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uknlv18

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Posts posted by uknlv18


  1. Hi Lynn,

     

    I do not have Vasculitis but I do have problems due to my Lichen Sclerosis and have been given different types of lubricants that have helped, as it is very painful for me to have intercourse. They also gave me Lidocaine, which was a bit pointless, no pain but I was completely numb and felt nothing. It does not seem that there are too many choices, at least my doctors don't know of any that help totally. In my case I have a very understanding husband and we do things a bit differently. We can still be intimate without causing me any pain, and that is wonderful for me as I still wish to share this with him if I can. Hopefully others may know of other things to use and I would be interested in them as well. As the supermarket add says Every little bit helps!

     

    Cheers

    Jean


  2. Welcome to the forums Marnie, and just to say that it is 4pm UK time for the Friday chat, well I think that is it, as it is MST of 10am so that would make it 4pm GMT unless it has changed from the postings that is!

     

    This is a great resource of information not only from the many files in the News and Medical section but from all the people who have lived with Sclero for many years and are more than happy to share their experiences and help others to understand what is going on with them better. Keep posting and look forward to getting to know you through the forums and hopefully see you in chat, if I remember I tend to remember about 5 mins before an hour after it has started so everyone is ready to go by then LOL

     

    Jean


  3. Thanks Amanda, I did get a result, I spoke with the connective tissue helpline nurse and she is getting me a rush appointment with the Sclero doctor. As she was surprised that they didn't make an effort to get the results, as that was the sole purpose of the appointment. So will just wait to get the appointment through the post.

     

    I am going to see the woman I saw the time before this time. I can't remember her name but she was very good with Sclero problems and usually one of the Consultants comes in at the end of the appointment to talk to me before I go. But I was told I can ask to see a specific doctor when you get your appointment, so I am going to do this for any future appointments. This is the second time I had someone who didn't have a clue, and it is very frustrating and frankly a waste of our time. I understand the registrars need to learn but if you don't get the back up from the Consultant and they don't know what to do with your problems what's the point?!

     

    I have put a complaint in to PALS about the appointment as well as the fact that the results were not sent to my doctor in a timely manner; three weeks should of been plenty of time for those results to get to them. The Echo I had was the day before the appointment and they had the results of it.

     

    Thanks again for everyone's kind comments and suggestions. Hopefully my breathing problems will be resolved soon!

     

    Cheers

    Jean


  4. Thanks Amanda, I didn't think about contacting PALS, I will go online and see if there is a way to do it there if not I will ring on Monday and get things started. I am trying to do a fall clean at the moment and having to stop every ten minutes because I feel like I have run a marathon and am going to pass out due to lack of oxygen. So something is definitely not right! I will persevere and be pushy and I appreciate all the support. Makes me think of things I should of thought of in the first place. My problem is I get angry and then I don't say anything because I am afraid what will come out, it comes from when I was a kid and got in trouble for speaking out when mad. You would think at 47 I would be over that by now!

     

    Cheers,

     

    Jean


  5. I had my follow up appointment with Rheumatology last week and boy am I disappointed! I got a Registrar who really didn't seem to know anything about my Scleroderma and other conditions. I was going to find out the results of my Pulmonary Function Test and other tests, and he couldn't find my results!

     

    I have been having a terrible time with breathing and that was the main reason they had me back, to see if the steroids were helping. I told him no they weren't and asked about some other problems I had recently started having, like frequent urination, I have to go every hour to hour and half like clock work, I'm not getting any sleep at night and I can go nowhere as I have to go to the bathroom. It isnt a bladder infection as I had this checked by my general practitioner. I was told well it is because I am a woman and these things just happen! I was shocked and more than a little angry. I asked about the pain I am having in my shins, knees and feet and he didn't have any idea why I would have them, probably just something to do with the Scleroderma. Usually after the Registrar sees me one of my Consultants come in to talk to me, but they weren't there this time.

     

    It was a complete waste of my time, and with the breathing he just said he would send a letter to my general practitioner when he found the results, hopefully I am still breathing by then! And I know already my general practitioner won't treat me for anything related to the Scleroderma, and if the test comes back okay, then I would like to know why I am having such a hard time breathing!

     

    It is sooo frustrating, you wait three months to see someone as it is and when you get there you get some person on a rotation that knows nothing about the condition. I go to a Sclero specialitst because I want to see someone that knows what they are talking about. Sigh sorry for the vent just so angry at the moment, as I know even though I asked for another appointment it will be a good three months before I see anyone.

     

    Cheers

    Jean


  6. I have four tattoos myself, and they were all done prior to having my Scleroderma diagnosis. But I did have the condition when the last one was done. I have been thinking of having something added to the last tattoo I had and asked about having it done. I was told that they do not recommend having them as the healing is slower and may cause problems. So I decided to just have the ones I have and not risk it. But I would imagine it depends on where you want it done and how well you heal, my only problem area for healing is my hands. But I love my tattoos and would probably think about having another one if I seem to be doing okay with the healing on other body areas.

     

    Cheers

    Jean


  7. Hi Mary,

     

    Welcome to the forums, you have gotten great advice and I can't add anything other than I had trouble breathing and acid reflux issues, and I ordered a wedge for pregnant women on line and it helps loads. My pillows always seemed to squirt out from under me, or they made me get a crick in my neck. The wedge does a gentle incline to about 4 inches, and it works a treat!

     

    Cheers,

     

    Jean


  8. Mine have all been spayed and neutered, wouldn't want to add to the already high population of animals out there. Although Dude still thinks he is a stud muffin. :VeryHappy: But he doesn't spray and that is definitelya plus!

     

    I am in the process of getting new furniture as they have redecorated all the old stuff, and not in a good way! Going to put aluminum foil on the arms for awhile when no one is coming to visit so they will hopefully use the scratching posts that they have instead.

     

    We thought about getting a dog awhile ago, I was always a dog person. But we just didn't have the time back then to properly take care of one. And now I don't think I could live through potty training and a puppy! Hehe.

     

    Jean


  9. My 4 were all rescue cats, I worked at a mental health place and they would get cats and the cats would get pregnant and I would help them out by taking the kittens and finding them homes. One invariably ended up having to stay in my home hehe

     

    I got Dinky, Dizzy, Gertie and Dude, well they have longer names than that, its Stinky Dinky, Dizzy Gillespie, Gertus Trudus Pestus (the roman cat!) and Newbie Dude :VeryHappy: Dinky is a tortous shell, Dizzy is all white with a few dark spots that got rubbed off in the wash, her tail is coloured, Gertie is my all black cat, and Dude is a VERY fat Ginger.

     

    They are my kids and keep me company throughout the day, and drive me nuts on many occasions! I would like to get another one, but am resisting the urge lol.

     

    The cats on my avatar are the closest to what each looks like.

     

    Jean


  10. Hi everyone

     

    My whole thing started with Morphea and Lichen Sclerosus, so I too have an overlap of illnesses. The morphea flares and fades, but never goes away completely. Moisturizer does not cure it up for me either. It is itchy when I get a flare, and the area swells up in my case as well. It is on my right wrist right over that little bone there, and when it flares I get the huge dent in my wrist, looks horrible.

     

    And welcome to all the new comers to the forums!

     

    Jean


  11. Hi Simone

    I have just been started on Prednisole and so far the good has out weighed the bad in my case. I have a LOT more energy than I have had in over a year, I no longer feel the need to stay in bed until 12 because I just can not get up. And then go lie down 2 to 3 hours after. My back doesn't hurt as much and all of the little aches and pains have faded away.

     

    On the down side I am more hyper on it than I was before, I get shakey and feel like I am coming out of my skin sometimes. And I have developed weird cramps in very strange places, mostly around my knees! And I am hungry all the time, and with me dieting and trying to lose weight, that is a bit difficult. I have stocked up on fruit and veg though so that I snack on that instead of bad things if I can.

     

    But all and all even though I take a handful of pills now and rattle when I walk, the steriods are helping more than they are hurting at the moment for me. And I am getting things done that would of been impossible before!

     

    I hope it all works out for you in the end and they get things under control. Welcome to the forums and I look forward to hearing how you are getting on!

     

    Jean


  12. Hi everyone,

     

    I havent posted in awhile, been trying to keep busy and not let myself get to down lately. I had my appointment with the Rheumatologists last week for my 3 month follow up, and the news was not good. Apparently things have kicked off so to speak. My breathing is getting pretty bad and my Raynaud's is worse even though it is warmer. I have developed strange painful patches on my legs that I thought were rashes or places where I bumped my legs. But per my doctor they are where my immune system has started to attack the skin there. They are worried now that I have heart involvement and have ordered me another Echo and also a PFT for the lungs.

     

    I have been put on steroids for the first time, Prednisolone is the name of it. They are starting me on oral ones for now and will see how it goes for 6 weeks. So far the only issue I have had with the steroids is that if I take them before eating anything in the morning, I end up with stomach spasms and I throw up a clear mucus like liquid. It is pretty weird as I do not feel sick before of after and once I get it all out then I am fine. So needless to say I eat something before taking them! And I seem to be hungry all the time, not helping with my dieting at all lol. But I have bought lots of fruit and veg to snack on so hopefully I will not get the weight gain issues so badly. It does seem to be helping with energy though, I am not as tired all the time now that I have been taking the steroids for a bit. And it does seem to be helping with the pain in my legs and joints as well, but my breathing is still pretty bad. I wanted to go to the gym and start swimming a couple of times a week, but Im afraid I will get out of breath and drown! hehe

     

    Im now on a double dose of my acid reflux medicine for a month to see if it helps me with that issue as well, if it doesn't I am going to ask them about that procedure I see lots of you have had, Nissen Fundilplication? and see if I can get that, it would be wonderful to not wake up with acid in my mouth most mornings.

     

    Well that is pretty much my update for now, I am off to bake some new bread recipes and make a new cheesecake recipe. I know not diet but I am in the baking mood lately hehe. Hope everyone else is doing well.

     

    Cheers

    Jean


  13. Hi Lynn,

     

    I get sores in my mouth and tongue but they are not caused by the toothpaste. I do however have a lot of trouble with the mintiness of the toothpaste and have to go for flavours that are not to strong. My grandfather used to only brush his teeth with baking soda or bicarbonite of soda for the UK peeps hehe. He had all but one of his teeth when he died so it must of done something for him. The taste is a bit to get past for me though! Best of luck with finding something that helps and I hope you get relief soon.

     

    Cheers

    Jean


  14. Hi Annie,

     

    I have botox injections around my right eye, as I have an overactive nerve there and it causes my face to spasm. More annoying than anything else, and I wink at people and they look at me funny hehe. I have been getting the injections for about 6 years now, it does wonders for my problem as it stops my nerve from causing my face to spasm and it does not do anything else, and my muscles move fine. Not sure how it would work for your hands and circulation though, I understand that it basically destroys or freezes the muscles. That is why it is good for wrinkles as it prevents your muscles from causing the wrinkles. I told my doctor I wanted some shots in my left eye as well, otherwise I am going to be as smooth as a baby's bottom on the right and an old wrinkle prune on the left hehe.

     

    I hope it works for you but I would be curious to see what they say and how it works.

     

    Best wishes

    Jean


  15. Hi Lynn

     

    I have had issues with my teeth for years, but mine was due to grinding. I tend to clench my jaw when I concentrate and end up cracking or breaking teeth. The first tooth that broke I had them remove it, as it was the cheapest and easiest so I thought. After removal my teeth started to shift and I now have a cap in between my front teeth. The tooth next to the removed tooth has become super sensitve to hot and cold, and often times I bruise the gums around that area when I eat anything cruchie. Due to these issues when I broke another tooth I went down the root canal route, and I am much happier that I did that. If it happens again I will probably do the root canal thing as there is less chance for infection, and as others have said I want to hold on to my teeth as long as possible.

     

    Best of luck that it all goes well, and you are pain free with a super smile soon!

     

    Cheers

    Jean


  16. Hi Annie

     

    I too am sorry to hear you are still in so much pain, fingers, eyes, and toes crossed that the antibiotics work and things start getting better.

     

    Are there no other types of local anesthetic that they could use in place of the full anesthetic and surgery? I had my carpal tunnel surgery done years ago and was given a twighlight (not sure on spelling) sleep and it didn't cost that much as you are never under completly. They then injected me with lots of numbing stuff in my wrist, and because of the twighlight sleep, I only felt a slight pinch from the first needle. I had this done as well when I had my wisdom teeth out. Im not sure if it is an option for you, but it did make my procedures easy and pain free. Of course until all the numb juice wears off!

     

    Sending you some soft hugs, and hoping things go much better for you.

     

    :emoticon-hug:

     

    Cheers

    Jean


  17. Hi Everyone,

     

    Just wanted to do a little update on some of my past posts. I know how exciting is that! :emoticon-dont-know:

     

    Well I decided against the surgery for my female problems, have not had an issue, knock on wood, with anything since my visit. I guess it scared it all out of me or something! So I am very happy about that and hoping it stays this way. But figured since I am not working anymore, if I do get a bad bout, I can take some pain killers and lie down with the heating pad and hot water bottle until it passes.

     

    I have been losing weight per the doctors orders and am now down almost a stone (14lbs) in a month. Very happy with that, but I have been getting worse. It is becoming extremely difficult to breath and I am very tired all the time, and I think that may be a result of lack of oxygen. I have an appt with the specialist the first week of July, so hopefully I will get some relief from them on that.

     

    I have taken everyones advice and tried different things to see if I had a wheat/gluten intolorence that is causing the abdominal and torso pains. But that wasn't an issue. What I did find, is that when I cut out a certain name brand cola all together, no reg or diet version, the pains have stopped! I miss my drink, but I like the no pain better so am not going to drink it anymore. My mother and grandmother always said it was bad for me, I guess I should of listened hehe

     

    Still having a terrible time on with the acid reflux issuse, I have a wedge and sleep tilted up, I have been given different meds to no avail. And I always make sure I do not eat anything to spicy or anytime after 7pm. I had one of my bad bouts, where I think I aspirated some of my stomach contents into my lungs. I get to where I am unable to breathe and I have a horrible retching fit that lasts for about 3 mins, then I can get little breaths in but every time I breath in it triggers more spasms and retching, that can last up to a half hour. Very painful, I feel like I cracked ribs this time they hurt so bad, but Im sure it is just muscle strain from the retching. I hope when I go to the Sclero doctor they can come up with some thing for me to do to stop this, as it is VERY scarry when it happens. It feels like I am going to never get a breath in.

     

    Well that is my update, I am enjoying the summer weather for however long it lasts this time. And when it gets really hot, I will moan and winge that it is too hot! hehe I hope everyone else is doing good and enjoying their warm weather too.

     

    Cheers

    Jean

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