I learn something new everyday

Hi folks. Its 7 in the morning and been awake most of the night, just restless sleeping. After seeing an arthritis hospital doctor back in November about my Raynaud's, an appointment came through to see an physiotherapist for yesterday, although the doctor said he'll see me towards the end of January to assess the medication he put me on. That appointment hasn't come through yet. I went to see the physio nurse who couldn't understand why I was there as she didn't have many notes from my file. I explained what the history was, which wasn't that much as this only came on last year, she hunted for the notes and said they weren't on the system yet as they haven't been checked by the doctor who saw me back in November. I thought that was rather slow, especially as I was now due to see him again. I was given a hot wax therapy for my joints and the nurse asked about my skin around the finger joints and knuckles on both hands as both look 'clubbed' and skin discolouring. I explained that the doctor saw this and said there is nothing to worry about. She said to tell him again next time I saw him as the nurse wasn't comfortable seeing it without a cause of action to try and fix it. She said to keep warm etc. I told her that my fingers have been going white in the shower which is very warm. She told me that it's not cold that affects it but a temperature change, so I was thinking stay out of the cold, but seems any change from cold to warm, warm to cold with trigger an attack. Has anyone else heard this. As I can't confirm with the doc as no appointment, a review of meds was suppose to take place, now the nurse has said keep taking until you see the doc but the drugs aren't working. #confused.com

9 Replies

  • I get that too...Raynaud's was my dignosis. Doc pit me on Nifedipine, baby aspirin, and use Nitroglycerine cream 3 times a day. It has helped me. Good luck.

  • Thank you, just plodding along and see what happens next lol

  • Hi

    Yes I understand and have experienced that changes in temperature as well as anxiety can trigger an attack. I would suggest you contact the rheumatologist and explain that you are expecting an appointment and that you have some ongoing concerns to discuss with the doctor. That may expedite an appointment. I had a couple cancelled recently, one after I had arrived at the clinic but when I rang and said I was experience additional symptoms an appointment was sent. Worth trying, although I know the NHS is pushed.

  • Yes....mine go purple in the shower...and my toes same.....I can be sitting in the livingroom and have a blanket around me while hubby is roasting with window open because it is too hot.....but I can also be sweating after any exertion but feet and hands are still freezing.

  • Thought It was just me, strange isn't it?

  • Am constantly in wonder at my weird coloured hands ...purple/white/sometimes even blackish .....so strange!

  • Could you let me know if you have or get any other symptoms as what you are describing is near enough the same as me. Can I ask how long you've had this and how how old you are etc.? I'm 44 and mine came on last feb, out of the blue with no warnings.

  • I have been unwell 3years now....started after my husband nearly died with full organ failure due to too many pills on prescription ...not docs fault but the interaction between the pills that no one could have predicted...he is much better now after modification and elimination of meds...but the strain of his illness may be the trigger to my systemic sclerosis.

    My symptoms are-lung damage of :COPD,bronchiecstasis and lung fibrosis. So this causes breathlessness and exhaustion. I also have secondary Raynauds...brought on by Ssc. Not had it before my illness. I have swollen fingers and toes and aches and pains throughout my body. I have been in hospital with circulation problem to my left hand ...my fingertips were bursting and fingers were blackening..so had to get infusions to open the vessels to allow the blood flow to improve and possible loss of fingers was avoided. I get numbness in my hands occasionally...I have to take Omeprazole..heartburn tabs. every day due to unrelenting burning in my gullet....my appetite is affected too....if I eat anything and try to swallow it is painful so puts me off eating too much...have lost two dress sizes in a year. I also have spinal problems...cat scan shows osteoarthritis and a bend in my spine...I have three fractures of my vertebrae showing too...I get constant pain from my back but can't take pain killers or ibuprofen due to stomach problems. I need to take blood thinner...clopidogrel...for circulation and I have to take Mycophenolate twice a day..for the lung damage to stop more damage occurring....I can't take omeprazole at the same time as the mycoph. as it reduces the effect so need to wait a few hours in between before taking it for heartburn. I have to take calcium tabs too-Ii also take carbocistene for mucus...very gluey sticky stuff that I need to cough up from the damaged lungs so have a cough that a 40 a day navvy would envy! I don't smoke thank goodness! ...I was taken off steroids because they were damaging to me. I have had two bouts of pneumonia so had to get the pneumonia jag this year. I also am disabled from osteoarthritis in my knees and hip and ankle ...now my spine recently. I also have sciatica and numbness in my feet ...think this is from spine damage. So this is about it with my symptoms.......hope it helps you in some way! best wishes....Marilyn xx

  • Forgot to say my age...I am 66 years young!