charliehorse

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About charliehorse

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  1. Hi Dimarzio, It's difficult to read your posts as your desperation is palpable. Hopefully you will find that the amazing support given in these forums will help. It's bizarre how some people don't know what they don't know and what's worse, don't want to know. Invisible diseases are tricky beasts. I've dealt with disbelievers for many years in the workplace. The first specialist I was sent to was a physician who had 0 empathy and seemingly 0 knowledge of scleroderma. He would open up his big important looking books and use words I had no access to. At the end of one my sessions (the last, I believe), he said I was lucky I didn't have Huntington's Disease. I believe he found that classic piece of advice on page 32 of the official Bedside Manner Booklet. I hope you find solace and a way to manage the stress you are experiencing. Life is hard enough without feeling there is no support. All the best.
  2. Hi Everyone, Bit more of an update on the digital pitting situation. Feels very much like I have the same sort of pain in my right thumb now, so I'm guessing it's another case of digital pitting. It came on last year after I'd been handwriting quite intensely, and never went away. My middle finger gets a bit of a work out using the mousepad on my laptop and my thumb from handwriting, so it seems like Raynaud's fingers need to be treated quite delicately. That's my theory, anyway, if it's of any use to others. Warmth to you all, Charliehorse
  3. Well, it turns out the sore middle fingertip is digital pitting. The pain came and went all year, sometimes very severe. It got to the point where it felt like there was a build of fluid there. It was diagnosed a few weeks ago. Anyway, thought I'd post an update in case it's of use to others. And Jo, those gel protectors are great!
  4. Hi Tbhof, My first experience of Raynaud's was just the tip of one finger but it progressed to all fingers and then to the hands as well. The severity of the attacks depend on the situation: how cold it is and how long I am cold for, etc.
  5. Hi Jo, I'm sorry to hear about your surgery. Bad care is so disempowering. I wish you speedy healing. To help get the ball rolling, I thought a little J & W laughter might help: 'Honoria Glossop was one of those robust, dynamic girls with the muscles of a welter-weight and a laugh like a squadron of cavalry charging over a tin bridge.' And: 'It was one of those still evenings you get in the summer, when you can hear a snail clear its throat a mile away.' :VeryHappy:
  6. Hi Andee, I remember being in the same place as you. Not knowing is incredibly stressful. Don't go researching Scleroderma in too much depth as the internet will freak you out with worst case scenarios. This can lead to a serious case of catastrophizing. Even if you are eventually diagnosed, you might have a limited form, stabilize and experience few problems. Useful research is finding ways to keep warm to prevent Raynaud's attacks. Invest time online shopping for cute gloves and scarves and hats! I wish you all the best and much calm.
  7. The rubber fingertip protectors are a revelation. They keep my fingertips entirely off the keys while typing. I couldn't find any fancy cloth ones or gel ones, Shelley. Would I find them in a pharmacy? I found the rubber ones in an office supplies store.
  8. Thank you for your support everyone. Must be a sensitive finger time. I'm noticing other fingers are a bit sensitive. Thanks, Shelley, for that advice. I'll see if I can source some finger tip protectors.
  9. Finger much better now due to wrapping it up and not using it. I had an x-ray which came back all good. Doctor explained that with less flesh there, there's less protection, and therefore more trauma. :D
  10. Thank you both for your instant support. I will certainly give my doctor a call. It's interesting how we shove pain into the back of our minds never really thinking it might actually mean something. (That got me into a spot of bother with appendicitis once!) And I am still loving Wodehouse! I have a friend who loves him also and we often send each other spontaneous quotes. It's good to hear from you both. Will you let you know the outcome. Kind regards, Charliehorse
  11. Hi Everyone, It's quite a while since I last posted so I hope everyone's well. I've just realised that I have potentially been ignoring a problem in my middle fingertip for some years. It has been sore for such a long time but I always assumed it was because I type quite a bit. (I'm not a secretary so I don't type that much.) But now it is even more sensitive and more painful than usual. It's a bit swollen as if there might be something in there. Of course it could be unrelated, but I just wondered if anyone had had a similar experience. I have Raynaud's quite severely, though it is summer at the moment so I'm not having as many attacks. Thank you, Charliehorse.
  12. Hi Shelley, Thank you for your help. I'm now three and half weeks done and the headaches are gone. The jaw is still a little odd but better than it was. As for how effective the treatment has been, I am still waiting to see. I will update any news. Kind regards, Charliehorse
  13. Hi Jo and Amanda, Thank you both for your support. It's two weeks tomorrow since my last infusion and I'm still experiencing what appear to be side effects from the Iloprost. My jaw is still saw / tense and I am still getting headaches in the forehead region, similar to what I had while on the infusions (and paracetamol and endone), but much weaker now. It feels like the intensity is fading, so that's definitely a step in the right direction. I read somewhere (on a British site I think) that Iloprost can take up to 6 weeks to take full effect. I'll be interested to see where I am at that point. At present it seems to be helping mildly, in as much as the blood seems to return to my extremities quicker than without, but I am still having many attacks a day. As many attacks as the times I experience temperature change or coldness. Today was a particularly bad day as I was exposed to cold temperatures for a lengthier period than usual and like the olden days (pre-Iloprost) my hands and feet went numb and were very painful. I'm not sure if there is research to support it but I would put money on the fact that I have Raynaud's attacks in my brain. When I am cold it feels very much like there is not enough blood up there. Thinking is difficult and vagueness reigns supreme. I'd be interested to see if there is any research into it. Kind regards, Charliehorse.
  14. Hi Shelley and Jac, Thank you for your replies. I find that it is a bit of both in terms of cutting down and cutting out. I find that if I am generally diligent and do not overload my stomach I can tolerate small amounts of some things. If, however, I am eating lots of wheat, for example, then I suffer quite a bit. There are some foods that I can't tolerate very well in any amount like onion, apple, pear and legumes. It does make it tricky to eat well when there are many things to leave out. I especially miss chick peas as I tend to eat vegetarian meals.
  15. Hello again everybody, I'm wondering if anyone can help with a question relating to Iloprost infusions. I finished a three-day infusion a week ago and I am still experiencing jaw pain, migraines, tiredness and intense vagueness (even more so than usual! :emoticon-dont-know: ). My muscles are also quite fatigued. I had endone, paracetamol and anti-nausea medication (can't remember what kind - see, vagueness!). The drip rate (or whatever you call it) was quite high as I was keen to get each bag completed. Thank you in advance for any feedback.