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About winnie97

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  1. Hi, I'm currently waiting for the outcome for my request of early retirement on medical grounds; general practitioner and consultant reports have gone in and I'm now waiting for the independent Dr to make a decision on whether I get it and if I do, what level I will get . I'm 47 and suffer from systemic sclerosis , I feel relieved about not having to struggle with work but nervous about the future; I've worked since I was 14 in some way shape or form, but at least now I can take each day at my pace and rest when I need to. Has anyone else taken retirement on ill health grounds? Winnie97
  2. Hi all, Saw my rheumatology consultant today, She is increasing my methotrexate and starting me on Hydroxychloroquine Is anyone else on this combination and how have your symptoms been since starting ? At the moment she is at a bit of a loss as to how to control my symptoms as I have several overlap immune conditions and she isn't sure which symptom is coming from where. Diana
  3. Hi, I live in northeast England near Durham and to be honest I'm not impressed with my consultant at the hospital as she has never treated anyone else with systemic sclerosis (SSc). I feel like I'm an inconvenience to her as when I see her there is a lot of sighing on her part and she can't wait to get me out of the room. Her cure all seems to be a steroid injection for everything, which by the way have never worked; only long courses of steroid with methotrexate do the trick for me! She told me I didn't have Sjogren's and that my very dry eyes and mouth were down to a type of medication I was on. I told her that I had stopped it months ago so why would I still have those symptoms? Well, shortly afterwards the eye clinic confirmed I had it when I went as an emergency as I couldn't stand any light at all and they said they had never seen as many dry spots on someone's eyes before. And did some tests, to confirm it. 1 to me I think. Anyway What I would like to know is, how do I find a consultant who knows about scleroderma? And how do I get to see them? Any help would be great. Diana
  4. Hi, I too have had tendonitis in my feet on and off and when it's bad it makes me unable to walk my general practitioner never mentioned it could be related to my systemic sclerosis. I have also had it in my wrists and hands. I've never mentioned it to my consultant as she always dismisses any of my symptoms; as she sees it, smaller symptoms as nothing to do with systemic sclerosis (SSc), but when you read information about them they clearly are. But as she has never treated a patient who has had this before, I'm never very confident in her and find my general practitioner more knowledgeable and willing to do her best compared to the hospital where I seem to be ushered in and out at great speed. Diana
  5. Hi, I am glad you have found us; unfortunately diagnosis can be a long and difficult path. I was finally diagnosed in 2008 only after I moved house and had a new general practitioner who decided that there had to be something wrong with all my symptoms. My other doctor had dismissed them; after 9 months of tests and to and fro to the hospital I had the answer; even though I had never heard of it until then. I knew it was something out of the ordinary as the consultant leaned over as she told me and put her hand on my knee and said sorry !!!! I don't have any of the skin problems but have Raynaud's, Sjogrens, extreme fatigue, throat problems, bowel problems and am on 40 tablets a day . Seek a second opinion and get as much info as you can on our condition; my consultant openly told me she had never treated anyone with this before so quite often I give her information that she doesn't know. Information is key and don't be fobbed off , Hope your trip to the medical center gets an answer for you. Good luck, Diana
  6. Hi, I've been trying to find a support group in my area but can't find any. Are there any sufferers in the Durham, Tyne and Wear area of the UK? Diana.
  7. Hi, my liver count has been increasing rapidly over the highest normal range for the last few weeks. I have been told to stop taking my methotrexate and have another blood test next week. I also have constant pain in my upper right quadrant under my ribcage. I'm worried that I may have problems with my liver; anyone else had similar problems? My general practitioner rang me yesterday to say she had been onto the hospital because of my latest results and spoken with my consultant who had told her to stop the methotrexate. I have to have a blood test on Thursday so my general practitioner gets the results back on Friday. She wants the results fast as she is away the next week. I'm very worried I seem to just get over one thing and then something else happens . Diana
  8. Hi, thanks for those replies, I'm reducing my hours again so that I will only work 2 1/2 days now, I think I'm just delaying the inevitable. The council's occupational health doctor whom I see due to my massive amounts of time off sick, said at the last interview that the school I work for could do no more for me; I've been moved downstairs, have a disabled bay basically outside my classroom, I no longer do yard duty or dinner hall duty, I have a special chair and voice activated computer program that I got through access to work. So there is no more they can do to help with adjustments or accommodating my working hours so I think we're at the end of the road here. He said he would support me asking to reduce my hours, he also said he didn't know how I was managing to get to work at all, so hopefully he would be supportive if I was to go down leaving due to ill health. I think my general practitioner would also be supportive , I presently have 5 consultants; my rheumatologist consultant has supported me before when I reduced my hours so hopefully she would be supportive. On my days off I feel far less stressed as I know I can get up when I want, take my time to get ready or not depending how I feel. I can rest when I want and don't have to put on a happy smiley face when all I want to do is scream the place down due to the pain. My job is quite stressful as I work in a behaviour unit in a secondary school; a typical day is students swearing at us, tables upended, water thrown, refusal to do work, books thrown, doors slammed; as you can imagine if you're having a bad day pain wise or otherwise, it's the last place you want to be. Diana
  9. Hi I was diagnosed with systemic sclerosis 4 years ago after several years of going back and forwards to the doctor. I was actually told by one doctor before my diagnosis that if she had a £ for everyone that came into her surgery saying they were tired and in pain she would be a very rich woman !!!! Then she told me to go to a spa for a weekend !!! 2 days later I collapsed and was found to be severely anaemic with a very under active thyroid; that was the beginning of all my conditions. Now 4 years later I have so far been diagnosed with systemic sclerosis, under active thyroid ,diverticular disease, Raynaud's, Sjogrens, IBS , GERD, Fibromyalgia, chronic bursitis of the hip, and lumbar spondylosis. Last year I had an operation for a shoulder impingement, the pain has recently returned in my shoulder so going back to see the ortho consultant. And just to finish things off I'm now going through an early menopause. I am on 43 tablets a day apart from Saturday when it's 50 as I take my methotrexate then and on Monday it's 44 as that's the folic acid day and on top of the tablets I am also on daily artificial tears, saliva, nasal spray, and what I call industrial strength moisturiser. I did work full time but now only work 3 days a week but am considering giving up altogether as I very rarely make 3 days. I'm in constant pain despite all the painkillers ( pain medication , paracetamol, amitripylene, a new one for nerve pain but I can't remember what it's called, and one other painkiller but can't remember it's name either) . I have no concentration, suffer brain fog , forget things, my hands are really bad at the moment all the joints hurt and the top knuckles are red but not hot, the tips of my fingers hurt if any pressure put on them e.g. typing, pushing phone keys, it's painful to grip and I have a very weak grip. I walk with a stick because of balance problems and the pain in my hip, if I want to go to the shops I have to be pushed in a wheelchair as I can't walk round a shop due to pain and the exhaustion I would suffer even then 1/2 hr to 1hr is enough. I currently get DLA at the highest rates for both. Not sure how much longer I can continue at work; has anyone else finished work through ill health? And how do you go about it? I work for a local authority, I know that another lady who worked for them had fibromyalgia and they have so far refused to finish her even though she hasn't been to work for 3 years and won't be returning they said she has to hand in her notice . Any info would be great fully received.
  10. Hi, I was diagnosed with systemic sclerosis 2 years ago; for the last 18 months or so I have been having cognitive problems. When I spoke to my specialist she dismissed my symptoms and said that Scleroderma has no effect on the brain; anyway after a bit of research I have found several articles in reputable medical journals about brain involvement. My cognitive functions are deteriorating to the point where now I can barely understand what people are saying to me and I have to get them to repeat several times even a simple sentence. People are beginning to think I'm going deaf which I'm not ; it is very frustrating for me and whoever is talking to me, also I constantly can't seem to get words out; they are on the tip of my tongue but I can't get them out. My sense of balance is off as well; when I write things down (this was typed for me) I have the right letters for a word but in the wrong order, this can happen a few times in a short paragraph .Reading is not a problem but comprehension of what is written is. Does anyone else out there have any of these symptoms? I read one article which seemed to fit me which was talking about receptive aphasia and another on cerebral hypoperfusion. I'm due to see my specialist this Friday but am reluctant to mention what's happening as she dismissed it so much the last time and laughed when I asked if Scleroderma could effect the brain. Any help would be great, by the way I live in England Diana.
  11. Thanks for all your information. I saw the doctor on Thursday, she didn't say much about my shoulder, and was more concerned with my hip. I've had bursitis in it for a number of years, the steroids I was on kept it at bay but since coming off them in January it really flared up, so now I'm back on the steroids on a higher dose than before. She will decide what to do when I see her again on 4th March; she also said that is when we will talk about my shoulder and where to go from here with it. Regards winnie97
  12. Hi, My list of Scleroderma symptoms seems to grow ever longer; the last few days I have noticed that my middle and ring finger on my right hand and my middle finger on the left hand are very sore to touch or if I apply pressure e.g. typing or picking something up. I have Raynaud's , do any of you think this is connected? Back to see my consultant on 4th March. Any ideas what it is anyone? Regards winnie97
  13. Hi, I've been to the hospital today and been told I need an operation on my shoulder for shoulder impingement. I've had two injections, physio and hydro therapy; nothing has eased it, they have put it down to the S word. I'm struggling a bit at the moment; consultant took me off steroids as I had been on them a year and she wanted to give my body a break, still on the methotexate though. I've been fully off steroids since January and since then my aches and pains have come back with a vengence; bursitis on my hip flared up, have to go for injection into that, knees very painful, elbow pain worse. I'm off work at the moment as I can't get any ease from my hip, sitting, lying, standing and walking are all very painful, but I have to go to the hospital for that, as the hip is the only joint that the doctors at my surgery don't inject, so I've been waiting 2 weeks so far for a hospital appointment. I'm going back to see my general practitioner on Thursday; she's given me some gel to rub on for the pain and also a cream to rub on for the inflammation, but it's not doing very much so no doubt it will be another sick note on Thursday. It's so frustrating having to wait so long for an injection; it's a good job my work is so understanding and know if I could be there I would. Anyone else have these symptoms or can suggest anything that will ease the pain or stiffness? Thanks, winnie97
  14. Well, I give up. I've now got tennis elbow to add to my long list of other problems. I'm feeling very frustrated; I'm already having hydro therapy for my right shoulder which is very painful and stiff and now my left elbow is painful; at the moment it's just one thing after another. Does anyone else have these problems? winnie97
  15. Hi, I, too, get jaw pain every couple of months; it lasts for a couple of weeks and then goes for a while. I went to my general practitioner who asked me if I scuba dived !! Well, when I stopped laughing I told her no, bearing in mind that she knows I can't walk far and am in excruciating pain all day. Well, she said, it was quite common in people who scuba dive and that the pain would ease, so feeling very frustrated I left. I think I've given up with my general practitioner; she's hopeless. Regards winnie97
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