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Seizing of joints


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#1 msmale

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Posted 03 June 2011 - 09:32 PM

Hi my name is Michelle and I have been diagnosed with diffuse scleroderma for almost 3 years. I had a fairly rapid progression and was put on a 1000mg of Cellcept a day amongst many other medications. After a prolonged period of severe anameia I was taken off of the Cellcept (thought to be the cause of anemia) for a number of months and unfortunately have had a severe relapse. I have since been diagnosed with GAVES the real cause of the anemia. I am now back on Cellcept at 2000mg a day and although I am continuing to get worse I realise the treatment takes time to work.

My question is if someone could help me is that I have been having progressive pain in my left hip and it wakes me several times a night as it seems to seize and takes me a good 10 min to move it again (this has been happening occasionally to my left ankle and the top of my right foot but with no ongoing pain). Last night for the first time it seized twice while I was walking and I was unable to walk. I spoke to my rheumotologist Monday who upped my steroids for a week but there is no relief.

Please does anybody have an idea what it is or what I should do to follow this up.

Cheers,

Michelle

#2 Shelley Ensz

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Posted 04 June 2011 - 01:10 AM

Hi Michelle,

Welcome to Sclero Forums! I'm sorry you have diffuse scleroderma and send my best wishes to you.

Scleroderma can cause all sorts of issues with muscles, tendons and joints. See our section on Skeletal Involvement on our main site. The best you can do is call or see your rheumatologist again to let them know that you are not experiencing any relief yet. They may need to adjust medications, send you for some testing, order physical therapy, and/or urge you to rest the joint until the inflammation has passed.

If it's any help at all (probably not), scleroderma is the worst form of arthritis. It's somewhat normal for me to have issues with joints seizing up (hips, back, knees, ankles, arms, wrist, fingers, etc.) but it almost always seems to resolve on its own. Although it feels like joint issues, in my case I think it is often really just tendon issues.It's easy for the lining of tendons to swell (particularly with scleroderma) and things can "catch" because the tendon isn't able to move freely back and forth. For me, reducing the inflammation and edema is key, such as icing, anti-inflammatories, diuretics, and giving the joint a rest.

While you are waiting for it to settle down, stay away from swimming in deep water because I've found hip seizes to be rough to deal with if you can't touch ground easily when they occur.

On the positive side, most of these things are usually temporary -- especially if you carefully follow your doctor's advise in the meantime, which I'm sure you are. But that's not to say you should just let it go, especially when it is not responding to treatment yet. Please let us know how it goes for you. Here's a big welcoming hug for you.

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Shelley Ensz
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#3 Robyn Sims

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Posted 04 June 2011 - 01:34 AM

Hello Michelle,

Welcome to our forum and I am pleased that you decided to post and seek help from others with scleroderma as to their experience with your current problems.

I see Shelley has given you lots of advice regarding your question on the pain. You will no doubt receive other replies from many of our forum members.

As I do not have scleroderma myself it is much better that others give advice as to their experiences.

I do know that you will receive advice and support. It is bad enough having scleroderma without the mental stress of wondering what is happening now, and what will happen next.

I hope you can see your rheumatologist again soon, and yes, it does take some time for the meds to "kick in".

Thinking of you
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#4 msmale

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Posted 04 June 2011 - 03:05 AM

Thanks so much to you both for your replies.

I do believe it is my tendons also but finding information to read is so hard, at first I was diagnosed with Lupus and it was really easy to find books. I'm also really glad that I decided to post Robyn, as I have been feeling really down in the last few weeks and have been finding it hard to overcome. It will be nice to not only share but read of others experiences. At times I am my own worst enemy and am way too Independent for my own good and I think the reality of realising that I may need some help has blown my confidence. I am a single mum with 3 kids who works fulltime and have even managed to be promoted through all of this. I guess work besides the kids has become my main focus and something to be proud of and since I'm usually in bed by 7.30pm my social life too. I'm sure you will see many more posts from me and hopefully I may be able to help somebody myself.

#5 Joelf

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Posted 04 June 2011 - 06:32 AM

Hi Michelle,

Welcome to these forums!

I'm sorry to hear that you've diagnosed with Diffuse Scleroderma; I can understand your discomfort as I also suffered with pain in my joints until I was put on my medication. As Shelley has said, unfortunately joint and tendon pain is one of the unpleasant symptoms of this complex disease.

Are you being dealt with by a Scleroderma specialist? This is important as many rheumatologists do not have the expertise to deal with Scleroderma.

I've also included a link to Emotional Adjustment which I hope will give you lots of information about coping with this disease. However, the best thing is that you've found our forums and joined our community and so now you will always have access to helpful and informative advice which will rebuild your confidence.

Remember friendship and understanding are now only a click away, so please post often and let us know how you are faring! :emoticons-group-hug:

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#6 Robyn Sims

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Posted 04 June 2011 - 06:32 AM

Hello again Michelle,

Glad that you found some comfort from Shelley and myself. Being diagnosed with a disease that is not so uncommon but most often no-one has heard of is indeed a lonely business.

There are organisations in the three major Eastern States of Australia, namely Victoria, New South and Queensland. There is one support group in WA and Tasmania. There are also Scleroderma Clinics which specialise in each State. These clinics have what we call a data base and you would be seen each year to track your condition. This is for research purposes but it is a great way of keeping up with all the new treatments available and if in Victoria, seeing a scleroderma nurse if needed.

My daughter changed her medications some time ago and she had trouble with tendon pain during this time. At first she thought her condition was worsening (she was diagnosed nearly 12 years ago) but it settled down and she is still not on methotrexate, which was the drug she stopped taking. It is very scary, especially when as you say you have young children. All sorts of things go through a stressed mind. Being a single mother is hard enough in itself.

Not only is this forum here for you but Scleroderma Australia and it's member State's also provide great support. Our contact details are on this site, thanks to the ISN and their willingness to share information.

Please do keep posting, any little change can most likely be explained by all our friends here.

Thank you for your warm reply
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#7 Amanda Thorpe

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Posted 04 June 2011 - 11:00 AM

Hello Michelle

Welcome to the forums! It's like being thrown into the deep end with your legs tied together and being told "now swim!". :lol: It does get better though because our ability to cope improves over time.

Take care and keep posting.
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#8 msmale

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Posted 08 June 2011 - 02:41 AM

Hi to all and to Amanda and Joelf thanks for the welcome,

Got to say this is the worst winter since I've had the scleroderma and the pain is getting ridiculous even with the pain medication I take daily, mornings are really hard. Can I ask what you find effective for pain relief? I fought taking pain relief for a long time but have to admit when it was under control I couldn't believe how much my quality of life improved. At the moment I am finding everything hard; pain, fatigue etc etc. (I hate being a whinger).

Does anybody have GAVEs? This has been a recent diagnosis and I have been told that I will have to undergo lots of endoscopies in my life and will need an iron infusion at least every 6 months. I go in to hospital again in July for another endoscopy and plasma argon treatment and will be able to ask the doctors more then ,it just happened all too quickly last time and was unable to ask. I always like to be informed because let's face it, we are our best advocate.
Another question is they say that after 5 years you go into remission? Is this true? I would love to have some light at the end of the tunnel.

Also Joelf, I do see a rheumotologist who is suppose to be one of Australia's leading researchers into scleroderma (he only practices fortnightly the rest of the time he is in the lab) He is great but is not always forthcoming to me on info as it is at times with super intelligent people.

Once again thank you for your time and listening to me

Cheers Michelle

#9 Joelf

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Posted 08 June 2011 - 05:34 AM

Hi Michelle,

Oh, I am sorry that you're suffering so much pain and fatigue at the moment; it must be incredibly wearing.

I've included a link to our page on Fatigue and also to GAVE ana Watermelon Stomach which I do hope will be helpful to you. Thankfully, I don't suffer with GAVE, so can't advise you from my own experience, but I know some of our other members do and I'm sure they will be able to give you some first hand advice.

Regarding the pain relief, I would be inclined to go back to your doctor/rheumatologist, explain the position to him and ask if he could suggest something else to help you with the pain you're experiencing. Again, many of our members do experience chronic pain such as you've described and will no doubt be able to help with coping strategies.

In my case, although I've only been diagnosed for 23 months, I was suffering for at least 18 months before that and due to the excellent treatment I received, my lungs have now stablised, although my joints still tend to be quite painful. I would say from personal experience that the disease has settled a little, although I still take quite a lot of medication.

I'm very glad to hear that you're being dealt with by a knowledgeable rheumatologist; that's a comfort, anyhow! :)

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#10 Amanda Thorpe

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Posted 08 June 2011 - 02:38 PM

Hello Michelle

Pain is unfortunately a relevant issue for many of us, however, we can't really advise you about specific medication because we aren't medically trained to do so and because it could contravene our forum guidelines:

We avoid personal indications of taking pain medication or other addictive medications so that we are not victimized by drug dealers or abusers

As Jo said you need to talk to your medical team, perhaps they can refer you to a pain management clinic, but also have a look at our resources about pain management.

What we can do is assure you that most of us know where you're coming from, right now I am wishing my right foot would just fall off, and hope you find some relief soon.

Take care.

Take care.
Amanda Thorpe
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#11 msmale

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Posted 08 June 2011 - 03:31 PM

Hi again and sorry for the faux pas regarding the medication!!!! I don't always read things properly!!! I will give the links a good read also. My specialist doesn't really have anything to do with my pain medication; its my general practitioner who helps me. I once asked him about pain medication and he said ""scleroderma isn't painful"". I've never asked again. :thank-you:

Thank you once again.

Cheers,

Michelle

#12 tarah

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Posted 08 June 2011 - 10:41 PM

Hi Michelle

Thank you for all the honesty from yourself and those who replied.

I am new to the disease also and am finding the lack of certainty around symptoms and management similarly frustrating. I do think however that this disease gives us an opportunity to develop a sensitivity towards our own experience, and allow ourselves to focus on the important things in life.

There doesn't seem to be a 'normal' or 'expected' or anything fixed with this illusive predator called "scleroderma" but what we can control is our response to it.

And to say that "scleroderma isn't painful" reminds me of the time when doctors used to say there was no such thing as morning sickness, PMT or menopause. Now we look back and laugh at such old fashioned ideas.

Hang in there
Tara
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#13 Robyn Sims

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Posted 09 June 2011 - 08:11 AM

Hello Michelle,

Seems you are getting lots of support and good advice from around the globe, and from Australia.

Always take a list of questions with you when you visit your specialist. We get so confused and can get out of the surgery and realise we didn't ask the right questions. A good friend is great as well.

Did you know that the Australian Scleroderma Interest Group have clinics in all States in Australia? If you wish to be seen here you can join a database and be seen by a scleroderma expert each year or more often depending on your condition. This group of rheumatologists are dedicated to those with scleroderma. This is not only for research but to make sure all your problems are being looked after. In Melbourne there are two scleroderma specialist clinical nurses also available for assistance.

Your general practitioner can also give you help with a plan which allows you to see allied health care at no cost . This is available under the Extended Care Plan. You can get help from a physiotherapist, podiatrist, dietitian, psychologist etc. all of which can be a great help. There is also a plan for free dental treatment. I know this is available in Victoria but not sure about other states. I will make enquiries if you like.

Please take advantage of all you can. If you are on a Health Care Card you can also get a discount on your electricity energy bills.

:emoticons-group-hug:

#14 msmale

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Posted 10 June 2011 - 09:14 PM

Hi Robyn
I would be extremely grateful for any information on extra services in Adelaide South Australia. I saw my general practitioner the other day and have changed my pain medication starting today so fingers crossed. We also talked about me not feeling bad about seeing an extra specialist and she told me that several of her other patients see more than one. I have these loyalty issues but am feeling slightly let down as my specialist doesn't seem to hear what I am saying eg of this is "Ïm only getting my periods every 60 days" and he sent a letter to my general practitioner saying that my periods are now regular this is amongst other issues. Its hard at times and having no real physical or emotional support makes this a very lonely place to be at times.
Hi also to Tara I agree we can only control our responses and normally Im so optomistic. I think its just a combo of being over it, having been better and going backwards again or maybe just the pain issues. Which will hopefully be sorted today. My Dr said the same thing about my specialists response to the pain as you. My general practitioner is amazing.
Lots of beautiful and positive thoughts your way
Cheers Michelle

#15 Robyn Sims

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Posted 10 June 2011 - 09:28 PM

Hi Michelle,

Good to hear things are moving along a bit. I like the idea of seeking a second opinion.

Very excited to let you know (now that I know you are from South Australia) that Arthritis South Australia are holding a Scleroderma Seminar around about the 26th of June. If you go to their website there should be information about this but I will put a new post up advising of this seminar here on the ISN when I get exact details, what out for these.

There are two scleroderma clinics in South Australia, one at the Royal Adelaide and the other at Queen Elizabeth. These clinics have expert specialist on scleroderma. They also have a database and follow up each patient every year for research purposes, a great way to help others.

There is no Scleroderma association in South Australia unfortunately. However if you go along to the seminar I am sure there is a support group in Adelaide. Will get some more information for you on this as soon as possible.

In the meantime I think you are doing well by taking control your own treatment etc. Well done!

Look forward to hearing from you again soon, and I will post the Seminar information.

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#16 msmale

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Posted 12 June 2011 - 07:10 PM

Thank you so much Robyn I would really appreciate that. I also have to say new pain meds are working a treat and I reckon I will even be able to clean my house today Yay. Now to most people that probably sounds ridiculous to be that happy to be cleaning but for me its pure independance. At one stage I had to have a cleaner and as nice as it was to come home to a clean house I felt it more as a loss. It also never ceases to amaze me how much my fatigue improves when the pain does, It really is a good day today. Only problem today is the Raynaud's it's hard to type with numb fingers and gloves!!! I restocked my glove supply on Saturday, they are just like socks and I would love to know where they have disappeared too.

I hope everyone else is having a good day too.

Lots of positive thoughts to you all
Cheers Michelle

#17 tarah

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Posted 18 June 2011 - 12:49 AM

Hi again Michelle

Yipppeee. I am so happy to hear about your relief from pain and the joy that comes with being normal. A wonderful reminder of what life is about.

Keep on sweeping

:you-rock:

Tara

#18 msmale

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Posted 22 June 2011 - 04:43 PM

Hi Tara

I spoke too soon!!! Although having that good weekend was a godsend.

Unfortuanately I caught a virus which, because of the immunosuppression, turned into multiple infections and another diagnosis of diverticulitis.
It was a nightmare and on Friday when I was admitted feeling unbeliebably ill and extremely sorry for myself if I hadn't had kids, the thought of being put out of my misery would have been high in my thoughts. (Im not depressed).
Anyway I'm home now and when I was at occupational therapy yestgerday gettin a splint made I met a woman who not only has scleroderma but is part of organising festivities in South Australia on the 29th for World Scleroderma day.
So I now have the number of someone for support. We were obviously meant to meet as we were accidentally booked into the same time slot.
I just hope my boss will be understanding to me having a day off after having eight already and then I have several day ops coming up fingers crossed.

To everyone else I hope all is well and I send you loads of positive thoughts.x :flowers:

#19 Robyn Sims

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Posted 22 June 2011 - 05:12 PM

Hi Michelle,

What a fantastic coincidence that you met up with the lady. I wonder could it be Barb by any chance?

Sorry to hear that your bubble burst in this way, but there seems to be lots of ups and downs for some people with scleroderma. Let's hope you have mostly ups! And yes, children do tend to make us fight on regardless.

Hope your boss is understanding.

Is there any chance of you getting to the Seminar in South Australia? Here you would meet lots of others who can support you.

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#20 msmale

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Posted 22 June 2011 - 07:55 PM

Hi Robyn
It was Barb, she seems amazing. Im pretty sure she is going to ring me today. I am going to try really hard to get there but you always worry that they are going to get stroppy at work even though I am one of their hardest workers.
I am so glad to be home, now the hard part trying to relax even though I am tired.
Thanks Robyn I hope you have a great day. :VeryHappy: