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Biomarker for Diffuse Scleroderma skin has been discovered!


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First Sclero Specialist Appt


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#1 uknlv18

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Posted 24 March 2011 - 09:09 AM

Hi Everyone,

Well I had my first appointment with the Scleroderma Specialist and it went good and bad I guess. We went over everything and I am right on track with some of the common symptoms and they have given me a synthetic saliva to help with the dry mouth which is going to be great! Got started on a new medication for my Raynaud's called Amlodipine, hopefully it won't have the same bad affects of the last medication, I was so dizzy I couldn't walk a foot without falling over! I am being referred to a podiatrist to help with my feet, which I am thrilled about!

That was the good news so to speak, bad news is my lungs are worse and I am now going to have to sleep sitting at an angle, no more lying flat, they are sending out an Occupational Therapist to do something about my bed. I guess I better make sure it is clean up here then, I keep the living room and kitchen as clean as possible, but upstairs things are shoved in every possible space! Its clean but not company clean (hehe).

The thing I am most upset about is they are not going to do anything for the pains I am having, my back they keep saying is mechanical which okay, that is fine, but can't they do something for the pain? And my abdominal pain and the pain in my torso have them baffled, although it is connective tissue points they don't think it is related to the Scleroderma, and I had 2 Sclero specialist Consultants, the Sclero Doctor and the head of the whole department trying to figure it out, they think it may be caused by some type of bacterial problem that is associated with Scleroderma and I am being sent for a breath test to see if I have this. If it isn't that I'm not sure what they are going to do. In the meantime I guess I just deal with the pain and hope for the best, but it is a bit upsetting as that is what is keeping me from doing things is the pain. :glare:

Trying to do more exercises and to stay up beat, it is hard and the depressions is getting on top of me more than I would like. But we are planning a trip to Paris in May, and I am going to get in as best shape as I can for the trip! Well thanks for listening!

Jean

#2 lizzie

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Posted 24 March 2011 - 12:52 PM

Hi Jean, At least there were some positives to your visit. I think one of the most difficult lessons for me on my scleroderma journey have been to accept that:
1. Not everything is due to scleroderma - we get unrelated illnesses too
2. Unless it is something that is clearly/likely due to scleroderma the rheumatologists tend not to be interested/ don't see it as their problem (and I have a very good rheumtologist!)
3. There are some things that can not be fixed, either because the cause of the symptom is unknown or when it is known, nothing much can be done about it.

I really do empathise with you re the back and abdominal problems. I have a chronic back problem (just missed out on a trip to Istanbul last weekend because it flared). I think a better person to see re your back pain is your general practitioner. They should be able to discuss and prescribe effective analgesia for you and will probably be more helpful than the rheumatologists! They may also be able to refer you to physio or specialist back pain services, or a pain clinic.

I also have abdominal pain. I had the breath test for bacterial overgrowth , as well as colonscopy, barium enema and abdomonal CT scan. Other than a finding of liver cysts (which are probably just an incidental finding) all were negative. The gastro doctor has decided that I have Irritable Bowel Syndrome.

Try to stay positive. Do see your general practitioner about the pain and keep looking forward to Paris ( It is my very favourite city and we go several times a year).

Lizzie

#3 Joelf

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Posted 24 March 2011 - 04:04 PM

Hi Jean,

Ah well; at least you've had good news as well as-not-so-good-news! ;) It's excellent that they've been able to help you with the Sjogrens and hopefully your Raynaud's will be a little more bearable with the new medication.

I'm sorry about your abdominal and back problems; I've had bad lower back pain a few times (nothing to do with Sclero) and I know it can be very debilitating. I did see a physiotherapist a few times and it mostly healed itself (it was muscular and didn't involve discs) but even now I'm very careful how I lift heavy objects and thankfully don't have to move things like heavy bales of hay anymore. Lizzie's advice about seeing your general practitioner is a good idea; perhaps he could refer you to a physiotherapist for your back or as she suggests, a pain clinic to help with your abdominal pain. It does sound as if your Sclero consultants are trying to figure out the problem by sending you for the breath test.

I'm sorry that you're feeling a bit depressed; here's a few :spoon: :spoon: :spoon: to replace the ones you've been kindly giving to other members and here's a :emoticons-group-hug: to go with them.

Enjoy Paris!! :VeryHappy:

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#4 Amanda Thorpe

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Posted 24 March 2011 - 06:22 PM

Hello Jean

Just the other day I was saying that doctors seem to often overlook pain and I guess it's because it's not one of the things that could kill us. They're more interested in the things that could and we all know scleroderma has plenty of those. However for those of us living with chronic pain it's an ever present and pressing issue. All of my scleroderma induced pain is in my feet and determines what I do on a daily basis. With the addition of 3 ulcers I can't even wear regular footwear if I go out, which ain't often, so I have to wear slippers/slipper boots. Pain even determines what I wear for crying out loud!

The breath test will check for bacterial overgrowth which I understand is treated by antibiotics, that's if you have it of course.

I think that being a little disappointed after the first appointment with a proclaimed scleroderma expert is unavoidable because our expectations are so high. Understandably we want them to fix everything or have an answer for anything and are deflated when they don't.

If you are feeling low more often than not you may want to consider some sort of counselling, scleroderma is an awful lot to deal with. Have a read of our emotional adjustment resources if you haven't already.

Take care and keep posting.
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#5 uknlv18

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Posted 25 March 2011 - 05:27 AM

Thanks for all the kind words everyone, and helping me put things in perspective. I am considering going to talk to someone, I'm leary of psychiatirists as I have been before and their answer always seemed to be more medication, but psychologist I think would help me. And you are right I do think I expected to go, in tell them what was wrong and they would give me a magic pill that would take away all my pains and I was having a bit of a paddy when they didn't. :temper-tantrum: I had even started preparing for the steriods hehe.

I am feeling much better today and am determined to get myself in better shape, if I am honest I think a lot of the pain is from lack of use. Now that I am no longer working I go from the bed to the couch to the computer chair, with a brief stop at the kitchen in between! I also think I have been using this diagnosis as an excuse to feel sorry for myself and revelling in everyone else feeling sorry for me to, oh poor me :crying: I do this on occasion but it has lasted longer because I felt I had a good excuse. I know I have limitations and cannot do all that I used to but it is time to smack myself upside the head (metophorically of course, although the way I hit it probably wouldn't hurt anyways :lol: ) and get my rear end in gear and start doing things. I have the trip to Paris and I have my new Dulcimer, and other things to do, and all I need is to look around and see that I ain't got it so bad.

Thank you again for all the kind comments, you guys are the best! :you-rock:

Cheers
Jean

#6 miocean

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Posted 25 March 2011 - 08:37 AM

Jean,
I am sorry you are having issues with pain :emoticon-crying-kleenex: and that there is no magic pill to fix it. You may want to investigate a chiropractor for your back pain but make sure X-rays are taken before he/she manipulates you.

I've always wanted to go to Paris! Enjoy yourself :emoticons-line-dance: I've discovered you just do what you can do and try to make the best of things.

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#7 mando621

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Posted 25 March 2011 - 08:40 AM

Hi Jean,

So you got a dulcimer!! Do you have any music, tableture yet? I mostly play mine from tab. If you tune it in DDAD there are tons of songs to play. You can even learn the fingering of chords and play along to tunes when people are singing.

I use a guitar strap to keep it on my lap. I had to screw in the nut to hold it, but it is definitely better than having it fall off your lap. You don't have to use a pick if you have trouble holding it. I like to use a pick because it brings out more sound.

I haven't played my dulcimer in more than a year now. I should really get it out and get it going. I find that I concentrate on one instrument most of the time. I received a new bow for my fiddle, and it is so nice to be able to play without so many squeeks and squawks. I can actually play close to session speed on some of my songs.

I hope you enjoy your music! Music is such an important part of life, I hope you find you can get your music fix.

Have a good weekend.


Mando (Lori)

#8 debonair susie

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Posted 25 March 2011 - 12:26 PM

Oh mando (Lori)...how did I KNOW you would be posting on Jean's thread...where musical instruments are involved?! :P

However, you are so so right, in that music is so wonderful, particularly for those of us with chronic illnesses, whther we play (as you are so talented) or listen and sit in awe of those who ARE talented...it is such wonderful therapy :emoticons-thankyou:
Special Hugs,

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#9 mando621

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Posted 25 March 2011 - 01:53 PM

Thanks Susie,

Jean, I have my first appointment with a sclero specialist on April 20. I hope it goes better than the other rheumatologist appointments I've had.

I am debating about going to a session on Monday evening. I don't like being out in the evening on a weeknight, but the prospect of being able to listen and play music with others is very tempting.

Mando. (Lori)

#10 Jeannie McClelland

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Posted 25 March 2011 - 03:40 PM

Jean and Mando - go for the music! Then when we get the ISN virtual sessions going via internet video conference, I can be in the audience and cheer like mad. (Unless you'd like someone to ting on a triangle every now and then. :) ) There is loads of evidence that music is good for just about everything that ails us.

And what music won't fix, a trip to Paris should! Envy, envy, green-eyed envy...

Jean, y'know, the back and flank pain could easily be from the Irritable Bowel Syndrome (IBS) and/or Small Intestinal Bacterial Overgrowth (SIBO). That's what mine feels like when I'm lax about diet and try to stretch out the antibiotic cycles (I take tetracycline and a week on/a week off seems to work best for me). The nice thing is that there are treatments that work pretty well and at least you will know what it is. I think we may one of the few groups of people who get really happy just to get a diagnosis. :)
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#11 uknlv18

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Posted 25 March 2011 - 04:15 PM

Hi Lori, I have it tuned to DAaa at the moment, had to get an electric tuner as I tried to do the online thing and couldn't get the tuning right, I had a pitch pipe for my violin. I found a website of all Dulcimer players that is really great and have been introduced to a group of folk musicians that play on a Wed night close by and am planning on going over to have a listen and when I get better a join in! I do not have any music for the Dulcimer yet, am working on getting the strumming right so it doesn't sound so twangy! I hope your appt goes really well, it makes the world of difference to talk to someone who knows the disease I found out.

Jeannie they are testing for that as they think that may be the cause for my pain, hoping it is that simple as that will help loads! And I will join in on the web cam once I can actually play a tune hehe

Thanks for all the support everyone and I am preparing for my Sclero withdrawal for the weekend! Have a great weekend and 'type' at you all on Monday!

:thank-you-2:

Jean

#12 enjoytheride

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Posted 26 March 2011 - 01:43 PM

I chuckled over your "company clean" remark. I can remember so many times my Mom would have to clean something before the plumber or electician came. She may not have had a working toilet but she was not going to have someone think she was a bad housekeeper. :)
I also agree with too much sitting being bad for the back. It's a sort of bad feedback loop where it hurts so you sit and the sitting makes it worse so you sit more. I hope that you can get some resolution for your pain whether chemical or activity. I do remember Jack Kennedy (the President) had a rocking chair for his bad back.

#13 queenie

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Posted 27 March 2011 - 06:05 PM

Hi Jean,
About the occupational therapist coming out to see you, I too have had them come out and assess me for my bed as I have to sleep sitting up a bit due to my breathing. There are two ways they deal with it; one way is to raise the head end of your bed with special blocks and the other way is to put an electric frame under your mattress which at the push of a button you can raise the bed to whatever position you want. This is the option I went for and it is great; I think this option is best as you can change position as and when you need to and it also helps to keep the pressure of the same place in your back if you are suffering with back pain. It also goes all the way up so you are bolt upright so if like me you have problems with actually getting up then this is a great help and takes away the need to be dependent on somebody else to help you get in and out of the bed. They can help you with many other things as well which I'm sure they will discuss with you when they do the visit.
I hope you have a lovely time in Paris.
Take care.
hugs and loves :emoticon-hug:
Queenie x