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Lil Dee

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About Lil Dee

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    Senior Bronze Member

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    Manchester UK
  1. Hi Marsha, I agree with Amanda's comment regarding Plaquenil (also known as Hydroxychloroquine) I have been on plaquenil for a few years now, and I find it has helped the fatigue and the pain in my joints. For the Raynauds, I have been put onto medication that would normally be used for people with high blood pressure. The reason for this, is that things like Amlodipine, Lansoprazole and others, act as vasodilators - which means they increase the diameter of your blood vessels, allowing more blood to get to the extremities, which hopefully reduces the effects of Raynauds. Having been in hospital for a stay a couple of years ago due to my Raynauds, I now work very hard at preventing the cold from getting to my hands - prevention so much is better than "cure" with Raynauds. If you can get hold of any type of hand warmer, then do so - and use them regularly. I have disposable hand warmers, two electronic hand warmers and LOTS of gloves/mittens and assorted arm warmers to go with them ! I hope this information helps. LD x
  2. Hi Jac, Sorry to hear you're having such a traumatic time with the diagnosis and the treatment at the hospital. I can only imagine just how alone and vulnerable you have been feeling Well, you have found the best place for support, help and advice, and very gentle, warming hugs whenever they are required ! :emoticon-hug: Hopefully, now they have a confirmed diagnosis of SSc, they should be able to help with some of the weird and wonderful symptoms that come along with it. Please don't think that each visit to the hospital will be the same, if you can stay calm, and explain about your concerns - maybe with the nurses before you go in to see the doctor - you can get your feelings and worries about examinations highlighted before they ask ? What part of the UK are you located in ? Maybe you can look at getting referred to a specialist (Joelf has given you a link to the UK specialists in her post above) and ask on here about the clinic etc. before you go - so you will have an idea as to what to expect before you attend ? I know I'd be happy to share my experiences with my specialist in Manchester. Good look with the additional tests that are coming your way, and remember, you are not alone in this !
  3. Lil Dee


    This is a subject very close to my heart. I have been suffering with Achilles Tendonitis for about two years now, and have almost continually been taking pain relief. I also injured my back/neck back in Sept. 2009, and go for physio for either ailment reasonably regularly, to help manage the pain too. My rheumatologist knows I'm taking the pain relief including ibuprofen, and they've never said anything about my taking them, though I am on Lansoparazole (PPI) to help protect my stomach, so I wonder if they're happy that I don't complain about stomach issues? I have recently been thinking about asking to change over to Naproxen, and after speaking to my pharamcist (very nice lady!) I may well ask my general practitioner about this. Apparently they have done a study of Naproxen recently, which has proven it to be as effective as Dicolfenac, but with far less issues (as Amanda mentioned, the bleeding issues have been identified in many people taking Diclofenac). RubyDo - I hope you get to enjoy your rats - the domestic ones are supposed to be very good pets, and quite intelligent too. If they smell, make the kids clean them out more - they wanted them !! (Yeah, I know, good luck with that one!)
  4. Lil Dee


    Hi there Allyrob, Welcome to the best place for understanding support and lots and lots of information about this very complex and confusing condition. I do think that asking to be referred to a Scleroderma specialist really is the best thing you can do. I have been seeing a Rhuemotologist for about three years now, and I have just gotten to the point where I was going to ask for the referral to a specialist.....I think we were on the same wave length as my rheumatologist has also decided to refer me to a specialist when I went to see him this week. I came to the conclusion that I needed to see a Scleroderma specialist when I was admitted to hospital recently (due to a Raynauds issue that required an Iloprost infusion for 5 days) and spoke to a lady who had a special interest in Systemic Sclerosis. I learnt more from her in ten minutes, than I have from my rheumatologist doctor in the three years he's been treating me. :rolleyes: Please do not hesitate to ask questions about anything, there are so many people that hang around here, someone will be able to give you some kind of answer/information to help you. I find it quite comforting to come here, and speak to people who know what I'm going through.....there's not many in the real world that do ! And we all love a hug from time to time :emoticon-hug:
  5. Ohhhh, Susie, I like the velcro hot water bottle idea too - that way you never forget to pick it up and take it with you ! Jo / Amanda, yes, we do have the usual struggles on our office with people being hot and cold at the same time - we find that simply sitting three feet to the right can mean you are freezing compared to your colleague. So much for air conditioning, eh !? Snowbird - I only WISH our H&S laws were as commons sense as yours. Sounds like you have the exact same fan heater that I do, that they refused to allow me to use. Yup - red tape gone mad !! Still, I'm going to see my OH lady at work, and my union man reckons that I've got a pretty good case to request the heated mouse and mouse mat at the minimum as "reasonable adjustments" for my work place, so let's hope they turn out to be decent pieces of kit. Of course, I'll come back and let you peeps know, as I'm sure I'm not the only one having issues like this.
  6. Shhhhhhh......I wasn't going to mention this bit, as I was hoping that there might be someone out there who is the exception to the rule !! I ended up with four cannula sites over five days, with a number of unsuccessful attempts in-between. Lizzie's comment that the nurses are better at doing the cannulation than the doctors is quite correct - they are by FAR the more experienced in this procedure. However, at the Royal Free, I suspect that cannulation is a day to day part of the routine for most of the staff......unlike the general ward I found myself on !
  7. My office is cold yes. My problem is that due to our wonderful :rolleyes: Health & Safety regulations, I am not allowed to have a fan heater. I work in a large three storey office block, and in our area (Ground Floor) we regularly complain that the temperature is too low. On the second floor however, it's always too hot - Air Conditioning !?!? PAH ! So I figured if I can find out if these heated mice, and other options, are worthwhile investing in, I'll take a look. I'm currently sat here with my porridge, my gloves and wrist warmers on (not easy to type!) and my electric hot water bottle....and I'm still having to stop every couple of minutes to warm my hands properly. Here, Gis a hug !! :emoticon-hug:
  8. Hi Sue, Thought I'd give you a pleasant(-ish) report on Iloprost infusions - well, as much as I can, considering I was stuck in hospital for five days !!! I ended up on the Iloprost for 24 hours, for the full 5 days. I too have low blood pressure (no amount of smoking, drinking and eating of salty food in my early years seems to have had any affect on this !!) so was wary of being plugged into the infusion. The nurses on the first ward (long story) were very good - as I'm sure will the ladies and gents at the Royal Free - and checked we were trundling along according to schedule, with no ill effects.....except for the requirement to have my blood pressure checked - Which meant very little sleep, as the automated blood pressure check kicked in every 15 minutes :( on the first night. Apart from an initial headache which was mild, and we eventually figured this was actually caused by the lighting and not the Iloprost. The dosage was increased on a couple of occasions, but I personally never felt any side-effects at all - I know - VERY lucky !! All in all, my biggest issues were : 1 Inability to wash properly - as I was connected to the infustion 24/7 2 Lack of sleep due to two hourly blood pressure checks 3 My dropping blood pressure when sleeping The blood pressure drop was the most amusing "issue" as the ward I started out on were used to this sort of thing, and were happy as long as I wasn't feeling dizzy/headachey etc. When I was moved to the main ward, the nurses would visibly panic :wacko: and I even had one call the doctor on call....... BUT the main reason for this post.....I had no side effects, no headaches, no sickness. Nothing. However, I am still struggling with my Raynauds. One finger in particular is really struggling to stay anything resembling a healthy colour (blue/purple/white are all favorites !!) So, please don't think it's all doom and gloom Sue - but do take some good books, plenty of drinks (I drink a lot of fizzy water, so my husband was ferrying in several bottles a day for me!) and maybe some decent biccies to chomp on whilst you're sat there attached to the infustion. I wish you all the very best, and hope you have as easy a time as I did
  9. Hi All, Well, after having a little scare with my Raynauds, and a short spell in hospital, I'm not taking my Raynauds a little more seriously than I had previously. In line with this, I am looking at options to keep my hands warm, especially at work (at home, I can use a hot water bottle - easy!). I work as part of an IT Support team, and as such, I am sat at a desk for most of the day, using a mouse and keyboard. My biggest issue is keeping my hands warm whilst working. Yes, I can take my hand away from the keyboard/mouse to warm it up - but this affects my work - I can't work whilst I'm trying to warm my hands up (at least, not efficiently). I would be really grateful if anyone has any information/feedback on things like : Heated Mice Heated Mouse Mat Heated Arm Rest/Support Heated Keyboard I've had a little look-see around the internet, but as I am UK based, I think I may struggle to find anything here, as all I seem to find are links to US websites. Thanks for reading, and here's hoping one of you knows something about these heated pieces of IT equipment - which I'm hoping will be the saving of my fingers - literally !! Take care out there LD x [Moderator Note....if you have the actual details of any products, please send them to Lil Dee via a PM. Thanks!]
  10. Well, what an eventful week. I went to see my general practitioner, who contacted my Consultants office, who contacted me, asking to see me on Wednesday morning last week. So, I bobbed along for the appointment - the "bruises" I mentioned under my nail by the way, are "splinter hemorrhages" - only to be admitted to hospital there and then, for a five day Iloprost infusion !! :o Cue the chaos....I had left my PC at work all signed in, along with handbag on my desk (I just took the essentials with me to the hospital) so having given up several viles of blood, and having an ultrsound on my arms (they were being ultra-cautious, and wanted to ensure I didn't have an obstruction of any kind, as oppose to it being Raynaud's causing my finger issue) I then headed back to work, to grab my stuff and handover my work. Met hubby at home, grabbed a shower, some essentials (I've never been in hospital before, so had no idea what I did and didn't need!), then it was back to the hospital. I have been there until last night, when I was finally discharged. I have had a 24-hour, 5 day Iloprost infusion, which I'm hoping will help reduce the Raynauds. At the moment however, I've still got my hand sat on a hot water bottle, as my middle finger still refuses to warmup :glare: I have been very lucky, I have had no nasty side effects from the infusion at all, not even a headache !! However, my veins were my fall down, as they really struggled to insert a cannula, and for it to work for any length of time. Over five days, I've had four cannula sites (OUCH!) and my arms a little battered and bruised from the attempts made to find the four that we used. Still, I'm home now, and have time to get my strength back, before heading back to work. We've had to cancel a holiday, but have decided to keep the leave, so we can make sure I'm fully rested after my 2-hourly blood pressure checks (yes, even during the night !) I'm sure you can all relate to the fatigue I'm now suffering with!! Plus, it gives us some time together - I've missed my hubby :wub: and my two kitties very much whilst in hospital. Amanda/Patty, you comments regarding counselling have got me thinking. I did go for counselling a few years after losing my Mum, when I realised that I had a lot of anger surrounding her death (the rest of family is now completely estranged from each other) which helped, so I may consider seeking some support again - thank you for your positive comments surrounding this option. So, I'm now going to have a lay down, and catch up on some of that sleep I've been missing out on. Thank you all again for the support :emoticons-thankyou:
  11. :thank-you-2: Thank you all for your informative responses....and yes, Jo, I'm still hanging around these parts, though not posting quite as much (I'm in a 'down' mood at the moment, and combined with the fatigue, I don't feel much like doing anything other than sleeping - but I am consciously trying to work on that) The links you've posted are very interesting, and I've had a good nosey around and learnt quite a lot that will definately help me. I couldn't help but giggle though, when you all mentioned about keeping my core body temp. up - I have a fan on my desk at work, as I regularly "glow" due to overheating, and need it to keep me in check on many occasions these days. I do try and keep my hands/arms warm - I use gloves/mittens, and have a supply of disposable hand warmers which I use regularly. The reason I have posted about my Raynauds this time round, is because this one finger tip seems to be permanently cold, no matter what I do. I am cautious regarding medication, as I do already have low blood pressure (always have had), so the Nifedipine was a trial this winter to see if it helped or caused me additional issues. I'm already on Citalopram (an SSRI anti-depressant) which are supposed to help Raynauds, and those wonderful ladies at the salon have a Paraffin Wax treatment that I splurge on occassionally. Kaytee - your comments ring so true, about the skin getting hard around the nail edge, it results in my WORST habit - I bite round my nails......YUCK ! I will try and make a point of gently filing the "corners" every couple of days to see if that helps, and resist the temptation to bite the offending skin away (which my rheumatologist has already told me off about !) Hugs :emoticon-hug: to all of you out there in Cyber Land. You know, I don't come here nearly often enough.
  12. Hey guys/gals, I have for the last few months been on Nifedipine to try and ease my increasing Raynauds episodes. I live in the UK, and started taking it after my summer holiday last Septmber, in preparation for the winter on-slaught. *groan* The weather has been much kinder this year than the last couple, so in that sense I've been quite lucky as it's not been that cold outdoors. However, my Raynauds attacks don't seem to have diminished or eased in any way - in fact, I am currently typing with a purple tipped finger, which is just not responding to anything. OK, It's not bright purple, so I'm not panicking that it's going to fall off, but it is continuosly uncomfortable, cold and starting to worry me a little. Also, the nail bed on this finger seems to have a couple of "bruises" on it, very small, but very much there to see if you look, and also at the side of my nail, I have been struggling with what I can only describe as an in-growing nail issue. I have a professional manicure regularly, and the girls are very aware of my special needs (giggle) and don't touch my cuticles etc. and are very careful, and I'm sure they would have noticed.... Anyone got any advice for me - should I be doing anything to help my finger/hands (which are also very red, swollen and dry at the moment) I am being prescribed the Nifedipine by my general practitioner (on the Rheumatologist's recommendation) do you think I need to pester my rheumatologist earlier than scheduled, or should my general practitioner be able to help ? Thanks in advance to all you lovely people **HUGS**
  13. Well, ladies / gents, I set off to work today in rather nippy weather....my car said -9, which I believe converts to just about 16 degrees in your money !! :blink: My "Little Hotties" and my sheepskin mittens managed to keep me going til I got to the office, now all I have to do is make it home again !! Keep warm.
  14. I have found mittens are soooo much warmer than 'gloves', and now use large mittens, with the throw-away charcoal based hand warmers (they are enviro friendly !!) that I get from a local supermarket....that cost so much less than other companies (Mods - Is that too obvious !? Sorry if it is...) as I buy in bulk. I hear that one of the best natural fibres is Possom - New Zealand are currently over-run with this particular little creature. It was unfortunatly introduced to their country, and is now causing great concern due to it out-performing the indigenous animals. So, Possom fur is quite popular with them at the moment ! I personally can't comment, but if anyone has any experience ?! Keep watm ladies.....winters a-coming here in NW England. *Brrrrrrrr*
  15. I have had a couple of issues over the last year with an injury to my back, due to a fall at home last August '09. This required time off work, and a number of physio visits, and gradually got to a point where it was as good as I feel it's ever going to get. I have been having problems with my achilles recently, and due to this, have been walking at a strange angle - enough to cause the issues with my back again :rolleyes: I have contacted my physio (who I have no issue with, she was excellent) and she has a new machine, which she is hoping will help - especially with my Sclero complications. She mentioned that she now suspects my Sclero was the reason for the lengthy recovery time of my original injury, and the machine will speed this up substantially for me this time. I was wondering if anyone has heard of this machine at all ? I have found some info on the wonderful world-wide-web, but it's either very vague, or way above my understanding!! Any comments from you guys/gals would be very welcome. ((HUGS)) LD x
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