Desperate

[TJme]

I feel like just ending it all .The pain is so bad the morphine barely touches it .Have to go to the docs for blood test today and to hospital to see rheumy tomorrow ,still don't know whats happening with that as the receptionist said that a 4pm appointment is just for consultation ,what about the infusion ????Can't carry on like this in tears all of the time can barely walk because of the pain in my feet. I'm just feeling sorry for myself ....

[lynbw]

Aw please don't give up , you can get through this ' i know what the pain is like . go for you'r consultation yu will be surprised at what this will lead to , what do you suffer from altogether? let me know , talking about it can help and you never know perhaps i could answer any questions you might have to ask . take heart there are people who can help . love and best wishes to you lyn

[Anteater]

Hi TJme, dont despair - I have not got pain in my feet but last year I had a really bad ulcer on my index finger which started in September and had it for 6 months or more. I just moved then and enrolled with a new GP which was so useless I could have cried. he put me on Antibiotics which didnt help and I asked for really strong painkillers but he said I had Tramadol for Pain and would not give me anything else - I was in complete agony ... I didnt sleep from the pain and my finger pulsed 24/7. In the end I rang the Specialist nurse you told me to ask the dr for Morphine but still he would not prescribe. Thats it I told my husband Im going up that hospital and ask them to take my finger off - could not stand the pain any longer - in the end I went in for Iloprost - more antibiotics stronger painkillers, I had an mRI and found out that the bone in the tip of my index finger had gone , so my finger is getting shorter - lucky for me the bone did not have an infection. !!! I wonder ..... But what I am saying is that I was in complete agony so you are not alone - dont give up xxx good luck with your appointment xx

[SheriFrost]

Honey... You win or the disease does. I chose me. Know you will choose you too. Hang in there. Lots of folks are pulling for you.

[Hidden]

Please don't ever give up. Try and stay strong and don't let this condition win. We are all rooting for you on this web site!!! Maybe ask your gp or consultant for you to be referred to the pain management team. I do hope that you make some progress. Wishing you a peaceful and painfree Christmas. Nuala

[cookie74]

dear TJme,, i know exactly how u are feeling,, i have just had 3 month of pure pain, morphine didnt do much for me either, so i was on morphine and pregabalin ( for nereve pain) 8 weeks was the worse no sleep, went to gp's 4 times and the last hope i had , i broke down in the GP'S surgery got a new consultant, was admitted stright to hozzie for ilprost infusion, ive had 1 finger amputated 3 year ago, now i have 3 ulcers which are glad to say feeling a tad better,, the finger i got removed was nasty,, 2 years they left me,, no medication,,no infusions, nothing was mentioned about my finger

,, know its hard and painfull, sending warm hugz n keep safe

[zenabb]

See your doctors and insist on help. I used to be given all sorts that did nothing until it was decided that the pain was neurological. So, I was given Amitriptiline 10 mg. It is usually given in larger dose for depression but they discovered that it helps with neurological pain. It does but not completely. It makes it bearable. I was told that I could take a lager dose if I want but it would make me sleepy, so I don't.

NEVER GIVE UP. I KNOW THE FEELING WHEN YOU THINK THAT YOU ARE OUT OF CONTROL. There is always something.

I SUGGEST THAT YOU GIVE YOURSELF A BUNCH OF FLOWERS. You deserve it.

As for your husband, he must feel helpless towards you.

We feel for you.

Have a better Christmas and even better New Year.

[cherylann]

Get your doctor to send you to a pain specialist. Whatever you do, don't give up. Change doctors and do whatever you need to do to control your disease, don't let it control you. Best wishes for better times.

[Suze932]

I really feel for you but don't give up, we are all behind you, supporting you with hugs and good wishes. I have had extremely painful ulcers/calcinosis on my fingers for two and a half years and until recently no-one had suggested iloprost but I am now due to go in for the infusion in February, prior to which the ulcers are being debrided.

I know about the foot pain also. Took the PISCES orthopaedic shoe insert trial through the Royal Free (they are still looking for people to join the clinical trial) and my foot pain is much improved.

Hang on in there, the Sclerodermians are with you all the way.

Best wishes for a swift reduction in plain levels.

[SheriFrost]

I'm checking on you. Do you feel better?

[TJme in reply to SheriFrost]

Hi Sheri ,

Yes thankyou I feel heaps better .I spent Christmas in Hospital having Infusions , I finally got to see my rheumy and he said that it was one of the worst cases of Raynauds he had seen and if it had been left any longer I would have been in danger of losing my fingers, the infusions were for 12 hours a day over five days , I could actually see my hands shrinking back to their normal size after just four days .Came home on the 27th and am back to my old self again .Thanks for your support

[lifeforce]

I have had scleroderma for 11 years, the best gift I gave to myself after a complete breakdown was zoloft, it helps with the depression of not being who you used to be, helps with social anxiety, and if you take it at bedtime will make you a little drowsy. Good Luck!!!