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Question with various issues


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#1 uknlv18

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Posted 04 November 2011 - 02:05 PM

Hi all,

Been awhile since I posted, since fracturing my arm about 6 weeks ago, I have been having issues with the arm and it has been difficult to do much of anything. My arm is doing better, but they have started having me reduce my steroids, which is a good thing, but it has meant that my skin problems are acting up now. I get red patches that the doctor says are Scleroderma rashes, the muscle underneath wherever these rashes appear gets really hard and it is very painful to the touch. Not the skin but the muscle. Does anyone know of anything I can do to help reduce the pain? I have tried various types of creams that heat or add cold and they dont really seem to help. It is in my shins and calves and it seems to be worse after sleeping, when I wake up I can hardly walk for a bit then it kind of calms down.

My left hand is constantly numb these days, well the tips of the fingers are always tingling like when your hand goes to sleep. I though at first it was because I was having to use it more due to the fractured right arm. But it is still doing it now that I have use of my right hand more now? Is this something to do with the Raynaud's? This is new to me. I get the numbness but usually after the fingers have gone white, then blue. Not continulously as it seems to be now.

My last question is about my teeth. I have had two teeth break now and am being told that it is due to the Sjogren's and Scleroderma. My question is do any of you UK people know if the repair of the teeth could be covered under the NHS as it is caused by my medical condition instead of it just being a dental issue? Just wondering as I have been told that crowns cost about £500 each and I don't have that kind of money these days. I used to work for insurance companies when I lived in America and if a problem with your teeth was caused by a medical condition then it was covered under your medical insurance and not your dental, just wondered if anyone knew if that was the case here in the UK?

As always any help and advice would be greatly appreciated. Have been having a very bad month health wise and have been doing little more then being up an hour or so and then back to bed. My weight has bloomed back up due to lack of excersise and just moving in general as well as the steriods. Getting into one of my bad mind places and am struggling to keep my glass half full, feels pretty much empty these days :crying:

Cheers
Jean

#2 Amanda Thorpe

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Posted 04 November 2011 - 05:46 PM

Hello Jean

As far as I know whether you pay for dental treatment is based on what benefits, if any, you are on. Disability Living Allowance and Employment Support Allowance do not entitle you to free anything because neither are means tested benefits. I am in receipt of both of the above and have scleroderma and have to pay normal NHS prices for dental treatment.

I need a crown and the price I have been quoted as a NHS patient is £200.00 and I believe that's the most I can be charged as a NHS patient. Are you being treated as a NHS or private patient because as a NHS patient there is a limit as to what they can charge you for any treatment.

I don't really know what to suggest about your other issues other than to say I had a lot of tingling in my hands and feet in my first year or so. I used to smother my hands and feet with a menthol musclr rub and then with a vapour rub, the idea being the tingling from the heat took my mind off of the other tingling. It enabled me to sleep so the distratcion worked! Never really knew what caused the tingling I was just glad it went. I would talk to your doctor thought about numbness, just in case.

As a patient at the Royal Free I have a team (well 2) specialist nurses I can ring with queries and as I am a patient they can access my records. There is a list here  of speciaist nurses available around the country, they may be able to help?

Yep there are going to be times when the glass looks half empty or totally empty, of that there is no doubt. Please don't let weight gain be one of those reasons. Unless you are becoming so obese as to have health problems it's not worth it...in my opinion.

As for having to sleep all the time, tell me about it. I actually went out today, with Ma and Sis, first time out the door for weeks and was out for 2 and 1/2 hours, consequently I came back and slept for 5 hours to compensate for it. I'll be sleeping tomorrow as well!

I have started to look at the small picture, if I get up for an hour or so and do maybe one thing and then go back to bed for hours, at least I have been up and at least I did something. If I only do one thing in an entire day I at least achieved one thing and if that's all I can achieve then so be it. Tomorrow? Well that's another day!

Take care.


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#3 rubydoo

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Posted 05 November 2011 - 05:41 AM

Hi Jean

Sorry you are having such a rough time; it happens to all of us at times. I get free dental treatment here in Sheffield at the local dental hospital so I am very lucky - it does mean that the final year dental students get to practice on us but so far this has been a good experience. Lately I also have been getting very hard and swollen muscles, particularly in forearms, making them painful and stiff. Not had chance to speak to my specialist yet as don't see her until December. I have just been trying to keep them moving and flexing them at regular intervals which helps. Can't imagine how drastically your life must be affected by having to sleep so much as fortunately, although I have TATT (tired all the time syndrome), I manage to work 4 days a week and look after my 4 kids on my own - with help from a fantastic child-minder. I wish there was something I could suggest to make you feel better. I think Amanda is right, take each day as it comes and every little achievement counts. Hope you start to feel better very soon. Don't feel bad about feeling bad.
:)
I have lost all my emoticons somewhere in cyberspace and despite looking for ages can't find them so I am sending loads a big bunch of colourful flowers to cheer you up.

Helen

#4 Joelf

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Posted 05 November 2011 - 02:37 PM

Hi Jean,

I am sorry to hear that you're feeling so down and have so many miserable health problems to contend with. It must all seem a very overwhelming and hard to cope with; a little like Alice in Wonderland having to run very fast to just stay in the same place!! ;)

Our National Health dentist decided to go private so we pay into a private plan every month and like an NHS patient the dentist charges about £200 for a crown, but most of the other dental work is covered by our monthly payments. I don't know whether a similar system would help you? You could certainly enquire from your dentist as to whether any dental work which was caused by Scleroderma affecting you, would be covered by the NHS.

Raynaud's causes blood vessel spasms, which can cause painful coldness, colour changes, numbness and tingling so could be the reason that you're suffering such discomfort in your hands. The link does give some helpful advice on making this very unpleasant syndrome a bit more bearable.

I've included a link to pain management which I hope will be helpful to you.

Amanda and Helen have given you some wise advice and I really hope that you will soon be feeling a little more positive.

Best wishes,

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#5 marlene

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Posted 06 November 2011 - 04:54 PM

Hi Jean,

I hope you feel better soon and I know this is hard.

I have had numerous dental issues too. In January my dentist refused to treat me because of my condition and he referred me to the local Raigmore Hospital oral dept as they are more specialised to deal with patients with auto immune disorders. I was a bit put out at first but on having been there this year they are fantastic and there is no set time for the length of the appointment. They take as long as you need. Because the treatment is in the hospital you don't pay for it which is an added bonus. My systemic sclerosis is unfortunately attacking my gums too and I am in the long process of having a lot of work done.

It may be worth asking your dentist if it is an option for you?

The pain of tingling Jean is what I get with the Raynauds and the most effective thing is sitting with a cosy hot water bottle in a cover and keeping the hands on it so the hands don't get a chance to get to the white or blue stage. I find this is the most effective. I used to wake up every night as it was really bad at night but I use the hot water bottle for my hands. I am unable to take medicines and I have to utilise whatever methods I can to relieve the pain. It is worth a try.


From Marlene :)

#6 Sheryl

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Posted 06 November 2011 - 05:57 PM

uknlv

Jean, have you thought about Carpal Tunnel being the problem with your hands and fingers being tingling and having numbness. That was one of the first major issues I dealt with when I was diagnosed with Scleroderma then later came the Raynald's. Hope this tidbit might help. I had to wear special arm/wrist braces for a couple months prior to surgery to help reduce pain and tingling.
Strength and Warmth,
Sheryl

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#7 judyt

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Posted 07 November 2011 - 01:45 AM

Hi Jean,
Sheryl has a very good point there, Carpal Tunnel problems are certainly caused by Scleroderma, and although I have never suffered from it I know people who have and it can be very debilitating. It could have been hurried along by you having to use that hand more lately. Perhaps you could read up on the symptoms of Carpal Tunnel and get a better idea if that seems to be the problem.

Best wishes

JudyT

#8 uknlv18

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Posted 07 November 2011 - 05:49 AM

Thanks everyone for the suggestions. And it may be Carpal Tunnel, I had surgery on my right hand many years ago and the symptoms do seem to be similar. Just didn't think about it. I am going to check into the Dental Hospital here in Leeds, not sure what you need to do to be seen there. But it is worth a try. Anything to save some money. Have had all my credit cards and such paid off for awhile. After I lost my job I scrimped and got everything paid off that was possible. Don't want to add debt again if I can help it. Am feeling a bit better, started doing some exercises and boy is it hard lol 6 weeks of relative inactivity sure does make a difference! As always you all help me to feel better and kick myself in the rear end and get myself back on track. Thanks again.

Cheers
Jean

#9 Amanda Thorpe

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Posted 07 November 2011 - 11:49 AM

Hello Jean

If the dental hospital in Leeds can't help you, could you find a reasonable dentist who might let you make regular payments towards your treatment rather than having to splash it out all in one go? Not a nice thing to have to do I admit but as you say, you don't want to have to use those credit cards.

Let us know how you get on and take care.
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#10 Lynnie

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Posted 08 November 2011 - 06:53 PM

Hi Jean
I am sorry you are suffering with your mouth and hands. I too get the numbness in my hands and pain in my shin area ..keeping them warm and massaged is the key, the girls have given good advice about the possibility of carpel tunnel as the swelling we get or puffiness can press on the nerves in the wrist.

As for the mouth/teeth issues I was refered by my doctor and dentist to our local hospital's facial/maxilliary dept. to have care and treatment as they deal with everything with the face and mouth and I am sure your doctor would refer you if you explained your difficulties. I have been treated very well; I still have my regular checks at my dentist with a open appointment at the hospital if my dentist thinks I need more help; it's worth a try, Jean

Please try to keep your spirits up as you know we all are here running the same race .....we all get there in the end :emoticons-i-care:
Hugs
Lynn

#11 chockers

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Posted 02 December 2011 - 09:22 AM

Yeah problems with teeth and gums but don't know the answer as yet .Dentist may refer me to east man hospital one day?

Bung on a few more clothes might help.

Chris