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About tisonlyme

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    Bronze Member

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    Cheshire England
  1. Hi ladies and thank you once again for all of the advice and the 'nudge'. I finally managed to get my flare up under control and get my head straight enough to go back to work at the start of August. Going back to work was really hard, people are just 'too nice' and well intentioned kind words just 'set me off again' My 'coping' was to sit at my desk, headphones in and some nice chilled music to provide 'white noise' just so I didn't have time to think and just get on with all my reports and things. Still having some difficult days but it's getting easier. A recent meds change and 'new di
  2. Very strange Rheumatology appointment last week. I was diagnosed with Systemic Sclerosis thirteen and a half years ago (after two years of indecision and numerous tests). For eleven years after that I was treated by a fantastic Scleroderma expert until his retirement. My new doctor has now decided that I may not have SSc as it is 'not behaving the way it should'(??) Most of my 'issues' at the moment seem to be coming from the rheumatoid arthritis so a meds change it is. I moved to Sulfasalazine last October for the RA and then last week this was swapped for Leflunomide. I've got to say
  3. Thanks so much for the advice ladies Being so wrapped up in the pain from the flare up, talking about what happened and counselling never even crossed my mind. I have been in touch with my boss this morning and our company has an employee support programme so I will be giving them a call. That it all happened so quickly really knocked me sideways. One minute we were joking about hospital food and if there were any 'religious/cultural grounds' for mum to have chicken and chips for her lunch - the next she was sedated and on a ventilator. I have a friend, of over 30 years, who lost her
  4. I could really do with some advice from people who have probably been where I am right now or a similar situation.. it's like a vicious circle I guess I have been lucky that in the 13-14 years since my diagnosis of Systemic Sclerosis I haven't lost anyone close to me. Yes, there have been grandparents and aunts/uncles, but you only get one 'Mum' Mum had not been ill at all (apart from a cough) but then after troubles breathing was rushed to hospital by ambulance. There was a diagnosis of pneumonia, a collapse, followed by three days 'critical' in intensive care and then she was gone -
  5. SSc sure is impressive.. it can still throw something new at you after 13 years.. I'm not that impressed with the 'new' effects though. I thought I'd managed to dodge the bowel involvement - well I suppose I did for 13 years, wooh go me! Thought I just had a bit of a stomach bug over the last few days but it turns out I'm off to be poked and prodded by my specialists again, I was only there 2 weeks ago. I only went to the general practitioner because the constant trips to the toilet meant I might as well be putting my meds in the bin - everything is hurting. Explained to the doctor wh
  6. Morning all No nose dives into the wardrobe this morning so things are looking up... Thankfully the only thing that got 'damaged' yesterday was my husband's sleep (when the crash woke him up) and my shoulder as I half turned to avoid full facial contact with the wood Leg is still sore but I didn't really expect it to improve overnight, I have my fingers crossed that another day of heat and rest may do the trick. :woohoo: looks like I may have regained my cheerful optimism too :VeryHappy: I decided to give the daytime TV a miss and just settled down with my latest book instead.
  7. What a day and it's not even 11am! Started having problems down my right side last night.. took all the usual meds and took myself off to bed to hopefully 'sleep it off' Getting out of bed this morning I found myself heading face first into the wardrobe as my leg gave way completely.. What a way to start the day - and I thought Monday mornings were bad! So rather than going off to work today I am propped up on the sofa with my leg up on cushions with a wheat heat pack over my knee.. Some days it is just 'one of those days' and today I have been abandoned by my usual cheerful
  8. Hi ladies I just LOVE my toe socks.. and they really are soo much warmer than regular socks.. you can get them most places - I've even found some in local pound shops.. just need to check the leg length on some as they can be quite short. If you fancy a go at 'extra wacky' there is a website that does them in 3s rather than pairs.. they advertise them as a 'pair and a spare' but in fact they are 3 different coloured socks.. the ones I have from them are a red/white stripe, blue/white stripe and orange/white stripe - the toe bits incorporate all 3 colours.. soo much fun and quite a talk
  9. Hi Queenie, I can't help on the dental extractions but I do have an issue with my feet/toes. It doesn't help that I was born with dodgy toes anyway but the SSc seemed to make the problem worse. I had an operation a few years ago to shave bone from the side of my feet (base of the big toes)and to lengthen the tendons in my other toes to try to get them to lie straight. Recovery was bit longer than they expected but the operation on the left foot was a success - the doctor wants to do the right foot again but while it doesn't hurt I keep saying no. My picture shows my passion to toe socks th
  10. Well it's been nearly 8 weeks now since I started the Hydroxychloroquine. The itchiness has died down and the headaches are soo much better too. No problems with my vision at all so just got to see what the blood tests show next week but all is looking good so far. Had my PFT and ECG last month too and there was nothing out of the ordinary there either so all in all it's been a pretty good couple of months - in spite of the cold playing havoc with the Raynauds. Ah well, you can't have it all. It's now been 12 years (next month) since my Systemic Scleroderma was diagnosed, I may have ad
  11. Hi Queenie Sorry you're having such a bad time at the moment - there are people here that understand where you're coming from.. I found the 'spoon theory' that Jo mentions a really good way of explaining things - even though you don't want to 'burden' family with your issues it helps them to understand. I have a very close friend and the 'spoons' have become our Facebook code.. on particularly cold/damp days she will pop a note on my wall to say she hopes I have enough spoons and to call her if I need any - others may think we're mad but it really helps just knowing that the support i
  12. Thanks so much for your thoughts on this, I really appreciate it.. the links were great Jo, thanks I think that because it involves my eyes/sight I am a bit more wary than I would have been about any other side effects my doctor mentioned. I suppose it's like everything else - there are the pro's and cons and it's a bit of a balancing act. Hearing that your opthamologist has seen so little of this is certainly reassuring Shelley, thank you. I wasn't given any specific time to take the medication, just 'take with food' - as the only time of day I am guaranteed to eat is after work I hav
  13. Hi all I have been a member here for a while now but am normally just 'lurking' in the background. Just wanted to ask if anyone has any experience of Hydroxychloroquine? I went to my rheumatologist last month and she has prescribed this to see if it helps. I have had Systemic Scleroderma for 12 years and now have Rheumatoid Arthritis too. The thing that has me a bit freaked out is that my doctor has told me that I need to use an Amsler grid to check my eyesight at least once a week in case of any changes, at which point I would need to stop the meds and go back to see her. Just the
  14. wow thanks very much for that Amanda, I really appreciate it.. I have just read the other posts and the main study link too. It certainly sheds light on a few other things too. My husband has fibromyalgia and ankylosing spondylitis and takes huge amounts of pain relief - he's now going to ask his doctor to check his vitamin D levels too - it certainly can't hurt to check. Take care San x
  15. hi I have just been doing some 'research' after having a 3rd set of blood results show low calcium serum levels. My rheumatologist re-ran the bloods after the low count came up in November & December. I was back at the doctors today for the results and to get new prescriptions. I now have vitamin D3 supplements which will apparently help my body to absorb more calcium. As I'm sure everyone else does, I have been trawling the net for information on this latest 'ailment' and have found that the low levels can affect your bone profile and cause muscle cramps, joint pain and fati
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