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JaneLesley

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Everything posted by JaneLesley

  1. Thank you both so very much for your support. I have already popped into the Pity Party and had a good laugh - thank you. My Cousin, who is currently suffering from extreme problems with a different autoimmune disease has suggested that there is probably a gap in the market and we should set up our own 'autoimmune disco' - with lots of gym crash mats to catch us when we fall, plus a couple of strong good looking bouncers to pick us up again. We would need to hold it early in the evening, so we can all get to bed nice and early!!!! Might even start crocheting nice warm disco gloves - oh the ideas are endless.
  2. Hi, my name is Jane. I was diagnosed with CREST in 2010, although have had major symptoms since 2000. Last year I was diagnosed with Pulmonary Fibrosis, Pulmonary Hypertension and Diabetes. Metformin and Mycophenolate caused sickness and extreme fatigue / depression and I spent nearly all of last year in bed or on my sofa feeling dreadful. Almost all medication causes gallbladder, liver and / or spleen infections and I have stopped taking all. My hands are like very fat sausages, skin thickening, not fluid. I have been told there is no joint issues, JUST skin thickening. I have extreme Raynauds, some deep pitting at the moment but thankfully no ulcers. Also Hyperkerotosis which also causes pain. My right hand is curled badly, my index and middle fingers do not bend. I have pain in my hands and feet all the time. Cutting food causes ulcers on my knuckles. My left hip is very very stiff, I cannot bend forward, have trouble walking, my left leg regularly just gives out. My oxygen exchange dropped from 89% to 60% in just three years, steps/stairs and slopes make me very breathless and at times near the point of collapse. I also have IBS, a Hiatus Hernia, Sjorgrens Syndrome and Telangectasia. I have days when I cannot shower, cannot hold a hairdryer, house work is all but impossible, as is ironing. My house is a mess and I hate it. I cannot touch type any more and have not been to work for 15 months – fatigue, inability to type, or get up the stairs to my desk and problems with the one hour drive to work all added to my inability to get there. My Rheumatic Consultant, Heart and Lung Consultants are all based in Bath (a 3 hour drive), so visits are limited. They are all very good and all tell me my problems are MILD. Funny thing is they don’t feel mild when all put together. Last August it was suggested I attend a Pain Management Clinic at my main hospital (one hour drive). It took until December to be accepted and two weeks ago before my first appointment. After two sessions of acupuncture I was in unbelievable pain and have had to stop. Yesterday I attended a Pain Management Physio session. I had a 30 minute instruction on how pain is caused, pain receptors etc and was then told the best thing to do would be to go for long walks or go out dancing with friends. (Where does a 52 year old breathless diabetic with walking stick and two wrist braces go clubbing??). Another suggestion was to stop focussing on my pain and read a book!! I am so grateful that my Husband is very supportive, especially when confronted with health experts who do not seem to listen to my concerns and problems. I am awaiting a sleep test, I wake up gasping for breath and am also have a future appointment to see a Diabetic Consultant as I cannot tolerate any diabetic meds. I feel very alone and, as in the case yesterday, made to feel that I am somehow doing all these things to myself. Is there anyone out there who understands? Jane
  3. Hi Jean So sorry to hear of your problems. I have no idea if this is of any help to you - I purchased an orthopedic pillow - it is an upside down 'v' shape. I put it on top of my usual three pillows and find I can get very comfortable without any neck problems and am having much better night sleeps that I have had in years. I have had no coughing since I started using this pillow and although I do still get bouts of reflux / hiatus pain - I do think things have improved quite dramatically. The pillows can be purchased quite cheaply and even have bespoke pillowcases. Wishing you well (and a good nights sleep) Jane
  4. Oh Amanda I was going to say that the NHS is obviously better at your side of the Country - one nurse per ulcer - but now I read you have five ulcers -one nurse missing - must be the cut-backs! Seriously I really hope you start to heal very soon. New doctors, new medication and new ulcers - I quite literally would not wish to be in your shoes. You sound like you need a holiday from Scleroderma - I wish I could grant it. Sending lots of healing wishes Jane
  5. Hello, You will all be very pleased to hear that I will not be complaining about the consultant at my local hospital any longer - hurray I hear you cry. We have had a major falling out and he has 'removed' me from his list. I will now be looked after totally by the Bath Hospital where I know people talk sense! Shared treatment sounded a good idea but I think Bath thought my local consultant was looking after me and my local consultant ... well I guess he just didn't think at all!! This is it in a nutshell: Phone consultant as concerned about condition - make an appointment - sit in waiting room for 3 hours - seen by a registrar who says you need treatment - treatment has to be approved by consultant who says 'she doesn't need it' ... I phone and ask why- consultant says make an appointment - sit in waiting room for 3 hours - get seen by a different registrar who says you need treatment - but treatment not forthcoming - phone consultant - make an appointment .... are you getting the picture. I won't go into great detail about the rudest hospital secretary I have ever come across who told me that I should be grateful to get seen by anyone if I have to go through the NHS - oh and yes we are a drain on resources (although not sure who 'we' are!)! I am free from all this lunacy - I am feeling so much better just by removing all this stress. I am looking forward to my third 'introduction to scleroderma workshop' at Bath in July - more people talking sense - can't wait! My main concern at the moment is that I am sporting a rather amazing olive coloured tan (all over bar my knees down to my feet which are pure white). I am constantly being asked where I went away on my holiday - have not been anywhere and am wrapped up with long sleeves and gloves outdoors - especially since this breeze started several weeks ago. Has anyone else changed colour? Two colleagues have just told me they have never seem me looking so healthy - what tanning lotion am I using! Advice on this new change would be much appreciated. Warm wishes to all - yours consultant free..... Jane
  6. Hi, I am in need of some help please - I was diognosed in 2010 after 9 years of hand and feet swelling, etc, etc, etc, but although my care is being shared by two different hospitals, I believe this is causing confusion and although I am requesting treatment - I am not receiving any! Is anyone able to tell me what these symptoms might be if they are not Limited Sclerosis? Face - the skin across my cheeks is pulled very tight (I moisturise several times daily to make it more comfortable), the only wrinkles on my face are a few on my upper lip (I am about to turn 50). My lips are now just thin lines only a few mm's deep and I cannot open my mouth wide. I do have sjorgrens (confirmed). I experience quite a lot of numbing across my cheeks. My Consultant says I do not have any facial scleroderma involvement. The Consultant confirms my hands have scleroderma involvement! After a shower (and leg shave!) I have a diagonal line on the front of each leg. Above the line the skin is matt, below the line the skin is very shiny. My ankles are almost permanently swollen and painful. My toes are like glossy sausages with extra swelling at the joint where it meets the foot. My smaller toes are curled under - the larger toes actually point in an upward direction but I think that is because I am in pain and do not put my toes down when walking. I walk very badly and have major problems especially with stairs. My Consultant says I do not have any scleroderma foot involvement. I have had IBS since 1996, I have also had constipation since that time. I have had a stomach blockage, I have gastritis, I have a hiatus hernia and I have amazing reflux that keeps me awake - mainly because of the uncontrollable popping sound at the back of my throat that is often continuous for hours and something I haven't found a way of controlling! My Consultant says no scleroderma stomach involvement. I receive help from the OT department with my hands but they are not able to help me with any other symptoms because my Consultant says I don't have any other problems! He says because it is 'Limited' Sclerosis. All the above are very obvious things to see, so at least I know they are not in my head, but am I interpreting these things as Scleroderma when they are not - heavens what are you all going through if the things I have listed above are 'nothing'. I have numerous other symptoms and swellings, dreadful fatigue and lots of joint pain - housemaids knees and golfers elbows but most of all at the moment I am suffering from frustration and confusion. Please if you have any of these symptoms - what does your Consultant say they are? My sincere apologies for having a moan but I do not know where else to turn. Best wishes to you all Jane
  7. Many thanks for your kind comments. I have golfers elbows because I have had so much difficulty using my hands that I have been over compensating by using muscles higher up around my elbows. Oh and yes I have also got knee issues too because I am walking badly - toes and feet are painful - not sure this is called housemaids knee but the physio is going to have a go at that area as well - think they are going to have their work cut out here!! I can't wait to tell my husband how much more we have saved by not having a housemaid - although I have to confess cleaning in my house at the moment is running at a bit of a minimum! It is done on a need to do basis. Am going to take the 'spoons' article with me on my first visit - hoping that will explain a bit before we start. Will keep posting on how I get on - it may be useful to someone else. Wish me luck. Very best wishes to everyone - have been looking at snowdrops this morning and felt a great lift that may be spring is a little on it's way - let's hope so. Jane
  8. Hi, Went to see my fourth different Rheumatologist in a year and, like every visit, came out with another set of long names to add to my list of symptoms / complaints. This time I have got 'Golfers Elbows' (yes plural). Having never played golf - just think how much money I have saved on not buying golf clubs, and not paying green fees, memberships etc etc - yes back to that feeling lucky again! I am going to see a physio in the hope of some help but am worried I may be expected to use more spoons that I have at the moment - just getting to and from the hospital is taxing. Has anyone else found some benefit from physiotherapy? I would love to hear if you have. Anyway - hope you are all managing to save lots of money like me in this economic climate. Best wishes to all Regards, Jane
  9. I am so sorry you started your day badly but hopefully a good rest has done you the world of good - very good warning about day time tv though - beware - did that a couple of weeks ago - wept through every movie I could find - went back to work with dreadful swollen eyes - everyone told me how awful I looked - didn't have the nerve to say it was just bad movies and not my illness! Better luck tomorrow morning. Best wishes Jane
  10. Jeannie, I have unfortunately also been out of action for a couple of weeks so missed your initial post - so a bit belated but I really hope you are feeling so very much better. My mum gave me a silver spoon wind chime as a gift - I love its sound - haven't noticed them working as 'spare spoons' yet but who knows! Tawanda - I had abdominal migraine from the age of 4 - stress of school started it and it occurred regularly on a Sunday evening - triggered nerves for return to school on a Monday. No great comfort to you or your daughter at the moment but I did eventually grow out of it - hope you both get some help with that problem - you both can do without repeated episodes. Having been out of action for a week and just returning to the 'real' world my father had a heart attack - he is doing fine but it really knocked me for six. Stress really is a big issue for us isn't it. However on a much more positive note (I am trying) our weather in the South West of the UK is certainly improving - small bulbs are starting to sprout, so hopefully this will give us all a lift that we appear to be needing. I wish everyone well. Regards, Jane
  11. Jean, I am so sorry to hear that you are suffering so much and not getting the deserved sympathy and attention you really do need. I hope you will keep posting - everyone here is really kind and I know when things get bad there is always someone with a useful tip or some kind words just when you need it the most. I have just spent a further two days off work feeling awful - painful feet, hands and neuralgia to go with it. Guess that is the price for being lucky isn't it!! Somehow I think I would probably have preferred to have won the lottery though! Take care - and keep posting Jane
  12. I cannot tell you how grateful I am for this forum and the comfort I receive from it. I am currently suffering from very swollen tight fingers with lots of pitting - fingers are sore, swollen wrists and forearms. My face is stretched very tightly and slightly puffy making my left eye in particular very uncomfortable. My ankles and feet are swollen. My toes hurt. Everything is aching and on Sunday it took me all day to get washed and dressed. I felt so exhausted the smallest task became impossible. I attended my weekly hand clinic at hospital yesterday and after my treatment was asked to attend an assessment with a senior member of the OT department. My hands are the only thing receiving any attention and when I started to explain about my other problems was told that I was very lucky that I had Limited Scleroderma and not the proper version! I know we are mean't to try to educate people as we go along but I was totally at a loss for words, gave up any form of discussion and left. Is anyone else out there feeling as lucky as I am? Very warm hugs to all - and thank you for being out there. Jane
  13. JudyT Thank you for posting the item about making wheat bags - I am sitting cuddled up today with my purchased hot bag as we speak. Am going to make some nice new bags over the weekend and can leave them at work, as well as my parents house - just in case I need one. Many thanks Jane
  14. Hi, Having read so many stories about inappropriate or unhelpful comments made by some staff in the medical profession, I thought I would let you know about some help that came my way on Sunday. I am experiencing extreme problems with my hands at the moment and whilst paying for an item spotted reasonably priced wheat bags for sale. I had the most wonderful conversation with the gentleman behind the counter, he showed me some different shaped bags available, he explained in detail which parts of the body are best suited to different styles. He explained all about the health benefits and we discussed swellings and pain. He even helped me to chose the colour - some he said show dirt more than others!! I left the shop feeling that someone had understood my problems and had offered some help. I felt very grateful for this. Well where did I shop you may ask - no it wasn't in a pharmacy or my local Surgery or Hospital - I was in fact paying for petrol at my local filling station! Help can be found in strange places, you just never know when you are going to stumble across it. Warm hugs to one and all Jane
  15. Part of my job is to shop once a week at the local supermarket, purchasing bosses lunch, toilet rolls, gallons of milk etc. Throughout the summer I wore my gloves outdoors constantly, my Raynaud's appears to be worse in the summer!! Therefore I wore my gloves into the supermarket every week. Sometimes I got an odd look but no one ever made a comment. We arrive into October and I am now feeling more comfortable, gloves and scarves start appearing, I am no longer the odd one out. The Friday before Halloween I shopped as usual and as usual wore my gloves. The assistant working on the till looked at my gloves with every item she scanned, the fourth item it obviously become too much for her and she asked "why are you wearing gloves, it's not cold out" When I replied that I feel the cold and need to protect my hands, she gave what can only be described as 'an old fashioned look! Now I know you are all yelling we all wear our gloves and we all get comments and questions from others. However, I can only assume this shop assistant had forgotten what she had put on that morning for work. As I said above, it was the Friday before Halloween, I was being served by a lady in a tall black pointed hat, a lovely full length black cloak and yes a painted blue face. I am so pleased my gloves stood out in this crowd - and at the end of October!! Funny World isn't it! So, please stay warm, keep wearing your gloves and other nice warm items, blue hands are one thing, but just remember, there are people out there with blue faces!! Jane
  16. Hi Jeni, I am very fortunate in being able to attend a Hand Clinic at our local hospital every Monday morning - there are a few gadgets which allows some gentle stretches but the main reason for attending is the hand massage from an Occupational Therapist. I struggled at the beginning with swelling almost immediately after but now after 3 months really look forward to the relief this massage brings. I would love to find someone to bring the same relief to my feet - they don't have a foot clinic at hospital unfortunately and I am quite sure my boss wouldn't be too keen on me running out of the office every day for massage!! If you try the hot stone massage let us know how you get on. Hope it brings you some relief. Best wishes to you Jane
  17. Hi, I attended an Introduction to Scleroderma Workshop at the Rheumatology Hospital Bath a couple of weeks ago which was run by Sue Brown. It was a wonderful opportunity to meet other Scleroderma sufferers and to discuss some of the problems we have been experiencing and exchange good ideas. I can't wait for Part 2 in November. At the meeting stomach problems and probiotic tablets were discussed. At the end of the Workshop I purchased a bottle of probiotic tablets. After two weeks I have no more bloating and I feel so very very much better. My hands and feet are incredibly swollen at the moment but just removing one symptom means the others are somehow easier to deal with. I wanted to say a VERY BIG THANK YOU to everyone at the Workshop for putting me onto a simple but effective solution - I want to shout it from the roof tops. My best wishes to everyone. Jane
  18. Hello, I am so very sorry to hear about the problems you are experiencing. From the responses you already have received you are going to have a lot to take in but I wanted to let you know that I started on Plaquenil back in January and within weeks experienced my first bowel incontinance. I found that once the cramps started I had a maximum of 6 minutes to get to the nearest bathroom and very regularly didn't make it. I stopped taking Plaquenil eight weeks ago and have to say that I am feeling oh so much better and have not had a stomach attack since. I have had IBS since 1996 but taking the Plaquenil took this to a whole new level. A place I do not wish to visit again. I work full time and travel an hour each way to work - I often had to go home, clean up and start out again - not easy to explain why you are so very late for work!! I was obviously fortunate in finding a quick solution to my problem - I sincerely hope you are able to do so as easily. My very best wishes to you. Jane
  19. Having read Chockers posting on running to the loo I thought I would share my wedding anniversary experience with the Forum - I think you are the only people who will actually understand this kind of embarrassment! Our first wedding anniversary and my husband offered to take me out for the day - no elderly parents, no step children - just the two of us - an unusual occurance - so lovely. We got up before 6am and drove up to North Devon. The sun was out as we left and sporting my new hair do, I dressed in my new cotton skirt and best sandals. After a short stop for breakfast (possibly my downfall) we started to drive across Exmoor. The clouds closed in, it poured with rain and you could barely see through the thick mist! It was at this moment that stomach cramp hit, we were miles from anywhere. A few moments later I knew I had to get out of the car and fast. My husband pulled the car over by a gate - I managed in my own creaky way to climb it and found a discreet place to hide. My husband who has immense patience with me threw a pot of wet wipes at me and stood guard! I am now in a field, it is raining and I am up to my ankles in mud. I am attempting to tidy myself up when I suddenly feel the ground vibrating - my husband is yelling at me to get a move on when several horses - riders dressed in red coats and an awful lot of hounds come over the brow of the hill in the field I was standing in. Yes the entire hunt is now heading towards me. I leap the gate like an olympic athelete and much to my accute embarrassment find that the road is blocked by lots vehicles that have been following the hunt. After an awful lot of effort on my husbands part we manage to get the car out and drive off. My newly styled hair now plastered to my head, my eye makeup is running down my face, my skirt and sandals covered in mud and dripping - what did we do - we started to laugh. It was only at this point that I looked down at the pot of wet wipes my husband had thrown at me and realised that they were in fact for removing grease and oil from car mechanics hands - certainly not for delicate places. You will be pleased to hear that I didn't suffer from acid burn but it is a lesson well learnt and now I carry a small bag of emergency items on every journey we make. Although Hopefully not one like this to be repeated. Certainly a wedding anniversary not to be forgotten. Best wishes to everyone. Regards, Jane
  20. Hello, Thank you so much for posting the spoons article. I gave a copy to my close work colleagues yesterday - we are already talking in terms of spoons. I think this is going to be really helpful for the future when I am trying to signal I need some help without making a great fuss in front of others at work. "I've lost all my spoons" is going to sound a lot better than "I am about to collapse to the floor" especially when we have visitors in the office!! Thank you once again. Best wishes Jane
  21. Thank you both so much for your advice. I have contacted the Local Hospital Specialist Nurse has in turn forwarded my concerns to Mr Rheumatologist who is returning on Monday - hopefully he will come up with a logical answer!! Will let you know. Once again many thanks for your support - it really is so very much appreciated. Best wishes Jane
  22. Hello, I work full time but felt like I had hit a massive brick wall on Monday morning. I just managed the bathroom and back to bed. I have slept for days. My left eyebrow has been swollen for about 5 months and the swelling has moved to my temple and down across my left cheek - also going into my hair line above my ear. I hate a breeze blowing across my face because one half of my face feels very different from the other. My swollen temple also pushes against the arm of my glasses - none of this is painful it just feels uncomfortable. However the swelling has obviously moved on towards my ear and whilst hitting this brick wall of exhaustion, I have also become very hard of hearing in my left ear. Has anyone else experienced this? I visited a locum general practitioner who confirmed I have not got any kind of infection or blockage but did not know what else to tell me. I am back to work today - a necessity - my arms and legs are made of lead and I can't hear properly - would dearly love some reassurance. Kind regards Jane
  23. Oh wow what a worrying time for you - get packing your bags quick and get to a doctor who listens. I have the opposite problem to you, I have a rheumatologist who confirms I have Limited Scleroderma (bloods confirm it) but says that all my joint pains, stomach problems and even the swollen side of my face, etc. are not connected to scleroderma because there is no skin involvement in these areas (when he pinches my skin there are still wrinkles)!! Bet your man didn't try that one did he! Hope you get some good results soon from someone who will truly listen to you - and if all fails get your doctor to pinch you - obviously a tried and tested method of diagnosis! My very best wishes to you. Jane
  24. Amanda, Very many thanks for your kind words of wisdom - I have a referral to Bath (one of the names on your list) for October so hopefully I can go armed with my list and thanks to you I won't feel silly bringing up so many various complaints. I nearly said fingers crossed but being as they are not moving today am going to have to find something else to cross instead! Once again, very many thanks. Jane
  25. Hello, Is anyone else in the position I am at the moment? I was diognosed with Limited Scleroderma in January of this year but have had amongst other things hand problems since 2000. Back in '97 I developed IBS and throughout the last 13 years I have had all the tests available cameras up and down, barium up and down, scans and even key hole surgery. In '08 I was told I also had IBS of the upper stomach, as well as gastritis, a hiatus hernia and severe reflux. My Rheumatologist has just told me that these stomach problems are not a symptom of Scleroderma and he is therefore unable to help me! When is IBS a symptom of Scleroderma and when is it not? I also suffer from very painful joints - ankles, knees and elbows in particular - they swell up at the same time as my hands and wrists - I have been told there is no skin involvement at these particular joints and so this is also not a symptom of Scleroderma! Having read various symptoms associated with Scleroderma on this site and also various questions asked at this Forum, I am now a bit confused as to what actually is and isn't a symptom. I am still suffering and am not getting any help with these problems. Has anyone else had this kind of non-diognosis? I would be very grateful for any advice on offer. Warm wishes to you all Jane
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