Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Newbie


  • Please log in to reply
14 replies to this topic

#1 pinnygig

pinnygig

    Bronze Member

  • Members
  • PipPip
  • 14 posts
  • Location:Lincoln, UK

Posted 04 February 2010 - 07:29 AM

Hello everyone,

Just a quick new post to introduce myself. My current diagnosis is undifferentiated MCTD but I have Raynauds, Erythromelalgia, positive scl-70, query Sjorgens and a million different other symptoms (well, a few....;-)) The lack of any skin involvement seems to be the curio factor as far as I can make out.

I'm still going through the initial tests - lung function/echo are ok though :emoticons-yes:
Fabulous forum - looking forward to get stuck in with some questions!
Best wishes to all fellow sufferers out there :flowers:

#2 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 04 February 2010 - 07:55 AM

Hello Pinnygig

Welcome to the forum!

It's great that the initial lung function and echo haven't shown any problems. What symptoms do you have and did it take a long time to get a diagnosis? My diagnostic journey was a short one but for some people it can take years.

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#3 pinnygig

pinnygig

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 14 posts
  • Location:Lincoln, UK

Posted 04 February 2010 - 10:14 AM

Hi Amanda,

Thanks for the welcome.
Mine was (and is) a long road like most peoples. I've known for 10yrs ish that something was amiss. Firstly it was what seemed like circulation problems in my feet in hot weather. They'd swell, go purply black and be sort of itchy on the inside with a stretching sensation. It became so bad over the years that the sitting position (in hot places) became unbearable. It's bad standing as well, but eases massively with movement. Anyway, I eventually got to see a consultant who somehow made a diagnosis of Raynauds from it!! I suppose he paid more attention to the very occasional cold problems I experienced in my fingertips.
Over the same sort of period I've suffered stomach/chest problems. Again, the doctor says there's nothing wrong so you just get on with it, but I was hospitalised several times and no pain relief would work. They finally came up with a loose possible diagnosis of biliary or oesophageal spasm, but no treatment or investigations were done. Also terrible digestion problems - reflux/constipation etc.
Then seriously bad palpitations and breathlessness (again, I'm apparently being paranoid and suffering from anxiety).
Then I had someone grinding sand into my eyeballs of a night time! My it hurts! Again, doctor says nothing wrong. That's also ongoing for years.
Then I started having problems with pain in the crook of my elbow when on the phone. Couldn't hold phone to my ear for long as the pain would just get worse and worse. Graduated to really bad muscle 'burns' in my arms and legs like you get after intense exercise, but brought on by ridiculously minor stuff. Also very bad muscle aches in my thighs (although this could be connected to a completely worn disc at LS5 which is trapping a nerve - awaiting surgery).
Then last year I started having some 'episodes' of feeling really unwell. It just so happened when I was at the doctors I also had the symptoms in my legs/feet raging at the time. He referred me to a rheumatologist again.
Before getting my blood results, but after seeing the rheumatologist I fell really ill - like I had flu without the fever. I lost 20 pounds and was really unwell for a couple of months. Then the bloods came back raised RNP and scl70
I've also got vasculitis in my feet and problems with my hands and forearms going dead repeatedly throughout the night. The sensation in my fingertips is reduced. I think that's about it!!
Any thoughts or comments gratefully received!

#4 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 04 February 2010 - 12:28 PM

Hi Pinnygig,

Welcome to our Forum, and family. Sounds like you've had a rough go of it. It can be very frustrating when you feel that you are getting the brush off at the doctors office. I hope that someone will listen to you and give you the help that you need.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 04 February 2010 - 12:35 PM

Hi Pinnygig,

Welcome to the Forum. Sounds like you've got most of the symptoms to 'bag' a good diagnosis. Hopefully someone will put all the pieces together and get you started on appropriate treatment.

Are you by any chance related to a certain very nice brown guinea pig by the same name?
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#6 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 04 February 2010 - 01:02 PM

Hi Pinnygig

Just wanted to welcome you too. Sounds like you've had plenty going on for quite a while. These autoimmune things can take forever to diagnose because they are so complicated just like a huge tough puzzle, but eventually, along will come some answers. Is your rheumatologist a scleroderma expert by chance? Good luck with the rest of your tests. Do let us know how you make out with the results.
Sending good wishes your way!

#7 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 05 February 2010 - 09:16 AM

Hi Pinnypig

Welcome to this friendly & informative forum from another UK sufferer.

I have Systemic Limited Sclero but thankfully it didn't take 10 years to diagnose it!! ;)

It sounds like you have been having a really hard time with your symptoms & not a lot of help until recently; I'm so sorry. Hopefully your rheumatologist will now be able to sort out some medication that will make you feel a lot better; it must be very frustrating to know you aren't well & the doctors won't take you seriously!! :angry:

Good luck with the rest of your tests.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#8 pinnygig

pinnygig

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 14 posts
  • Location:Lincoln, UK

Posted 05 February 2010 - 09:16 AM

Thanks to you all for such a great welcome :thank-you:

Jeannie - I haven't had the pleasure of any acquaintance with or knowledge of any nice brown guinea pigs, but I'm sure Pinny (black and ginger) and Gig (brown and white) would both love to meet him/her ;)

#9 pinnygig

pinnygig

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 14 posts
  • Location:Lincoln, UK

Posted 14 February 2010 - 06:47 AM

Hello again,

I'm not sure that this is the most appropriate place to ask, but I think I'm still restricted as a newbie?

Is there anyone else out there who suffers with a really tired and aching tongue?!!!! I know it sounds ridiculous, but every now and again eating can be really difficult because of this and I've never read or heard of anyone else with the same problem. Anyone? :barf: (I know it's not the appropriate emoticon, but it's demonstrating the offending article! :P )

#10 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 14 February 2010 - 04:50 PM

Hi pinnygig (Love the name, by the way)!

Nothing more exasperating than to feel there is something wrong, yet bumping up against brick walls.

Please keep us posted as to how you are doing?
It is so difficult to be dealing with so many things and not have anything that "fits" yet?

Hopefully the doctors will pin down more definitive diagnoses?
In the meantime, please keep us posted as to what you may find out?
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#11 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 15 February 2010 - 10:43 AM

Pinnygig, not sure what you mean by tired tongue but I do have a few issues with my tongue in the past year. I think when I am chewing food somehow my tongue makes a twist. I end up biting it near the edge inward about half way back on my tongue. Of course once you bite it you continue to take little nips or quite hard nips it is almost like my teeth just bite my tongue right when it happens to be in the way. It is a quick jerking type bite, not a normal smooth bite. It is like having a lazy tongue as the tongue refuses to stay out of the way. When this happens I also end up biting my cheeks and then have those little sores to contend with. They sometimes take a couple weeks to go away. Years ago they would be gone overnight or within a day or two. I hope you enjoy our forum. It is a great place to ask questions and get different responses that might let you know methods of dealing with a situation that is taking place at that moment. Welcome aboard.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#12 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 15 February 2010 - 10:49 AM

Hello Pinnygig

Congrats on moving to the main forum! Hopefully others will join in with some ideas about your tongue issue, can't say I have experienced it myself.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#13 susieq40

susieq40

    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 15 February 2010 - 03:22 PM

Hey there, I know this last year I've had a lot of problems with sores on my tongue. They hurt so bad. There weren't like regular canker sores either. But swishing with really warm salt water seemed to help them go away quicker. I don't know about a tired tongue...but the rest of me is always exhausted. And I also have cramping in my feet. and they turn blue/purple because of Raynauds syndrome...But I hope you find a doctor that will put the pieces together..It's taken a long time for the pieces of my mystery to come together. We are here for you! Can't wait to get to know you better.

Susieq40

#14 erika

erika

    Silver Member

  • Members
  • PipPipPipPip
  • 106 posts

Posted 15 February 2010 - 10:23 PM

Hi Pinnygig,

the chest/digestion spasms, reflux (and heart palpitations) are very familliar to me. I have had that for 10 years and my doctors have diagnosed it as pollen allergy combined with food sensitivity. I found a relief in avoiding the food to which I am sensitive and this relief lasted two years. A month ago the spasms in the chest have started again (less in the bowel) and my general practitioner doctor is sending me to the cardiologist. I wonder if this many years lasting symptoms may be scleroderma and not allergy (or combined).
I also find your arms symptoms similar to mine (sometimes lifeless arms below elbows in the morning, hurting elbow etc...).
A month and a half ago my fingertips have started to thicken, my feet below have allready thicker and shiny skin and my face feels like lifting.
I dont have an official diagnosys yet but will go to reumatologist in 10 days. I guess they will find something this time.

Keep us informed.

Erika

#15 kaykay

kaykay

    Senior Bronze Member

  • Members
  • PipPipPip
  • 30 posts
  • Location:Boise Idaho

Posted 19 February 2010 - 05:51 AM

I'm on the tongue thing; do you have dysphagia? Because I think the tongue has to work extra hard to push food back and it gets tired. Sometimes I just spit a mouthful out rather than deal with swallowing it.