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About trishtrub

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    Bronze Member

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    Wolverhampton, United Kingdom
  1. Hi all xx I'm re-writing this so if it appears twice I must appologise, I did a spell check on the last one and it disappeared! Says a lot for my spelling! x lol x Anyway I went to see my rheumatologist on Tuesday and once again came out feeling like I must be imagining all my symptoms! My usual consultant had cancelled his clinic , so I saw one of his sidekicks! He was most concerned with my Raynauds because I am still having symptoms even though I'm on adalat retard twice a day, he has increased my dose so we'll see! I told him about my aches and pains, including my arms feeling as though I have no strength in them, I explained that I can grip things but feel as though everything weighs a ton when I try to lift anything. He pulled me around and prodded me but said he couldn't really see what the problem was, he thinks my aches and pains are just wear and tear!!!! The next thing he said was "this CREST thing is really nothing to worry about", class comment, my husband said perhaps he would like to try it! The next thing was fatigue, he said my bloods don't show any reason for the fatigue, he suggested I went to my general practitioner and told her about it!! I told him I had been having trouble with my ankles really aching at times and a ball like swelling at the front of both my ankle bones, he examined them and said he couldn't feel any swelling, by this point I was a little annoyed!!! I pointed out the swelling again and he said that yes he could feel the swelling and is sending me for a ultrasound to see if its related to my CREST. At this point other than general aches and pains and terrible fatigue I'm not doing to badly, but am concerned that CREST is not taken seriously and that the support won't be there if there's any deteriation in the future, if anyone knows of a Sclero specialist in the West Midlands will they please give me the details. Anyway I think that was about it for my consultation, next one booked for June! Wishing everyone Happy holidays, keep warm x Trish x
  2. Hi all, Thank you very much for your replies. I took Amanda's advice and went to my doctors today, regarding chest pain. The doctor sent me to the emergency admissions department where all of the staff were wonderful and gave me ECG, bloods to check for clots and chest Xray. All came back okay so they basically said its CREST related pain and take Ibuprofen! They don't think its esophageal spasms as I'm taking Lansoprazole. I will be seeing my rheumatologist in December so will discuss it with him then. My doctor asked me if I had had my swine flu jab today and I said that my husband had been told by the surgery that I wasn't in high risk group, she seemed a little surprised and said I really do need to have them, so I will be having them next week! Oh yes definitely time for thermals and layers, Raynaud's becoming a regular occurrence again! Nice to speak to you all again. Take care and thanks for all your support, Trish
  3. Hi everyone, I have CREST and suffer with aches and pains, although I find fatigue is one of my worst symptoms. When I was first diagnosed I was in lots of pain and very tired so was on sick leave. I have gone back to work three days a week, eight am till one thirty , I am totally exhausted and need a nap when I get back, do others find this too? I work at the hospital doing clerical work and we have been offered the flu vaccine and now the swine flu vaccine. My husband asked at our doctors and was told that CREST isn't in one of the high risk groups. What advice have other CREST sufferers been given?. Nervous of having injection in case it starts me with a cold that will, as it always does, end up on my chest! Also I have esophagus issues, only mild I think, but I sometimes get very bad pains in my chest which almost double me up and can last a while, is this a symptom others with esophagus issues get? Lack of get up and go! Some days I can walk fine and have energy, other days I feel that walking up the stairs at work or dropping my daughter to her friend's house up the road is like trying to climb a mountain! I had a scan on my my heart and a lung function check earlier in the year and these seemed to be ok so do you think its the fatigue causing this? Last thing I promise, yipee holiday is nearly here my children are twelve and ten so I am going to enjoy every minute with them because they are growing up so quickly and will soon just want the money and find my suprises very uncool I'm sure!!! The only problem is that with holiday comes the cold weather and I have been pretty much Raynaud's free thanks to mild weather and adalat tablets, but in the last week I have had about half a dozen episodes, lots of nice gloves and thermals on my holiday list!!! Just reread what I've written and hope it makes sense, all very disjointed I think, It's nice to be able to come on and talk about issues others might think was just whingeing!! Catch up soon x Love to all xx Trish x
  4. Hi Sierra Sierra First of all sorry about your partners father. You seem to be having a very busy time, No wonder your feeling worn out! Hope you find a new home and get settled soon x I can't believe the complete lack of energy that comes with scleroderma, I was feeling quite bright this morning and decided to go to the supermarket, what a nightmare, everything seemed to take me twice as long as it should and I felt more like a pensioner than a forty year old!! I came home and went to bed! Hope you can manage to relax a bit in your temporary accomodation. Catch up soon x Trish
  5. Hi Everyone I've just been reading through the replies and would like to thank you all very much for making me smile :) Talking to each other definately helps x Hi Sierra Sierra, I first went to my doctor in May too and have had all the tests which seem fine so far, but I feel that things have got worse recently, hopefully things will settle down, I find reading the forums and personal stories very helpful x Thanks for the links Jeannie I will have a look now, I'll be careful with the cyberchondria!, lol x Thanks to everyone and take care x Love Trish x
  6. Thanks Amanda x Yes I do feel amongst friends when on The Sclero Forum. So many decisions thrust upon us in a very short time, its very scary, not just the disease but also all the implications on our lives and that of our familys. Take care x
  7. Hi Everyone :unsure: First of all just want to say it really helps to read everyones account of this illness, so thank you all very much x If I'm really starting to worry about things I like to speak to you all, hope you don't mind! My latest worry is my ankles they are really starting to hurt and keep me awake at night, they are also swelling. At the moment I'm still trying to carry on as normal but am worried that the swelling is a sign I may be doing some harm. Does anyone know if I should be resting my legs? I had a steroid injection on fifth of August which really seemed to help with the pains but my goodness I now feel as though I am paying for the pain break, I seem to be aching and very weak all over. On the bright side I have been given a lung function test, heart scan and a barium swallow which although I haven't seen my rheumatologist with results the staff doing the tests said they didn't find anything for me to worry about. I have noticed over the last couple of weeks I seem to be gaining weight and feel very bloated, I also find that after having a meal I would normally eat I get pains which feel as though thay go from my chest to my tummy. I am also off work and waiting to hear if they can find me a lighter job, good luck to them if they can find something that allows me not to lift, have limited use of my right arm/hand ,to rest my legs and have a nap when I feel tired! In truth I feel that work would be too much at the minute but people keep saying that I'm too young to give up work and it may make me down if I give up. I wish they could understand how I feel, they may change they're opinion! I always waffle when I get on here, sorry folks x Take care one and all x Thinking of you x
  8. Hi Amanda Thank for your reply, you're a star and I hope you know. I, for one, am very grateful for the time you spend replying to us and supporting other Sclero sufferers. Today's Rheumatology nurse day so I will ask lots of questions, Bye for now x
  9. Hi Everyone I have been away to France for a wonderful Sunny week. Where to be honest I did nothing except for rest,while my children played on the beach, eat and sight see. The Normandy beaches are fantastic, lots to see and do. I also noticed I had very little pain, the only thing that stopped me walking very much was lower back pain! Since coming back I have been doing the washing and sorting and climbing up and down stairs, I am now shattered and yes the pains are back! Any way, Something else is happening now, I am clicking! Mainly my fingers of my right hand but also elbows and knees. Can you tell me, is this normal! I also had a barium swallow and a heart scan yesterday, I was told at both that results will be sent to my consultant but nothing to worry about, sounded good to me. Other than these and blood tests I have only been given a chest xray, shouldn't I have a lung function test. I wish someone at the hospital would sit with me and talk about everything, all I get is comments about something being a little high but normal with my condition! Thank goodness for this forum its the only way I find anything out! I am seeing the sister from Rheumatology department about how to deal with raynaud's on Wednesday, if anyone can advise on any questions to ask I'd appreciate it. I've also got to see Occupational health Thursday, the same doctor that said he can't see much wrong with me! Don't I go on, brush everything I'm worrying about under the carpet until I start writing on here! Hope your all keeping well, fingers crossed for some good weather, (although not for Amanda and the hotties if it makes them poorly!!). Trish x
  10. trishtrub


    Hi all. Just wondered if anyone on the forum is from Wolverhampton area? x Trish x
  11. trishtrub


    Hi Everyone Just to say I have been to see my consultant and he's started doing tests for my base line. I've had more bloods done and a chest xray so far other tests will be coming through shortly. He's given me Adalat (nifedipine/procardia) tablets, Hydroxychloroquine sulphate (plaquenil) and Lansoprazole capsules! I'll be rattling at this rate! I asked if I needed any life style changes and he said just make sure I keep warm! At least I now know whats wrong with me and am being monitored so thats got to be good. Take Care x Catch up soon x
  12. trishtrub


    Hi Everyone Just a little update. I received a copy of a letter being sent from the doctor, who is an Occ health locum, that I have mentioned above!. I am not a happy cookie! He as said that I have been complaining of generalised aches and pains and fatigue for a few years (wrong, I said I started with back pain last November, when I was first off work!). He then goes on to say that he is unable to identify any major problems with muscles or joints but that he as written to rheumatologist for further information on my condition and that it seems that some tests show that there might be a problem. He only checked my hands, checked my grip, told me I dont have Scleroderma and that there aren't many other jobs available if I can't go back to mine! How can he make any comments on my health when he as no records or test results in front of him, the way he's worded it makes it sound like I'm making it up! Its a good job the staff at work have seen me struggling and have said I have slowed down dramatically in the last few months! I feel sick now because some days when I'm not feeling too bad I feel like a fraud myself! I'm not a lazy person and want to go back to work but really need something where I'm not lifting and up and down all day! Sorry folks, miserable message today, Take care x Love and best wishes to all x Just answered my door and some beautiful flowers have been delivered from two special friends at work x Just what I needed, thanks girls xx:-)
  13. trishtrub


    Hi Again Thank you for your replies, I will definately rest when I'm tired. To be fair the same doctor told me I don't have Scleroderma, I have CREST, I couldn't be bothered to try to explain Limited and Diffuse to him!! I am seeing a Rheumatologist next week who specialises in connective tissue disorders amongst other things. Hopefully things will be more clear after he as given me the tests I need. I just wanted to check if its normal to have different pains all the time! Today my hands, elbows, wrists and fingers are hurting. Yesterday my back was the worst. I tried to go for a walk with my beautiful nine year old daughter but was walking so slow she was cracking jokes about the snow coming at this rate, meaning the winter would be here by the end of our walk! Anyway hope everyone having a good day x Take care x
  14. trishtrub


    Hi Everyone :) Just wanted to say thanks for this site and everyone who posts their stories. I'm forty years old with a wonderful husband and two lovely children. I was suffering with back pain from about October last year, which led to me having three months off work and some physio which didn't seem to help! Since going back to work I noticed I was feeling very weak especially in my right arm and pain in my right hand, I thought I may have Carpal Tunnel! Also my Raynaud's seemed to get very bad, shopping was a nightmare as soon as I entered the cool areas my fingers went white, and this would happen if it was a bit cold outside three or four times a day! I also seem to have a lot of aches and pains in my joints and muscles. I have a lovely doctor who sent my bloods away and the tests came back showing CREST. I was fine until I started reading up on some of the internet sites and then got myself into a bit of a state! I paid privately to see a consultant and am going to have some more tests to find a base line for this condition next week. I am much calmer now and find reading this site very helpful, I know I'm not imagining things when others feel the same! One thing that bothers me is the tiredness, some days I just go back to bed for an hour or so which my general practitioner says is what I should do, but a doctor I saw at occupational health last week, (I'm off work, again, because my job is very heavy and I feel I may need something else), said the worst thing I can do is rest! Some advice would be good. Haven't I gone on! That's that off my chest! Love and best wishes to all x
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