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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 trishtrub

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Posted 14 July 2009 - 05:39 AM

Hi Everyone :)

Just wanted to say thanks for this site and everyone who posts their stories.

I'm forty years old with a wonderful husband and two lovely children.

I was suffering with back pain from about October last year, which led to me having three months off work and some physio which didn't seem to help!
Since going back to work I noticed I was feeling very weak especially in my right arm and pain in my right hand, I thought I may have Carpal Tunnel! Also my Raynaud's seemed to get very bad, shopping was a nightmare as soon as I entered the cool areas my fingers went white, and this would happen if it was a bit cold outside three or four times a day! I also seem to have a lot of aches and pains in my joints and muscles.

I have a lovely doctor who sent my bloods away and the tests came back showing CREST. I was fine until I started reading up on some of the internet sites and then got myself into a bit of a state! I paid privately to see a consultant and am going to have some more tests to find a base line for this condition next week.

I am much calmer now and find reading this site very helpful, I know I'm not imagining things when others feel the same!

One thing that bothers me is the tiredness, some days I just go back to bed for an hour or so which my general practitioner says is what I should do, but a doctor I saw at occupational health last week, (I'm off work, again, because my job is very heavy and I feel I may need something else), said the worst thing I can do is rest! Some advice would be good.

Haven't I gone on! That's that off my chest! Love and best wishes to all x

#2 Jeannie McClelland

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Posted 14 July 2009 - 09:30 AM

Hi Trish,

Isn't it a relief to have a diagnosis? When I got mine, I thought "well, finally! Now I can get on with dealing with it." It will soon be 15 years since I dealt with the National Health and I am sure things have changed. Will you be able to get on to a specialist's list - I.e., a rheumatologist who has knowledge of scleroderma? As you've already discovered, doctors who don't really understand the disease will often give conflicting recommendations. I think you will find most of us here on the Forums will have experienced the fatigue and tiredness that so often goes along with autoimmune diseases. We probably all feel that when you feel you need to take a rest, you probably should. My rheumatologist always tells me to "listen to my body." He's right, when I don't listen and try to push through fatigue or sore and achy muscles, I always end up paying for it. Have you read our page on Fatigue? It explains about scleroderma-related fatigue and gives a lot of good tips for dealing with it.

Warm hugs and best wishes for a nice nap! :)
Jeannie McClelland
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International Scleroderma Network

#3 Amanda Thorpe

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Posted 16 July 2009 - 02:58 AM

Hello Trishtrub

Welcome to the forum! This is my 3rd attempt at this message, technical issue don't ya know!

The first thing I would say is sleep, sleep, sleep and the second is never take advice from anyone who knows nothing about scleroderma.

Fatigue is one of the most challenging symptoms to deal with and trying to work through it is not the answer. All this will do is make you even more fatigued, you need to become a lady what sleeps!

It would also be helpful, as Jeannie has already said, to see a rheumatologist who is a scleroderma expert. It's a complicated disease and needs someone who knows which tests to refer you for and who can intepret the results correctly. The Scleroderma Society has a list of specialists that includes rheumatologists and there may be one accessable to you that your general practitioner (general practisioner) could refer you to.

How are you finding adjusting to the diagnosis? It can be quite challanging to adjust to, we do have a page on emotional adjustment that you may find helpful.

I hope this helps and look forward to hearing more from you.

Take care.
Amanda Thorpe
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#4 trishtrub

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Posted 16 July 2009 - 07:37 AM

Hi Again

Thank you for your replies, I will definately rest when I'm tired. To be fair the same doctor told me I don't have Scleroderma, I have CREST, I couldn't be bothered to try to explain Limited and Diffuse to him!!

I am seeing a Rheumatologist next week who specialises in connective tissue disorders amongst other things. Hopefully things will be more clear after he as given me the tests I need.

I just wanted to check if its normal to have different pains all the time! Today my hands, elbows, wrists and fingers are hurting. Yesterday my back was the worst. I tried to go for a walk with my beautiful nine year old daughter but was walking so slow she was cracking jokes about the snow coming at this rate, meaning the winter would be here by the end of our walk!

Anyway hope everyone having a good day x Take care x

#5 Jeannie McClelland

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Posted 16 July 2009 - 08:01 AM

Having a different pain every day is a 'feature' - it keeps us from getting bored with the same old ache every time! Not everyone is so lucky. :lol:

I can't speak for everyone else, but I notice a lot of variability with my aches and pains, energy level, and so on. I had passed my crystal ball on to my daughter-in-law, figuring she needed it more than I do. So I always wait until I've been up for a couple of hours to see how I'm going to feel that particular day.

It would be really nice to be able to predict what sets us off or even if we didn't know the cause, getting an email saying "Avoid planning a full day Friday, 17 July." That would be great!

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#6 Amanda Thorpe

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Posted 16 July 2009 - 09:50 AM

Hello Trishtrub

So you've already discovered that laughter and a great sense of humour are great weapons with which to combat any chronic illness, in our case scleroderma. I can't believe a doctor actually said you don't have scleroderma you have CREST!

The pain will wax and wane like the disease itself, it is pretty full on in the beginning though and takes some getting used to.

Do let us know how you get on once you see the rheumatologist and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

#7 trishtrub

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Posted 17 July 2009 - 12:06 AM

Hi Everyone

Just a little update. I received a copy of a letter being sent from the doctor, who is an Occ health locum, that I have mentioned above!. I am not a happy cookie!

He as said that I have been complaining of generalised aches and pains and fatigue for a few years (wrong, I said I started with back pain last November, when I was first off work!). He then goes on to say that he is unable to identify any major problems with muscles or joints but that he as written to rheumatologist for further information on my condition and that it seems that some tests show that there might be a problem. He only checked my hands, checked my grip, told me I dont have Scleroderma and that there aren't many other jobs available if I can't go back to mine!

How can he make any comments on my health when he as no records or test results in front of him, the way he's worded it makes it sound like I'm making it up! Its a good job the staff at work have seen me struggling and have said I have slowed down dramatically in the last few months!

I feel sick now because some days when I'm not feeling too bad I feel like a fraud myself! I'm not a lazy person and want to go back to work but really need something where I'm not lifting and up and down all day!

Sorry folks, miserable message today, Take care x

Love and best wishes to all x

Just answered my door and some beautiful flowers have been delivered from two special friends at work x Just what I needed, thanks girls xx:-)

#8 trishtrub

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Posted 21 July 2009 - 08:08 AM

Hi Everyone

Just to say I have been to see my consultant and he's started doing tests for my base line. I've had more bloods done and a chest xray so far other tests will be coming through shortly. He's given me Adalat (nifedipine/procardia) tablets, Hydroxychloroquine sulphate (plaquenil) and Lansoprazole capsules! I'll be rattling at this rate!

I asked if I needed any life style changes and he said just make sure I keep warm!

At least I now know whats wrong with me and am being monitored so thats got to be good.

Take Care x
Catch up soon x