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Lil Dee

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About Lil Dee

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    Senior Bronze Member

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    Manchester UK
  1. Hi Marsha, I agree with Amanda's comment regarding Plaquenil (also known as Hydroxychloroquine) I have been on plaquenil for a few years now, and I find it has helped the fatigue and the pain in my joints. For the Raynauds, I have been put onto medication that would normally be used for people with high blood pressure. The reason for this, is that things like Amlodipine, Lansoprazole and others, act as vasodilators - which means they increase the diameter of your blood vessels, allowing more blood to get to the extremities, which hopefully reduces the effects of Raynauds. Having be
  2. Hi Jac, Sorry to hear you're having such a traumatic time with the diagnosis and the treatment at the hospital. I can only imagine just how alone and vulnerable you have been feeling Well, you have found the best place for support, help and advice, and very gentle, warming hugs whenever they are required ! :emoticon-hug: Hopefully, now they have a confirmed diagnosis of SSc, they should be able to help with some of the weird and wonderful symptoms that come along with it. Please don't think that each visit to the hospital will be the same, if you can stay calm, and explain about your
  3. This is a subject very close to my heart. I have been suffering with Achilles Tendonitis for about two years now, and have almost continually been taking pain relief. I also injured my back/neck back in Sept. 2009, and go for physio for either ailment reasonably regularly, to help manage the pain too. My rheumatologist knows I'm taking the pain relief including ibuprofen, and they've never said anything about my taking them, though I am on Lansoparazole (PPI) to help protect my stomach, so I wonder if they're happy that I don't complain about stomach issues? I have recently been thinki
  4. Lil Dee

    crest

    Hi there Allyrob, Welcome to the best place for understanding support and lots and lots of information about this very complex and confusing condition. I do think that asking to be referred to a Scleroderma specialist really is the best thing you can do. I have been seeing a Rhuemotologist for about three years now, and I have just gotten to the point where I was going to ask for the referral to a specialist.....I think we were on the same wave length as my rheumatologist has also decided to refer me to a specialist when I went to see him this week. I came to the conclusion that I
  5. Ohhhh, Susie, I like the velcro hot water bottle idea too - that way you never forget to pick it up and take it with you ! Jo / Amanda, yes, we do have the usual struggles on our office with people being hot and cold at the same time - we find that simply sitting three feet to the right can mean you are freezing compared to your colleague. So much for air conditioning, eh !? Snowbird - I only WISH our H&S laws were as commons sense as yours. Sounds like you have the exact same fan heater that I do, that they refused to allow me to use. Yup - red tape gone mad !! Still, I'm goin
  6. Shhhhhhh......I wasn't going to mention this bit, as I was hoping that there might be someone out there who is the exception to the rule !! I ended up with four cannula sites over five days, with a number of unsuccessful attempts in-between. Lizzie's comment that the nurses are better at doing the cannulation than the doctors is quite correct - they are by FAR the more experienced in this procedure. However, at the Royal Free, I suspect that cannulation is a day to day part of the routine for most of the staff......unlike the general ward I found myself on !
  7. My office is cold yes. My problem is that due to our wonderful :rolleyes: Health & Safety regulations, I am not allowed to have a fan heater. I work in a large three storey office block, and in our area (Ground Floor) we regularly complain that the temperature is too low. On the second floor however, it's always too hot - Air Conditioning !?!? PAH ! So I figured if I can find out if these heated mice, and other options, are worthwhile investing in, I'll take a look. I'm currently sat here with my porridge, my gloves and wrist warmers on (not easy to type!) and my electric hot w
  8. Hi Sue, Thought I'd give you a pleasant(-ish) report on Iloprost infusions - well, as much as I can, considering I was stuck in hospital for five days !!! I ended up on the Iloprost for 24 hours, for the full 5 days. I too have low blood pressure (no amount of smoking, drinking and eating of salty food in my early years seems to have had any affect on this !!) so was wary of being plugged into the infusion. The nurses on the first ward (long story) were very good - as I'm sure will the ladies and gents at the Royal Free - and checked we were trundling along according to schedule, w
  9. Hi All, Well, after having a little scare with my Raynauds, and a short spell in hospital, I'm not taking my Raynauds a little more seriously than I had previously. In line with this, I am looking at options to keep my hands warm, especially at work (at home, I can use a hot water bottle - easy!). I work as part of an IT Support team, and as such, I am sat at a desk for most of the day, using a mouse and keyboard. My biggest issue is keeping my hands warm whilst working. Yes, I can take my hand away from the keyboard/mouse to warm it up - but this affects my work - I can't work whi
  10. Well, what an eventful week. I went to see my general practitioner, who contacted my Consultants office, who contacted me, asking to see me on Wednesday morning last week. So, I bobbed along for the appointment - the "bruises" I mentioned under my nail by the way, are "splinter hemorrhages" - only to be admitted to hospital there and then, for a five day Iloprost infusion !! :o Cue the chaos....I had left my PC at work all signed in, along with handbag on my desk (I just took the essentials with me to the hospital) so having given up several viles of blood, and having an ultrsound on my ar
  11. :thank-you-2: Thank you all for your informative responses....and yes, Jo, I'm still hanging around these parts, though not posting quite as much (I'm in a 'down' mood at the moment, and combined with the fatigue, I don't feel much like doing anything other than sleeping - but I am consciously trying to work on that) The links you've posted are very interesting, and I've had a good nosey around and learnt quite a lot that will definately help me. I couldn't help but giggle though, when you all mentioned about keeping my core body temp. up - I have a fan on my desk at work, as I regula
  12. Hey guys/gals, I have for the last few months been on Nifedipine to try and ease my increasing Raynauds episodes. I live in the UK, and started taking it after my summer holiday last Septmber, in preparation for the winter on-slaught. *groan* The weather has been much kinder this year than the last couple, so in that sense I've been quite lucky as it's not been that cold outdoors. However, my Raynauds attacks don't seem to have diminished or eased in any way - in fact, I am currently typing with a purple tipped finger, which is just not responding to anything. OK, It's not brig
  13. Well, ladies / gents, I set off to work today in rather nippy weather....my car said -9, which I believe converts to just about 16 degrees in your money !! :blink: My "Little Hotties" and my sheepskin mittens managed to keep me going til I got to the office, now all I have to do is make it home again !! Keep warm.
  14. I have found mittens are soooo much warmer than 'gloves', and now use large mittens, with the throw-away charcoal based hand warmers (they are enviro friendly !!) that I get from a local supermarket....that cost so much less than other companies (Mods - Is that too obvious !? Sorry if it is...) as I buy in bulk. I hear that one of the best natural fibres is Possom - New Zealand are currently over-run with this particular little creature. It was unfortunatly introduced to their country, and is now causing great concern due to it out-performing the indigenous animals. So, Possom fur is quite
  15. I have had a couple of issues over the last year with an injury to my back, due to a fall at home last August '09. This required time off work, and a number of physio visits, and gradually got to a point where it was as good as I feel it's ever going to get. I have been having problems with my achilles recently, and due to this, have been walking at a strange angle - enough to cause the issues with my back again :rolleyes: I have contacted my physio (who I have no issue with, she was excellent) and she has a new machine, which she is hoping will help - especially with my Sclero compl
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