New to all of this,,

Hi all,,

I'm new to all of this was diagnosed nearly 4 years ago with scleroderma and Raynaud's but in the last 9 months my symptoms have got worse hands turning purple/blue or like a corpse and very very painfully numb my fingers have started to curl when having a attack. Feet turning white and numb with painful pins and needles, chest pains/ tightness, really bad fatigue like having blackouts and not knowing about it till afterwards, troubling swallowing and keeping things down. Last September I was diagnosed with Systemic Sclerosis I`ve had loads of tests done on my heart which showed that part of it isn't working, Lungs and Kidneys are ok, I`m going in for infusion treatment in 3 weeks time along with starting 4 new medications, There is also talk of starting a form of Chemo has anyone else tried this??

All of this is quite overwhelming and scary how quick this condition can take hold and struggling to deal with the whole thing esp my symptoms my mood is up and down emotional 1 minute then angry at myself because I cant control my own body. I`m still trying to work 11 - 16 hours per week to try and keep my mind active.

If anyone can give any tips etc. I would be grateful..

Thanks

Kelsey

6 Replies

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  • Hi Kel87

    I can totally understand where you are at with all the different things that are now happening. It's scary especially if you don't have the right support or knowledge around you. But coming on here was a great thing to do because we are all in the same boat. If not experiencing different things. I to have Raynauds, Vitiligo, Thalassaemia and Systemic sclerosis. I was diagnosed early last year with the sclerosis and thought my world was over. I have diffuse so the progression has been rapid, from having nothing wrong to everything wrong. But I found getting the right drs and specialists in place was what I needed. I also have a great sister who has made it her mission to know everything so she can support me. I had 6 pulses of chemotherapy which has worked but the RF decided I needed 6 more pulses. The treatment for me wasn't as bad as I thought it would be. Some hair loss and minor sickness. I'm having another round of Iloprost treatment in a couple of weeks after having my Portacath put in. My skin is too thick now to have Cannulas or Picc lines. But it's all about having the right treatment that makes you comfortable. The RF are excellent at making sure their patients are well advised and have what ever they need to be ok. But don't be afraid or ever feel alone because you have us all and your drs and specialists should be able to help with whatever pain your feeling.

    If you ever need to talk or have a moan we are all here. Xx

  • Hey Cole57,

    Thanks so much for getting in touch, this site is amazing I found for support info etc.. and I`m starting to feel less alone and know people actually understand what's going on inside my head a little which is a comfort. Wow super lucky chemo wise I hope to be as lucky when I start mine. Yeah one of the drs. spoke about putting a Portacath in. The Freeman where I am now have been amazing compared to the other hospital I was with which is great.

    Thanks I appreciate it.

    Kx

  • Hi there, I'm sorry to hear you having such a bad time. I git really poorly about 4 years ago, nearly lost all my mobility, I have Scerledema. ,polymytosis, raynauds. I couldn't hardly move my arms , hardly stand, had ulcers on my fingers, and in terrible pain, and so down. I was on 13 steroids a day and some immune suppressants but nothing was working, as the disease was in such a aggressive state my specialist said we should try chemo tablets to try dampen down my immune system, I have to say by this time I would have taken anything. I was on steroids and chemo for 7 months, obviously there are side effects but eventual it dampened down although I had a lot of muscle damage . I also went through the change due to chemo and it caused me to have osterperosis , apparently I should have been on Androlic ( calcium ) tablets and vitamin d ( this helps the body to absorb) the calcium from the beginning because of the high doses, so if you go this way please ask about these two supplements, I never knew,and I wasn't given them. Hopefully once the disease is stabilised you will proberly be kept on steroids and immune tablets but a lot lower doses , regular blood tests, scans etc to monitor you. I have had 4 lots of iloprost infusions, they are for 5 days and 6 hours a day, usually I have mine September time before extra cold weather, they haven't stopped the raynaud attacks but touch wood I've not had ulcerated fingers since 😊. I'm sorry if I've waffled on but I really do understand how you feel, it's scary stuff. I am not longer able to work , I've always worked full time, had a fab social life but hay ho, I'm here and have learned to live differently, rest when you need to as it makes it worse when you push yourself to hard. The best feeling ever was being able to drive again ( be it an automatic) , I had to sell my Mazda and was gutted lol, first decent car I had ever owned lol. There is light at the end of the tunnel , try to be posative , and remember you are not alone, we are always here. Good luck 👍

  • Hey

    Thanks so much for replying, I`m sorry it sounds like you have had a tough ride of it. Ill definalty keep those 2 supplements in mind when the time comes. It`s a total new world to me and have felt very alone not knowing what's available etc. for treatment.

    I mean when I go to the hospital they give me a good MOT if you like lol to check everything's working the way it should or if I`m needing something else which is great I know I`m in good hands but it doesn't stop the mind wandering tho, I`m unable to drive due to my hip condition which I`m gutted about I would love to drive. I`m learning to adjust life eating etc. as I`m getting so tired very easily.

    Thanks again I now know theres people who understand this mad world of a terrible condition.

    Kx

  • We are alway here, X. Could you maybe try a mobility car that has steering wheel gears, I've seen them. Losing your independence is so hard , makes me feel normal again driving in my little car with the music on 😎

  • Hey unfortunley haven't been able to learn to drive ever :( I love the thought of a summers day music on windows down lol but that's a dream.. Thanks appreciate it. xx

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