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#1 atkinsc

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Posted 15 July 2012 - 08:42 AM

It has never occured to me that my tendonitis could be related to my scleroderma; anyone with any thoughts??

I've read about tendon rub, any helpful hints?

Thanks Clare.

#2 Joelf

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Posted 15 July 2012 - 12:30 PM

Hi Clare,

I am sorry that you are having tendon problems. Tendonitis is one of the symptoms of scleroderma. See our Systemic Scleroderma Symptom Checklist, which is in a PDF brochure that you can print off and take to your doctor. Also we have a page on Skeletal Involvement regarding this which I hope will give you some more information. I've also found a thread on Tennis elbow which you might find helpful.

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#3 rubydoo

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Posted 16 July 2012 - 11:56 AM

Hi Clare
sorry you are suffering with tendonitis. I can completely sympathise with you as I have been suffering for the last 3 months and have been told it can take up to 2 years to get better. The pain has been excruciating at times, particularly first thing in the morning as I just can't help laying on my side whilst sleeping. I have had weekly physiotherapy and a course of acupuncture with no success. She recommended an elbow support at first but this just made things worse. She also advised completely resting my arm. I just looked blankly at her and then wondered what planet she lived on! (Single mother of 4 children).

I didn't realise that tendonitis can be a symptom of scleroderma - my general practitioner never mentioned it and neither did the physiotherapist. I wanted to try anti-inflammatories but my rheumatologist is dead set against them for scleroderma sufferers. So I have been taking paracetamol and pain medication when I need it but again I have not found much relief from this regime. I think I just have to accept the fact that it is going to take a long time before I see an improvement. In the grand scheme of things it is not a serious health problem but it certainly impacts significantly on your day-to-day activities. I tried to bribe my teenage sons to do the ironing but it was so stressful watching them this only lasted a day.

Hope you find some relief soon
Regards
Helen

#4 Amanda Thorpe

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Posted 16 July 2012 - 12:44 PM

Hello Clare

Have a look at our video for systemic scleroderma symptoms it lists tendonitis.

I hope you find relief and would say a word about the reluctance for people with scleroderma about NSAID's (non steroidal anti inflammatory drugs). We know we're not supposed to take them because of gastrointestinal issues, for me I also have heart and blood pressure issues, but in some cases, like mine, the risk vs benefit is in favour of taking NSAID's, it certainly is for me. I discussed it in detail with the doctor and we were both in agreement that I could take naproxen and it helps. Maybe for a short period a NSAID would help you, taken with the agreement of your doctor of course?

Take care.

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#5 Amanda Thorpe

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Posted 16 July 2012 - 12:56 PM

Hello Helen

Your comment about the ironing made me laugh, it brought back some funny memories! When I first met my husband he used to work a lot of holidays and weekends so I would look after the boys, then 11 and 14 and rather than do nothing I used to do the ironing and let me tell you there were always piles of it! How many T-shirts can 2 boys have?!

Anyway as time went on and our relationship progressed and the boys got older I decided they could do their own ironing and after all they needed to learn how. It was pitiful, truly pitiful and many times I took over the ironing of the youngest rather than listen to the whimpering!

Take care.
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#6 judyt

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Posted 16 July 2012 - 10:48 PM

Hi Clare and Helen,

Interesting conundrums come up from time to time. I have had Scleroderma for many years but was undiagnosed until 2003 so I just sailed along wondering what on earth was wrong with me and hoping for the best.

In 1975 when I was 30 and our daughter was a 6month old baby I had tendinits in my right elbow. It made life interesting with a hefty baby to try to bathe and change so we hired a lady to do some housework for me and friends would pop in and attend to baby Marie. The paracetamol pain relief eventually made me nauseous so I opted for a Cortisone injection which was successful and because nobody recognised the Sclero, nobody was worried.

Move on to the 2000's and I had serious pain in my shoulders. Once again nobody connected it with Sclero so I had more Cortisone and instant relief. As far as I know no untoward effects so who knows?? Now that I have a Sclero diagnosis I wonder what will happen if I get a recurrence of the pain.

I can totally relate to the ironing thing and have often had to farm out my ironing to somebody willing or pay the local laundromat people to deal with it. Every now and then you meet somebody who loves ironing - keep a note of that so you can call on them in times of need.

Hoping you get some relief soon.

JudyT

#7 rubydoo

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Posted 17 July 2012 - 03:02 AM

Hi Amanda and Judy ,

I think I will speak with my rheumatologist at my next appointment about taking anti-inflammatories. My past experience with taking them has proved they are effective for me. I even took some Voltaren (diclofenac) once that was 3 years out of date (I only discovered this after I had taken them) but they worked like magic for my bad back! I am not recommending anyone else does this (LOL) by the way. My wonderful friend has been doing some ironing for me, but having just arrived back from 2 weeks in Crete you can imagine how much washing and ironing we accumulated - I want to KEEP her as a friend so will brave the pain (oh woe is me) and just get on with it.

Love
Helen

#8 Amanda Thorpe

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Posted 18 July 2012 - 05:08 AM

Hello Helen

I used to use diclofenac suppositories for migraines and sciatica and they worked well for sciatica but sometimes not for the migraines and I would end up having to have an injection of the drug. Anyways I was taken off of diclofenac by the same doctor who prescribed the naproxen! Needless to say this was because my pain management needs had changed but even the diclofenac as a suppository could cause gastric bleeds which is why I was taken off of it.

Like I said in my earlier post it's a case of deciding what's worse the pain or the potential side effects and it's not always an easy decision. Weirdly I think that the worse your scleroderma is the easier the decision is to make because you have less to lose. That's how I see it anyway and for me it's all about quality not quantity.

Now if you'll excuse me I am going to go and have a quality moment with the cat by snuggling up next to her for my nap, let's see it will be about 3-5 hours this time? I hope she's not plonked herself right in the middle of where I want to sleep, contortionist I ain't. If she has the cat treats will be coming out as a bribe to get her to scoot over. My life is controlled by a cat. Oh well, I guess it could be worse, I could be one of those people who loves rats or mice or something even more gross and they could be running wild everywhere...

Take care.

Take care.
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#9 rubydoo

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Posted 18 July 2012 - 11:46 AM

Hi Amanda

I totally agree that it is quality not quantity and based on this I think I will give anti-inflammatories a try (if I can get general practitioner to prescribe). By the way my rats, Buzz and Woody, are highly offended that you think they are gross. I will upload a picture for you to shriek at when I can work out how to do it. Actually I was bullied into getting them by my kids, we have only had them a few days and I hate the smell already. Oh well, at least they don't snuggle with me at nap time!

I will let you know regarding the anti inflammatories.

Take care
Helen

#10 Amanda Thorpe

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Posted 18 July 2012 - 02:22 PM

Hello Helen

Your post gave me a right laugh! Rats, really?? I never thought of the smell of them, mind you we had guinea pigs as kids and they, or rather their bedding, would smell as the peed on it.

To upload a photo, click on the photos tab at the top of the page and then down the right hand side, select what album you want, for example pets and animals, on the right hand side there should be an upload button, click on that. This brings up Step 1 the upload page, click on browse which will then open your library of pictures, select the photo you want and double click on it, this should take you back to the upload page and now click the upload button, then the review and publish button which brings up step 2. You can give your photo a title and description, then click finish and publish and its done.

One thing you might have to do is download a programme to optimise the photos, which makes the photo smaller so it takes up less space when you download it. Any problems please PM Jo Frowde, she is the expert!

Can't wait to see the rats!

I hope this helps and take care.
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#11 Lil Dee

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Posted 19 July 2012 - 10:33 AM

This is a subject very close to my heart. I have been suffering with Achilles Tendonitis for about two years now, and have almost continually been taking pain relief. I also injured my back/neck back in Sept. 2009, and go for physio for either ailment reasonably regularly, to help manage the pain too.

My rheumatologist knows I'm taking the pain relief including ibuprofen, and they've never said anything about my taking them, though I am on Lansoparazole (PPI) to help protect my stomach, so I wonder if they're happy that I don't complain about stomach issues?

I have recently been thinking about asking to change over to Naproxen, and after speaking to my pharamcist (very nice lady!) I may well ask my general practitioner about this. Apparently they have done a study of Naproxen recently, which has proven it to be as effective as Dicolfenac, but with far less issues (as Amanda mentioned, the bleeding issues have been identified in many people taking Diclofenac).

RubyDo - I hope you get to enjoy your rats - the domestic ones are supposed to be very good pets, and quite intelligent too. If they smell, make the kids clean them out more - they wanted them !! (Yeah, I know, good luck with that one!)

#12 atkinsc

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Posted 19 July 2012 - 03:03 PM

Hi Clare
Sorry you are suffering with tendonitis. I can completely sympathise with you as I have been suffering for the last 3 months and have been told it can take up to 2 years to get better. The pain has been excruciating at times, particularly first thing in the morning as I just can't help laying on my side whilst sleeping. I have had weekly physiotherapy and a course of acupuncture with no success. She recommended an elbow support at first but this just made things worse. She also advised completely resting my arm. I just looked blankly at her and then wondered what planet she lived on! (Single mother of 4 children).

I didn't realise that tendonitis can be a symptom of scleroderma - my general practitioner never mentioned it and neither did the physiotherapist. I wanted to try anti-inflammatories but my rheumatologist is dead set against them for scleroderma sufferers. So I have been taking paracetamol and pain medication when I need it but again I have not found much relief from this regime. I think I just have to accept the fact that it is going to take a long time before I see an improvement. In the grand scheme of things it is not a serious health problem but it certainly impacts significantly on your day-to-day activities. I tried to bribe my teenage sons to do the ironing but it was so stressful watching them this only lasted a day.

Hope you find some relief soon
Regards
Helen

Hi Helen,

Thanks for your feedback, and am sorry you too are struggling with the tendons. I have tendonitis on both ankles, 1st onset was 2 years ago (18months before diagnosis) so just thought I had strained something, and whilst am very stiff in the mornings and is painful when pressure is applied (I can no longer wear my walking boots!) I don't need to take pain killers that often, however, I did try anti-inflammatories but my stomach symptoms just got worse! Despite being on 3 different drugs for my stomach. I've been advised to try ice.

It just all makes sense now, all these niggling symptoms that I have had over the past 2 years are ALL related to this condition!!!! Tendons, itch, rash, reflux, bloating, altered bowel habits, Raynaud's!

I saw a podiatrist today who has given me an exercise sheet and some insoles to try.

I'm hoping it will work, although not serious, it would be nice to be free from the symptoms of tendonitis as we have to put up with sooooo many other symptoms!!
PS I don't iron!!!!!!!

Take care
Clare.

#13 Amanda Thorpe

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Posted 20 July 2012 - 02:53 AM

Hello Clare

Yes, there are many symptoms of scleroderma, have a look at our video symptoms of scleroderma which gives a list of some of them. It is quite an amazing disease when you think about it, really, how many diseases can cause tendinitis and kidney failure for example, symptoms so different and not connected at all. Weird if you ask me!

Take care.
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#14 rubydoo

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Posted 20 July 2012 - 08:33 AM

Hi Clare
Yes I don't think you're the only one that had many symptoms before diagnosis but just didn't put two and two together; as Amanda says so many totally unrelated symptoms it's not surprising really. I hope that the insoles give you some relief, anything's worth a try in my opinion. I know several people who do as little ironing as they can get away with but I just can't help feeling like a bad mother if I don't iron the children's clothes. Totally stupid I realise but that's the way it is
Good Luck
Helen

#15 scampie5

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Posted 19 September 2012 - 04:21 PM

Hi, before I was diagnosed with scleroderma I had tendonitis and had a small operation on my thumb. I remember the doctor doing it called over another person saying he had never seen so much I can only describe it as muck before on the tendon and had to scrape it all off. It was very painful before I had it done but so much better these days, however I think I have it in another finger, very painful. Maybe when I had the operation it was part of the scleroderma? So many things in my past that I can now relate to maybe having symptoms of scleroderma that get mistaken for other things, but I think that is the same with most illnesses. Hopefully in the furture certain symptoms will be recognised as scleroderma or at least make a doctor check just in case. Lynn

#16 Amanda Thorpe

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Posted 19 September 2012 - 04:31 PM

Hello Lynn

Welcome to the forums! Because scleroderma is such a complex and varied disease it is extremely common to have its symptoms confused with another more common disease and I think that this mistaking of symptoms is more common in scleroderma that other illnesses. One of the contributing factors when it comes to difficult diagnosis.

What type of scleroderma do you have and how long have you had it? I have both localised (morphea) and systemic (diffuse) so I have a great time as you can imagine!

Take care and keep posting.
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#17 Joelf

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Posted 20 September 2012 - 12:51 PM

Hi Lynn,

Welcome to these forums!

I can understand how with hindsight you can relate a lot of your symptoms to Scleroderma. I suffered with bilateral Carpal Tunnel syndrome at least a year before I was diagnosed with Scleroderma and because it's a very common operation I really didn't connect it with the disease until quite a time afterwards. Likewise with Raynaud's, which I'd had for several years.

As Amanda has said, it really is a most complex and difficult disease to diagnose, even for the average rheumatologist, which is why we do recommend that if possible our members consult a Scleroderma specialist.

I'm sorry to hear that you've developed tendonitis in another finger; it must be excruciating for you and I hope you can get it resolved.

Now you've joined our community please do keep posting and tell us a little more about yourself.

Kind regards,


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#18 Deb1million

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Posted 24 October 2012 - 01:12 PM

Hi All,

I have also recently been diagnosed with Achilles Tendonitis, and started physiotherapy last week after increasing pain since last summer.

I'm on first name terms at the physio department, as I have bursitis in both hips, tennis elbow, stiff hands, frozen shoulder and of course its all due to the systemic scleroderma (thanks a bunch!)

Ice is the best thing to relieve the tendonitis pain, but when the doctor says "try not to do too much" I was going to ask if they supplied domestic help and a chauffeur on prescription?!!

Recently been diagnosed with Vasculitis after a bleed into my left eye. So that brings my autoimmune count to about a dozen! It wears me out to list them all whenever I see a new doctor!

Keep smiling!
Debs

#19 Amanda Thorpe

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Posted 24 October 2012 - 04:58 PM

Hello Debs

If you don't have it, the disease don't exist! Seriously, I am sorry you've got more physical issues to deal with, the eye problem must have been very scary for you. What does this mean for you in the future?

It's good to see you post again, you're always so encouraging even when things are tough for you...take it easy eh? Hmm only if someone is available to do the 101 things you do everyday!

Take care.
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#20 winnie97

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Posted 20 November 2012 - 09:51 AM

Hi, I too have had tendonitis in my feet on and off and when it's bad it makes me unable to walk my general practitioner never mentioned it could be related to my systemic sclerosis. I have also had it in my wrists and hands. I've never mentioned it to my consultant as she always dismisses any of my symptoms; as she sees it, smaller symptoms as nothing to do with systemic sclerosis (SSc), but when you read information about them they clearly are. But as she has never treated a patient who has had this before, I'm never very confident in her and find my general practitioner more knowledgeable and willing to do her best compared to the hospital where I seem to be ushered in and out at great speed.

Diana