • Oh no lol. Off for Fish & chips to cheer our selves up, bang goes the diet for yet another day :-))

  • One day at a time and the occasional treat is good for the soul 😅

    C xx

  • Hi - maybe, as your hands are so important, you could look into lines of work that are indoors in the warm and which allow you to wear gloves to protect you from cold and cuts and chemicals? I was thinking of the creative industries for example?

    You could even find something to do at home as a hobby initially - one that engages your mind and keeps your hands busy and active - and then look into jobs locally in this industry?

    Perhaps interior design and decorating for example? Good decorators are always needed and you could do a training course? Or upholstery or picture framing? Just a thought.

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