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Did you know that exercise increases inflammation in systemic sclerosis?


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#1 alibee

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Posted 22 March 2010 - 02:16 AM

Well, you seem like a friendly crowd, so I thought I would say hello! :)

I hope it's ok me posting here, as the doctors have only said I MAY have sclerodactyly and early scleroderma. My main diagnoses are Polymyositis (Anti synthetase syndrome) with interstitial lung disease and muscle weakness (mainly thighs and upper arms), and Raynauds (but only affecting my right index finger). I get short of breath on exertion and jelly legs/arms if I do very much. I have bad mechanics hands (part of the anti synthetase syndrome) which I use steroid tape and steroid cream on. My hands were very swollen, up until a month ago, but an increase in steroid tablets has reduced this and improved the movement.

I have had six monthly IV of cyclophosphamide with disappointing results, and started Azathioprine on New Years Day, still waiting for this to kick in, and mostly relying on prednisolone to keep me going on a day to day basis. I take aspirin and nifepedine and losartan for the raynauds, and had ten days of Iloprost infusions last July, (again with disappointing results). I get seen at the Brompton for the ILD every 4-6 months, they are fabulous, and Lupus clinic for the polymyositis every 6 months, but my main bugbear is lack of care from my local hospital who I am supposed to be monitored by more regularly. I dropped my prednisolone last week by 5mg, and after 3 days was really suffering, and after 8 days I gave in and put it back to 25mg day, and feel much better. So frustrating waiting for the medications to work and for the doctors to make changes, and see if that works, and all the time I feel I'm living a half life and just want to feel better. I'm still fighting against the diagnosis and finding it hard to come to terms with being this new person.

I have been off work since last June (09) and have to decide soon whether to return to work and if so, for how many hours a week. I am so worried that I may not be able to work, have a 17 year old son living with me, so need to keep a roof over our heads. So difficult to have a rare disease (or two!) and not fit the tick boxes neatly enough to get helpful answers. My local consultant thinks I can return to work, but the reality of living with these conditions is different to what he sees for the ten minutes in his consulting room.

Anyway that's me, hello to you all
Alison

#2 Jeannie McClelland

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Posted 22 March 2010 - 02:53 AM

Hi Alison,

Welcome to the Forum.

It sounds like you are dealing with an awful lot and I am sorry you needed to find us. Don't worry about having a 'maybe' diagnosis, many of our members are in the same boat.

Would it be helpful to have the folks at Brompton and the Lupus clinic weigh-in on returning to work and if so, how many hours? You could also have them spell out a monitoring schedule for your local hospital: what for and how often. I have found that even such things as getting my monthly blood tests from sent from where they are done to the outside Pulmonary Hypertension specialist took a lot of nagging and speaking to the various people in charge of such things in order to make it happen every month.

I hope you'll post often and get to know us and let us get better acquainted with you. Posted Image

Best Wishes,
Jeannie McClelland
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#3 fjperry

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Posted 22 March 2010 - 04:14 AM

Hi Alison -

Welcome! This is a great forum with lots of support and information.

As Jeannie said, there are those of us who have a 'maybe' prognosis. With me, all of my tests were normal but my rheumatologist and other specialist still say I have scleroderma. I'm still trying to deal with that too. I don't have all of the symptoms you have (yet) but I am also concerned about my children and the possibility of not being able to care for them.

I'm not sure where you live or if this is even an option for you, but my HR people told me to file a Family and Medical Leave Act (FMLA) form to keep in my personnel records. This would 'cover' me for absences, frequent doctor's appointment, leaving early, etc. I'm still not sure how this all works yet, but your doctors have to fill it out and it asks them for that kind of information. It's worth a try anyway, if it's available to you.

I hope things get better for you. It's going to be a struggle at first, but with enough support from this forum, family and friends, maybe it will become less of a struggle within time.

Take care,
Felicia

#4 Amanda Thorpe

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Posted 22 March 2010 - 04:33 AM

Hello Alison

Welcome to the forum! We have a picture of sclerodactly so you can see what it looks like.

If you have queries about scleroderma symptoms and a diagnosis you may wish to consider seeing a scleroderma expert, this list of experts includes more than just rheumatologists so you would want to concentrate on the rheumatologists. The Royal Free hospital in London is a centre of excellence for scleroderma and I am a patint there myself.

If you feel you are unable to work then you want to get your rheumatologist on board, not the local one but the one you see at the Royal Brompton or indeed the Royal Free should you decide to get a referral there.

If you are worried about not being able to return to work have a look at what benefits you may be entitled to if you don't or even if you do such as employment and support allowance, incapacity benefit, disability living allowance and there may be more. The government website www.direct.gov.uk has information about all benefits and is worth a look.

Take care and keep posting.
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#5 Amanda Thorpe

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Posted 22 March 2010 - 05:12 AM

Hello Felicia

I think the UK equivelent of the FMLA is the DDA (disability discrimnation act). If you qualify under the DDA you can be entitled to more time off for hospital/doctors appointments.

Take care.
Amanda Thorpe
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#6 Joelf

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Posted 22 March 2010 - 09:45 AM

Hi Alison

Welcome to this friendly & very informative forum from another West Sussex Scleroderma sufferer!! :bye:

I'm so sorry that you've been feeling so poorly and it must be very frustrating not to have a definate diagnosis although, as the other members have said, many sufferers are sadly in the same boat! :unsure:

In lots of ways our stories are very similar; not only do we both live in the same lovely county, but I also have ILD and was treated with Cyclophosphamide at The Brompton (I'm sure the other posters on this forum are heartily bored and sick of hearing me raving on about the wonderful treatment I received from them!!! :rolleyes: ;) ) I'm very loathe to be discharged into the care of a local hospital and have told them that I still wish to be kept under the umbrella of The Brompton although I am fortunate to have an excellent G.P. who refers to The Brompton consultant all the time. :) Like you I am on Prednisolone which made a tremendous difference to the pain I had in my joints and the awful swelling in my fingers, although I was swinging off the chandeliers at first with it!! ;) I also started on Azathioprine on 15th Jan and did have a problem with my liver but that seems to have settled down now after a little bit of fine tuning with the dosage.

Perhaps it would be possible for you to get a referral to The Royal Free from The Brompton which is what happened to me; they would then be in a better position to help you regarding going back to work and being able to claim any benefits to which you might be entitled. It is horrible to have your world turned upside down with a strange and bizarre disease especially if, like me, you have enjoyed excellent health all your life. B)

Do PM me if you would like any further help at all!! :)

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#7 alibee

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Posted 23 March 2010 - 04:39 AM

Thank you :thank-you: for all your responses and advice; it's so good to know you are 'out there', I feel that I may have found where I belong, after 10 months of not quite fitting in with other forums as my symptoms never quite matched.

I am waiting for an appointment to see my local consultant, and shall ask him for a referral to the Royal Free. I really want the Brompton to be my main treatment centre, I have such confidence in the Brompton, I saw one of Prof Wells team, and he was so decisive and sure in his advice and recommendations for treatment, but when I saw my local consultant the next day he was dismissive of the new treatment plan (I think he was put out that he had been over-ridden, but I was caught in the middle of this face-off) and he hasn't followed their advice, which just makes me want to scream in frustration, :emoticon-bang-head: because the changes in my medication that the Brompton implemented have worked wonders. All the time my local team are dragging their heels, the days and weeks are ticking by, and I just want to get better and be in a better place to judge whether work is a feasible option.

I haven't seen anyone since I received the letter sent from St Thomas Lupus clinic saying I may have scerodactyly and early scleroderma, but at least now I feel better informed from reading around this site, and the scleroderma society website (thank you for the link) and can ask my local consultant to refer me straightaway.

After ten months of changing diagnoses, and now new ones appearing I'm beginning to feel like the mule in Buckaroo...how much junk can they pile on me before I flip!! :wacko:

Thank you again,

#8 Buttons

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Posted 24 March 2010 - 02:40 AM

Hi Alison

Just wanted to say welcome to the forum. I was diagnosed a couple of years ago and I only deal with my local hospital Rheumatologist who I have to say does sit on the fence quite a bit even though he diagnosed me ( he does have an interest in it though ).

I had an Illoprost infusion which didn't help me so take liquid prozac for my Raynaud's which does help a little after trying various other meds for it.

We also have a chat room on Wednesdays at 7 - 8.00pm, do come and join us.

Take Care

Buttons

#9 Sandy B

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Posted 24 March 2010 - 11:01 AM

Hi Alison.

I am new to this site too, joined today, as you say everyone seems very friendly and from what I have seen of the site so far has impressed me greatly. Family and friends are very supportive to a point, but I don't like to put on them, because I don't know what the future holds or how much worse this can get. My daughter is there for me every step of the way on a practical level, but on an emotional level she wears this bunny in the headlights look, so I find myself administering the hugs and the words of comfort, difficult sometimes when I just feel like screaming inside and out. Trying to keep a roof over your head is a major problem, I am in the same boat, although my youngest has just gone off to university so I am now living alone and only really have myself to worry about. Fortunately I have fallen into a category where I can claim housing benefit and single person council tax benefit which helps take the pressure off a little. And living alone does have its benefits, less housework, cooking, washing etc. so it's not all bad. I am determined not to be beaten by this, but occasionally I do have my off days too, when I think it is like waiting for a bus and then two lots of new symptoms come along. I think the main thing is to try and stay positive and give yourself targets and things to look forward to other than counting down the days until the next appointment or next set of results. Spending sprees are now out of the question as I have to watch the pennies, but I do enjoy wandering around the charity shops looking for books or other bargains. I also enjoy painting which is an absolute bonus, because when I have a brush in my hand I can forget everything including any aches and pains I might have. But the biggest bonus is finding this site and knowing I am not alone, that there are people out there just like me, going through the same thing,

Best wishes to you and all Sandy B

#10 Deb1million

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Posted 21 April 2010 - 08:12 AM

hi Alison, and another 'Welcome to the family!'

I can echo what the others have said about asking for a referral to the Royal Free. I have been very happy with my local hospital care of my various conditions, but was referred to the Royal Free as the list was getting rather lengthly. (Type 1 diabetes, Lupus, autoimmune Hepatitis, Sarcoidosis, hypothyroid, sjogrens, raynauds, short of breath, and now Systemic Sclero and stage 3 kidney failure)
The Royal Free staff were all brilliant. The 2 specialists I saw said they had never met anyone with so many overlapping conditions. But you would never know it to look at me, and I always try to stay positive. I think I must just have a mild dose of everything instead of any major complications.

I also had to give up a job I loved 2 years ago, and the improvement to my health was amazing, so don't struggle on, trying to be a hero.

I look forward to hearing more from you in time.
take care
Debs

#11 alibee

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Posted 22 April 2010 - 05:55 AM

Hi

Quite a bit has happened in the last month; I am back to work next Monday for four hours per day, for four days per week for the first 3 weeks, then increasing to six hours per day over four days for the following 3 weeks. And then it's supposed to be fulltime post, but I'm hoping to negotiate less hours. I am absolutely dreading it, but need to give it a try and see how I get on. I have been busy catching up with all those jobs around the home I know I won't have time for when my hours increase. I have been sitting back for the last ten months secretly hoping that return to work wouldn't happen, and now it is I'm panicking!

I have an appointment at the Brompton on Tuesday, I wrote to them before Easter and asked them to see me more regularly as I wasn't happy with my local hospital and wasn't feeling great. They wrote this week and said they would see me...I feel a bit of a fraud now, because since I wrote my letter my symptoms have improved a little, but Im hoping they will accept that I need their care more often. I will ask them about the Royal Free too. I see the consultant at my local hospital on Tuesday afternoon, so it will be an interesting and tiring day.

Best wishes to you all
Alison

#12 Joelf

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Posted 23 April 2010 - 05:58 AM

Hi Alison

I'm so glad you've got your appointment at The Brompton; hopefully you'll now be able to get the treatment you need and get your referral to the Royal Free.

I'm sure they won't think you're swinging the lead; I used to feel a bit of a fraud too as I was always bouncing around the place like Tigger and there were so many other people there that were so much worse than me, but I told myself that I wouldn't be there if it wasn't serious.......they certainly don't take referrals on a sort of whim!! ;) :lol:

Good luck with both your appointments on Tuesday and I do hope you get on alright with your job next week. :)

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#13 Amanda Thorpe

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Posted 23 April 2010 - 08:09 AM

Hello Alison

How typical! Do bear in mind that having scleroderma excludes you from ever being or feeling a fraud!

Take care.
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#14 Vanessa

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Posted 25 April 2010 - 09:04 PM

Hi Alison,

Good luck with going back to work. It does feel daunting, I am sure, but at the end of the day you can only do what you can do.

Good luck on Tuesday. I must add my two pennyworth about The Royal Free. They REALLY know their onions there so it is worth pushing a bit because that was my experience, I had to put my case to get my general practitioner to refer me as he had (and has) very little knowledge of Scleroderma, and could not at first see the benefit of seeking additional expertise apart from the local hospital. He is a very helpful man but did need a bit of convincing. It was well worth it as the RF certainly inspires me with confidence.

And of course welcome to the forum.

Vanessa