Author Topic: Just when I think I have a clue!  (Read 3829 times)


  • Guest
Just when I think I have a clue!
« on: June 15, 2009, 04:50:00 AM »
I was diagnosed in December with Hashimoto's, January -Sjogren's, February - Fybromyalga, March - Lupus and arthritis. Changed their minds on the SLE, that was the good news!  ;D I have been lurking on the boards and it was nice to hear others talk about the problems of pain and fatigue that I deal with daily. For 2 years I was in therapy, (because I was depressed and presumably crazy to feel so bad!) It has been strange for a bad diagnosis to be good news. But nice to go back to the pain Doc who told my employer that I was fit for work and nothing wrong with me.

I have been on Lyrica, Evoxac, Planquinil and restasis since March and it helps tremendously. I am currently disabled, Social Security says so, and finally this week my employer of 16 years admits that I am disabled. All good news and I think I can try to manage. I have a great new pain Doctor who took me off hydrocodone and put me on a Fentanyl patch. This has been a world of improvement and my pain level most days in down from 7 -9 to a much better 3 -4. This week I got too much sun. The next day I had the mylar rash and a boil in a very uncomfortable spot. The day after I started coughing. This morning I don't even know if I should call my GP or my Rhemy Doctor. I have no idea if I could or should take antibiotics. I also know that no one will care about my new symptoms that seem to be Raynaud's disease? Does anyone else have this disorder? I have noticed for months that I have no tolerance for temperature change, I have to have 72 degrees all the time. I no longer sweat and heat up very quickly. Last night after a coughing spasm, my hands feet and nose were suddenly ice cold and dead white. My fingers and nose were numb! Now my nose and fingers are very swollen, my cheeks are bright red again and everything hurts. Does this sound like Raynaud's disease? How is this treated?

So, it's early morning here and I have had no sleep and not sure if I should call my Rhemy Doctor for my terrible chest and cough or my GP who has not seen me since my diagnosis. I feel lost and ignorant again this morning just like after my first diagnosis. HELP!
« Last Edit: June 15, 2009, 04:52:23 AM by robino5454 »


  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9210
Re: Just when I think I have a clue!
« Reply #1 on: June 15, 2009, 09:33:04 AM »
Hi Robino  :)

Welcome to Sjogren's world. Well - it sounds as though 2009 hasn't been your year!!  I remember the feeling. 2004 wasn't my year, with a collection of dxs arriving within months of each other.

Are you on thyroid medication? An underactive thyroid can cause severe depression. I was treated for depression for 2 years before anyone did a blood test which explained why the anti depressants weren't working. It was Hashimotos and I felt soooo much better once I was on thyroid meds.

I don't have Reynauds but some do and I'm sure they'll be along. There is treatment for it.

The trouble with having Sjogren's is it doesn't stop you getting anything else. You could have picked up a virus that is making you cough. I'd use a GP as a first port of call, but I'm in the UK so it might be different for you. If you have a virus there is absolutely no point taking antibiotics. If you have a chest infection, there is - so seeing a doc is the way to go.

Take care - Scottie  :)   (our home page)   (find our chat times here!)  (way to chat + nickname and #Sjogrensworld)

Never do tomorrow what you can put off till the day after tomorrow!


  • Guest
Re: Just when I think I have a clue!
« Reply #2 on: June 15, 2009, 11:11:40 AM »
Your reactions sound more severe than I've heard Raynaud's to be, but it's a tricky illness so that could be what you're dealing with.

I've had Raynaud's since high school, and I've never heard of a treatment.  My doctors have always just told me to be careful of temperature changes.  If it's cold, I have to wear gloves (sometimes even inside), I can't be in places that crank the A.C., and I also respond to heat dramatically with swelling of my fingers and feet (I have to shift my rings around a lot in the summer).   

As for your chest/cough, do you have any shortness of breath or pain when breathing?  SJS can create lung issues.  I've had pleurisy twice, myself.  If you just have a bad cough, I'd see the GP.  If it comes with other symptoms (lung pain, etc.), call your rheum and see what he/she thinks.

It sounds like your body is freaking out with the rapid development of all of these illnesses.  I've told this story on these boards before, but my case was kind of like that.  I developed Hashimoto's in 2004, which was diagnosed after my whole body went arthritic.   A few months before, I had my first case of pleurisy (ouch) and a second a few months after Hashimoto's.  I developed pneumonia shortly before the second round of pleurisy.  Last spring, I was diagnosed with SJS and mixed connective tissue disease. 

When each new illness shows up, it comes with a ton of symptoms.  I think it is because my body just can't handle all of the antibody activity and starts reacting in weird ways.  As I get whichever disease is primarily at fault under control, the weird symptoms become less of an issue and I just have normal symptoms (levoxyl helped w/ regular thyroid issues and arthritis, plaquenil settled down a lot of other problems, etc.).  Mostly, I find it's a case of resting A LOT, taking it easy, not pushing myself too hard, and giving treatments time to work.  Many take weeks or even months to really kick in. 

I hope that you get some answers and feel better soon.


  • Guest
Re: Just when I think I have a clue!
« Reply #3 on: July 04, 2009, 06:38:05 AM »
Well for 2 years my stubborn gp kept sending me to drs until one made a diagnosis of indolent lymphoma (lymphoma that is progressing at a very slow rate) which in retrospect I think was just a label they slapped on that fit the best. In those 2 year I had one dr tell me he was sure it was Cancer but durn it - I wasn't showing the symptoms he thought I should be and I wasn't sick enough. Well, excuuuusssse me!  :P  Being on this site you WOULD believe all the tests that got run on me. I didn't have a PET or bone marrow but about everything else.

So really it was a somewhat relief to be diagnosed March 2009 with Sjogrens though this disease is also sooo individualized and everyone "progresses" differently.

I thought Reynaurds was where it restricted the blood flow (blood vessels contract) to this fingers and toes. Your symptoms do not sound like Renaurds. I get it in the 2 middle fingers of my right hand during the wintertime. My dr said there was a cream to help it that a pharmasist in town developed but mine has never been bad enough to use it.


  • Hero Member
  • *****
  • Posts: 6705
Re: Just when I think I have a clue!
« Reply #4 on: July 04, 2009, 08:07:34 AM »
Hi robino5454,

Let me also welcome you to the SJS World!  Boy, it does sound like 2009 has not been to kind to you!

I see that you have Hashimoto's, but you don't mention a med for it; are you on any meds for your thyroid?  If not, can you see your endo?  Otherwise, I would go see your primary if you can, it sounds like there might be something else going on. 

I don't know if you have Raynaud's or not, but I do have that mess along with Hashimoto's, SICCA, Fibro, and who knows what else.  I find that as the temperature goes down, my fingers/hands/feet (nose and lips now do too) go blue very easy, but they don't swell.  Once I start to warm up, then they can swell fairly fast, turn a bright red (like a sunburn), and they often hurt.

Hang in there, and keep us updated, okay?

Take care -

Our home page
Live chats

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen