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Swelling ankles


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#1 trishtrub

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Posted 28 August 2009 - 10:27 AM

Hi Everyone :unsure:

First of all just want to say it really helps to read everyones account of this illness, so thank you all very much x
If I'm really starting to worry about things I like to speak to you all, hope you don't mind!

My latest worry is my ankles they are really starting to hurt and keep me awake at night, they are also swelling. At the moment I'm still trying to carry on as normal but am worried that the swelling is a sign I may be doing some harm. Does anyone know if I should be resting my legs?

I had a steroid injection on fifth of August which really seemed to help with the pains but my goodness I now feel as though I am paying for the pain break, I seem to be aching and very weak all over.

On the bright side I have been given a lung function test, heart scan and a barium swallow which although I haven't seen my rheumatologist with results the staff doing the tests said they didn't find anything for me to worry about.

I have noticed over the last couple of weeks I seem to be gaining weight and feel very bloated, I also find that after having a meal I would normally eat I get pains which feel as though thay go from my chest to my tummy.

I am also off work and waiting to hear if they can find me a lighter job, good luck to them if they can find something that allows me not to lift, have limited use of my right arm/hand ,to rest my legs and have a nap when I feel tired! In truth I feel that work would be too much at the minute but people keep saying that I'm too young to give up work and it may make me down if I give up. I wish they could understand how I feel, they may change they're opinion!

I always waffle when I get on here, sorry folks x
Take care one and all x
Thinking of you x

#2 Amanda Thorpe

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Posted 28 August 2009 - 12:11 PM

Hello Trishtrub

You never have to apologise for posting or for the content of your post, you are afterall among friends.

Swelling of the hands, feet, ankles can be a part of early scleroderma symptoms, I certainly had swelling of all three in the early stages. Unfortunately so is joint pain, fatigue and digestive troubles, however to ensure new symptoms are not indicitive of anything else you should discuss them with your general practitioner (general practicioner) or your rheumatologist.

You are right to not return to work if you feel unable and you are also right that the majority of people do not understand this disease. Whether or when you return to work is going to be determined by how scleroderma progresses for you as everyone is so different. For myself I took ill health retirement in 2008 at the age of 40 and it was absolutely the right thing for me irrespective of the financial implications, you need to decide what is the right thing for you.

I hope this helps and continue keeping us informed.

Take care.
Amanda Thorpe
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#3 trishtrub

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Posted 28 August 2009 - 12:24 PM

Thanks Amanda x Yes I do feel amongst friends when on The Sclero Forum. So many decisions thrust upon us in a very short time, its very scary, not just the disease but also all the implications on our lives and that of our familys.

Take care x

#4 lizzie

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Posted 29 August 2009 - 07:14 AM

Hi Trishtub, I can empathise re the swollen ankles- its a real problem for me too. As Amanda says they can be one of the symptoms of Scleroderma. They can also be caused by medication commonly prescribed for Raynauds such as calcium channel blockers (e.g nifedipine) and ARBs (e.g Losartan). However, swollen ankles can be due to other medical problems and so should be checked out with a Dr- my rheumatologist did various tests to rule out other potential causes before reaching the conclusion that the swellig was probably due to a combination of the drugs and the scleroderma.

Re the work -it sounds like you really need to be off for the moment- but things change and you may feel well enough to work in the future, so I would caution against completely burning your bridges with your employers. Systemic sclerosis, although not specifically named, almost certainly constitutes a disability under the disability discrimination act and therefore employers are obliged to make reasonable adjustments to your work. There is now something called disability leave which is a ‘reasonable adjustment’ under the Disability Discrimination Act, and is in accordance with good employment practice as recommended by the Disability Rights Commission. Disability leave , which is paid time off work for a reason related to someone’s disability, may be for a long or short period of time, and may or may not be pre-planned. My experience has been that I have have periods when I felt extremely fatigued and found it very difficult to work, but equally there are times when I seem to have plenty of energy. With disability leave it maybe possible in the future for me to negociate to take some time off during the 'tired' phases. For me, continuing to work has definitley been beneficial, psychologically. However, my job is relatively sedentary and I have very supportive colleagues. Everybodys circumstances are different and as Amanda says only you know how you feel and can decide what is the right thing for you.

X Lizzie

#5 Buttons

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Posted 30 August 2009 - 08:53 AM

Hi trishtub

It is not easy working while suffering symptoms of SSc. I found it hard doing my job because I couldn't take breaks during the day and having time off was difficult (I was a teacher for 30 years). All my energy went into the job and it was only when my doctor signed me off & wouldn't let me go back that I began to realise just how much pain & fatigue I was dealing with on a daily basis along with very frequent attacks of Raynaud's. I did get IHR and since have felt much better, it means I can rest when I need to and do not have to keep pretending I feel fantastic when in reality I'm in a lot of pain. Schools are not very easy places to work in when feeling ill!

Like Amanda says we all experience things in slightly different ways.

Take Care

Jensue

#6 Sierra Sierra

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Posted 30 August 2009 - 05:02 PM

Hi Trishtrub,
This is my first real post on the forum so apologies if it's a bit of a ramble! I'm still finding out about the disease in general and about where I'm at with it personally. Sorry I can't give you any answers but wanted to let you know that I, too, have the problem you described of weight gain, bloating and pain after eating. I was diagnosed in May this year and will be seeing my rheumatologist in September for the 'staging' test results. This problem is not one that they have been running tests for although I did mention it in May. It is much worse now than it was then so I will be pushing for some answers. I had a barium swallow and that was one of the tests that led to diagnosis. From that test I know that I have a hiatus hernia and problems with swallowing etc so this may be part of that problem. I'm confused because I thought one of the symptoms of sclero is weight loss!! I'm going to my first support group meeting today and I'll ask if anyone there can provide any info on this problem and will post again to let you know.
Take care x

#7 Jeannie McClelland

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Posted 31 August 2009 - 03:29 AM

Welcome, Sierra Sierra!

Of all the symptoms we get that we don't want, why we don't get the one we do want (weight loss!) is a mystery to many of us. I was looking forward to that too~ :D

Trishtrub, bloating and weight gain are common symptoms, as are swollen ankles and hands, but as Amanda mentions, because other things can cause those symptoms, they should be checked out. In the meantime, here are a couple of links for you to investigate: Scleroderma Gastrointestinal Involvement and Skeletal Involvement. These links come with a warning: don't read and then think everything will happen to you lest you develop a nasty case of cyberchondria! We all do that in the beginning and although it is really wise to be an informed patient, we do need to remember that each person has an unique course of the disease.

Want a giggle? When I developed edema in my ankles, it got so bad that there were even little puffs of flesh sticking through the vent holes in my trendy plastic clogs! You should have seen my feet and legs - I could have been right there in the circus with the bearded lady and sword swallower. I'm there thinking it's heart failure and having a major panic. What was it? The calcium channel blockers the doctor had prescribed~ He changed my medications and hey presto, I had ankles again.
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#8 Amanda Thorpe

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Posted 31 August 2009 - 06:27 AM

Hello Sierra Sierra

Welcome to the forum!

I am confident you will love meeting other people with scleroderma, I know I do, because there's nothing like being with people who know what is wrong with you and the issues you face as a result. I host such meetings in Essex and we always end up having such a laugh because of the scleroderma rather than in spite of it!

I am glad you have posted and look forward to reading more from you.

Take care.
Amanda Thorpe
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#9 Amanda Thorpe

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Posted 31 August 2009 - 06:32 AM

Hey Jeannie

Let's start the world's first sclero circus! Since my skin has started to soften in places, such as on my arms, the hair is growing back but it's coming back thick and dark! I have also amassed a good deal of weight very quickly so I'll be the fat, hairy one in the circus! :lol: Popcorn anyone?
Amanda Thorpe
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#10 trishtrub

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Posted 01 September 2009 - 04:45 AM

Hi Everyone

I've just been reading through the replies and would like to thank you all very much for making me smile :)
Talking to each other definately helps x

Hi Sierra Sierra, I first went to my doctor in May too and have had all the tests which seem fine so far, but I feel that things have got worse recently, hopefully things will settle down, I find reading the forums and personal stories very helpful x

Thanks for the links Jeannie I will have a look now, I'll be careful with the cyberchondria!, lol x

Thanks to everyone and take care x
Love Trish x

#11 Sierra Sierra

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Posted 10 September 2009 - 03:00 PM

Hi Trishtrub and everyone
Thank you all for the welcome messages:)
So sorry for not getting back to you sooner - have had a few traumas to deal with. My partner's father died and at the same time we were moving house - we put the house on the market thinking nothing would happen because of the credit crunch and got a buyer very quickly who wanted to complete VERY quickly - so quickly that we are now in temporary accommodation (which means I have to do it all again!) and I've only just been able to get back online. Lots of stress and overdoing things and the sclero demanded that I pay the price for it! I'm still at the stage of being amazed by how little it takes to wear me out and how much everyday stuff I can't do anymore. It's so frustrating. Anyway, I promised to ask at support group about the bloating, weight gain and pain after eating and get back to you. It seems that the bloating and weight gain (rather than weight loss) are common - as seems to be the case from other replies you had. Overall, I wasn't able to find out anything definite other than making sure that I get it checked out - one of the suggestions about the pain was that it could be an ulcer. Going to check out the links Jeannie gave now.
Take care x

#12 trishtrub

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Posted 11 September 2009 - 09:09 AM

Hi Sierra Sierra

First of all sorry about your partners father.

You seem to be having a very busy time, No wonder your feeling worn out! Hope you find a new home and get settled soon x

I can't believe the complete lack of energy that comes with scleroderma, I was feeling quite bright this morning and decided to go to the supermarket, what a nightmare, everything seemed to take me twice as long as it should and I felt more like a pensioner than a forty year old!! I came home and went to bed!

Hope you can manage to relax a bit in your temporary accomodation.

Catch up soon x
Trish

#13 Kat

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Posted 12 September 2009 - 02:48 PM

This is my only second posting here but I have been reading others messages, and I had no idea that I have been having all of the symptoms. 1) I see a gastro doctor and have for years, he found my gall bladder was not emptying so it was removed, then found my stomach does not move (gastroparesis). It got so bad back in June he did the scope on my esophagus and had two areas that were burned from acid reflux..one in stomach and one where the esophagus ends at the stomach. These symptoms though I have always been told are usually a diabetics symptoms...I have never had an abnormal BS though. 2) My teeth are getting in bad shape again. I had most of the top teeth crowned and now the lower ones are having the enamel eaten away from acid. 3) ankles swelling no matter what dosage of Lasix I take there is some swelling at least on one ankle. Have had dopplar studies done and nothing showed wrong.Plus I have had my heart checked out numerous times and even given a cath to be sure. 4) severe dry mouth, doctors nurse just told me it could be my stomach medicine and to call him 5) dry eyes and have to keep non preservative drops for them 5) sleepiness...hard to wake up and I've always been an early riser, but now I get up and takes me a while to get going and then by mid day I just want to do nothing but lay down. I sleep with a CPAP at night because I was only barely below the normal so they gave me one. 6) Am more aware of cold. I can be in living room freezing but others sitting around in shorts and a tee. No blueness that I've noticed of my fingers. 7) my whole back just aches when I get so tired. My doctors have me on a medicine for helping ones stay awake..sleep apnea got me okayed for the Insurance to pay for it but it doesn't help for very long.
I just needed to be here and see if I am trying to find a reason for the symptoms I am suffering through.

#14 Amanda Thorpe

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Posted 14 September 2009 - 04:07 AM

Hello Kat

Welcome to the forum although I am sorry it is because of so many unpleasant symptoms.

I am not medically trained so obviously cannot say whether you do/not have scleroderma. Some of your symptoms are common in sclero but then again they can be common in other illnesses as well. I'm not sure whether you are in the UK (you have posted on the UK subforum and are welcome to do so wherever you are)or if you're in the US having made reference to insurance coverage. Either way it may be worth your while to be referred to a scleroderma expert as they are best able to determine whether your symptoms are in fact caused by scleroderma or not. Here is a list of worldwide sclero experts for information.

Please let us know what you decide to do and how you get on.

Take care and keep posting.
Amanda Thorpe
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#15 Kat

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Posted 14 September 2009 - 03:18 PM

Oh, am sorry had not even realized I was on the UK site, thank you for letting me know. I think I was so interested in finding what was going on that I didn't pay any attention to that.

I understand about not being a physician, I work for one as business manager, not a nurse, but at times it just helps to really explain something to someone other than ones you work for. I did call my gastro doctor this morning, as suggested by my internal medicine physician's nurse. To start off with I'm now on an all liquid diet for one week, and to stop taking the medicine that makes my stomach empty. Since it won't empty that is the reason for the diet. It was odd the nurse asked me if the sides of my mouth were sore and I said yes and had been for over a week.

When I first explained everything, I failed to put in there that the doctor I work for, after I said I knew now what was wrong with me and told him Sjogren's, his reply was no you don't have that it sounds more like scleroderma. That was all that was said.

I will click on the links you provided to me and I appreciate you answering me. I will return later on when I find if these are all separate symtoms or as symptoms of one illness. I hope for long lasting remissions and the best for each and everyone of you.