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JaneLesley

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About JaneLesley

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  1. In Pain, Feeling Confused and Alone

    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. Query on Medication

    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. Tissue viability nurse and local group meeting...

    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. No more moaning

    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. Another Symptom but Saved Money!

    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. Hello Wardrobe

    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. Whine~ Spoons are Tarnished and Ruined!

    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. Lost for Words

    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. Lost for Words

    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. Local Help is Forthcoming

    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. Local Help is Forthcoming

    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
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