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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 diagnosis' has me a bit up the wall at the moment but hopefully that will sort itself out - or be sorted.. I'm calling the hospital later today for a bit of advice on that one My dad, sister, hubby and I are all off to Scotland at the end of this month to scatter some of mums ashes in one of the places she really wanted to visit but never made it to. It's going to be the second trip 'up North' for dad as he and his sister took mum to Dunoon in August and scattered some ashes there too. Dad was a drummer in a Scottish Pipe Band when they met so most of their first 18 years of married life were spent in Scotland at weekends at band competitions. Seems only right she should go to some places that made her happy. Dad is much better too now after a few heart scares (and hospital stays) in the last few months, I think it is helping him too to go back to the places where they were in happier times. San x
  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 for something that takes up to 2 months to become effective I'm starting to get a bit concerned at the way I'm feeling after just one week. I'm used to not sleeping well due to reflux and muscle spasms at night, but being awake and having numbness in my arms and legs, feeling like I am shaking on the inside and I have an elephant sat on my chest, is really not great.. the 'out of body, floaty feeling' just adds to the uneasiness. I was advised to take the meds at night so I would 'probably sleep through the early side effects' - hmm, I have been awake on and off since 1.30am (so just over 2 hours sleep)and have to be in work at 8am :( I think I will be giving my nurse specialist a call later today just to check that all this is 'normal' - although the 'elephant on my chest' has me a bit worried, it's a couple of years since he last visited and I thought we had chased him away for good. I was going to call the hospital anyway to arrange a steroid injection as the old meds have worn off and new ones are not effective yet. Painkillers aren't really helping as there are only so many you can take and still function - at the moment the return of the 'sausage fingers', knees that want to bend the wrong way, creaky neck and dodgy hip are really starting to annoy me. My old nan got around better at 90 than I am doing at 44. Anyway... I hope everyone else has had a lovely nights sleep and the wind and rain that is covering the UK hasn't kept you awake too much Take care San x
  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 mum very suddenly 15 years ago. She is also one of the few people that understands my condition. When I was first diagnosed she went out of her way to speak to different specialists to find out as much information for us both as she could. That she actually knew one of the guys on your Scleroderma Experts list was amazing, he ended up as my rheumatologist up until he retired about two years ago. During the 4 days mum was in hospital we had constant texts going back and forth, that she works in an intensive care unit herself helped me to understand what was going on. I have ‘orders’ that I am to call her when I am ready to talk about it all, I think I may need that more than I realised. Thanks for giving me the nudge to ‘see straight’ xxx
  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 - it was all so sudden and totally unexpected. During the time spent in ICU I could feel a 'flare up' building but tried to ignore it. I just upped my meds and hoped for the best. Dad has a bad heart and has no idea of my condition, only that I have 'dodgy joints' (the rest is easier to hide) So trying to be there for him I sort of pushed my own issues away and hoped they'd disappear. Nearly four weeks later the flare up is still here but it sort of comes in waves which I have never experienced before. I know that stress can be a factor with flare ups but really don't know what to do for the best - it's 'Catch 22'. I seem to be coping fine with the pain and limited movement until someone asks 'how are you doing, sorry to hear about your mum' - then the pain kicks up a notch and in my mind I am right back in the ICU saying 'goodbye' I know it's only been 4 weeks, opposed to the 44 years I had my mum, but I really need to be able to get a handle on this. Dad and my sister have both gone back to work this week, I have a note from my general practitioner for work for last week and this week, then next week I had holidays booked anyway as my youngest son has his university graduation. As long as no one asks me how I am I seem to be ok, but people are 'too kind' and tend to ask quite a bit - it's bad when you're getting to the point where you want to stay indoors (and hope nobody visits) just so you have a chance at feeling 'ok' - but sitting on my own with time to myself really doesn't help either in a way as it's time to think about the last few weeks - it's definitely a 'Catch 22' situation and this flare up is really not giving an inch. Starting to think there may be a bit of Sciatica in there too as the pain in my back and right hip is 'different' this time (everything else is just the same). I may need to go back to the doctors in case this needs something different. Last time I had sciatic problems was during my first pregnancy and that's going back a 'bit' as my eldest is 26 now! I really don't know what to do for the best :( Sorry this went on for so long - thanks for reading :) San x
  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 what the problem was 'ah that will be the systemic sclerosis, bowel involvement, we need to let the hospital know'- all this time I was under the impression that my issues with dairy were down to a lactose intolerance and the white bread problems were just 'one of those things' - seems that by avoiding both I had been helping myself without realising. I just need to make a few more dietary changes now. On the 'upside' at least the general practitioner has a clue about SSc. Even if she did just assume I knew that was the cause, a little patronising but at least she didn't just tell me I must have had a dodgy takeaway Anyone have any advice on what has worked for them and how I can help myself while I'm waiting for the hospital appointment? Take care San x
  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. I sat through a couple of daytime movies but then all the others appeared to be 'weepies' with people dying or leaving each other - time for the book instead! Amanda I know the film you mean; I did it the opposite way around. I got my diagnosis and months later while still trying to find more information on the condition spotted the film in the TV guide and decided to give it a go.. ooh big mistake. I found it quite disturbing that she went from diagnosis to a 'body bag' in such a short time. At the time I had 2 young sons and the thought of not seeing them grow up scared me silly... I'm still here after all these years tho and have seen both my boys grow into wonderful young men, maybe I'm biased but I'm their mum so it's allowed :D Hope everyone has a good day today Take care x
  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 optimism, it's sooo frustrating. A miserable nark has seized the opportunity and taken up residence in my head. I think I need to hide away until normal service is resumed - or watch some daytime television so I can see how much worse it could be! :blink:
  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 talking point when I go shoe shopping... keeps everyone smiling :D Hope you find some that you like.
  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 that I discovered after the operation - the first pair were a joke present from my sons but now I have loads of them. Hope you have better luck with future treatments and your doctors are able to help. Take care, San
  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 added rheumatoid arthritis and osteoporosis to the mix over the years but it's not all bad. Having a fantastic medical team and family that 'kind of understand' really helps - not to mention the fab people on here that are able to offer help and advice when you need it. Thanks guys
  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 is there. I guess the people around us are good at noticing when something is wrong but the constant 'are you ok' and feeling that you have to tell that little white lie to save yourself from being smothered, or to save them from worrying is sometimes just too much Hope things pick up for you soon Take care San
  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 have been taking it in the evening. I've not had any side effects other than itchy skin, and I can live with that, so it's all looking good so far. I have blood tests lined up for 5 weeks time and I'm back at the hospital for a 'review' in 2 months time - although my doctor did say I may not feel any benefit for a few months. I have my fingers crossed that it all works out ok. Your 'ink blot and feeble mind' comment made me giggle Jeannie - my doctor was trying to explain the Amsler grid and what I should look for. She told me that with her dodgy glasses her mind sees all kinds so she can only tell me what the books say I am supposed to see.. hahaha I want some of those glasses :wacko: Thanks so much and take care San
  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 thought of my eyes being affected too is really worrying, especially as the effects can be pretty quick to escalate - books are my escape when the pain has me flat on my back. I thought that fellow Sclero folk would be the best people to check with regarding experience of this drug. Hope everyone is well and the good days are outnumbering the bad Take care San
  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 fatigue (all of which I have found are part of my 'normal' day anyway) so I just wanted to pick some sclero brains to see if anyone else has been prescribed D3 and if it helped with these usual aches and pains too. I know we're not doctors on here but as we're the 'guinea pigs' for a lot of different treatments I just thought I'd check in. take care San x (hope everyone had a great New Year)
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