Having a pity party. Care to join me?

[Babs659]

Okay, I'm ready to start feeling better any day, now.  Seriously, I went from running 30 miles a week to barely being able to walk two miles.  I can't even walk up hills, let alone run, without having to stop.  My body just won't go.  My arms and legs are so heavy and weak feeling.  When I was dx about six months ago, I could still run a bit.  As time goes on I seem to be having less and less tolerance for exercise.  I get hit with the "whoozies."  It's really starting to get me depressed and feeling sorry for myself, and also scared.

My doctors are aware of my symptoms.  That's why the rheumy added Medrol to the Plaquenil.  Brain MRI and all standard BW was negative.  Overall, I am feeling a bit better, but not in the area of exercise.

Sometimes I just want to cry, but I'm not letting myself because I'm afraid that will feel like I am giving in to Sjs.

Feel free to join in the pity party!  We deserve it once in a while...

[Patze]

Hi Babs,

I'm sorry that you're feeling so poorly, and I sure hope that you feel better soon!

I'm sorry if you've mentioned it before (brain fog getting to me today, how about older age? ), but have you had your thyroid checked lately?  I know when it's off, it can cause some awful exhaustion among other issues for me.  How about your vitamin D and  vitamin B-12 levels?  I know I'm a lot more exhausted when my D & B-12 levels are off, and don't even mention the brain fog!  If you have, what where your levels?

I know that I was miserable the first year or so until I finally got a few doctors that believed me and worked with me, and believe me, I had some doctors that were dozies!!!  I'm glad that your doctor is working with you and that helps a lot, lucky you!

Hang in there, okay?  Sometimes it takes a while for things to come together.

Take care -

Patze

[eyeamdry]

Hi Babs-
Sorry to hear you went from running a long way to hardly being able to walk two miles.  That must be tough, for one who is or was athletic.

You didn't mention your age (don't need to) so I'm guessing you're younger than me.  I didn't run while I was young and don't now.  I'm after two years from dx having trouble walking.  when I get up from sitting, my legs are like rubber for a few minutes and I have to stand and "wait."  I'm spending most of my days on the couch and my doc is telling me he thinks "it's yeast."  Well, somehow i don't think so, but will have test results back in a week or so.

You may want to cry, but if you have dry eyes, it will hurt like the dickens.    You don't have to give in to SJS, but you may have to find a new normal for yourself.  My normal right now isn't very pretty.  i think I have some prednisone and maybe a dose of that will perk me up a bit.  (not suggesting people self-medicate.)  Maybe you will get some running back.  Are your legs weak?  Are you having muscular and/or joint problems?  Good luck and keep trying.  lucy

[newtosjs]

Oh Babs,
I am so with you on the pity party! 2 years ago I was a competitive marathon runner, now I walk an 18 minute mile. I am still fighting to maintain what I can. Have started going to a "Boot Camp" type class twice a week after talking to the instructor first and making sure he knows my limitations. I have a hard time being last, but I figure I am at least still moving! The stretching and weight training helps keep me from being so stiff and achy, I just can't do the cardio. Anything that keeps you moving is a good thing. Hang in there!

[irish]

Babs. Have you got any other symptoms that you find strange??? Things like a droopy eyelid, problems with swallowing or choking or food going up your nose when you eat. How about your voice sounding like you are plugged up all the time or like you have your head in a barrel?? Do you have any episodes when you feel like you can't catch your breath that improves when you sit down and rest.

There is an AI disease called myasthenia gravis and another of the symptoms are weakness in the legs and arms.When I have it bad I can't hardly pick up my feet and I shuffle like Tim Conway did on the Carol Burnett show. It hits you at strange times and rest will help you get over it. Also, makes it hard to lift up pots and pans or to open can with the hand can opener. Lots of little things that creep up slowly and come and go. Any stressor will make it worse--such as any exercise, loss of sleep, cold, etc.

I would ask you doc to check you for this disease if you think it is a possibility. I have so many AI diseases that cause weakness and I was just astounded when I found out I had this disease also. Doc needs to check your acetylcholine level and your anti-striated muscle antibodies. There are tests one can do on the muscles, but they are not always worth doing as the results can be confusing to say the least. Irish

[Babs659]

Thanks, all.  A bit of background to answer your questions.  I'm 49 years old.  I've had Severe Hashimoto's since age 13 which is closely monitored.

My vit D and iron were tested low and both are being treated.  D was 17, ferritin was 13, B12 was 400-500 range.  Had negative colonoscopy and celiac, but I am gluten and dairy sensitive so I avoid them.  This is a recent issue---around the same time I was dx with Sjs.

I am currently looking into the yeast connection and am considering the anti-candida diet.  I'll try anything at this point, though it's very restrictive.  I already can't eat wheat, dairy and also soy, due to its effect on the thyroid.  My doctor also suggested avoiding fruit and honey and any artificial sweetener, sucrose or sorbitol.

I just looked at my BW and can't find where I was ever tested for acetylcholine or anti-striated muscle antibodies.  No droopy eyelids or problems swallowing.  I do get slightly short of breath.  I do sometimes feel like my arms and hands don't work right.  Hard to explain.  My voice is slightly hoarse always which I think is the thyroid, GERD and asthma I have.

I did finally break down and cry this morning and my sweet husband just held me until I calmed down.

[lynnmarie219]

Hi Babs!

I'm sorry to hear that your physical ability to run and exercise like you used to has been affected, but glad to hear that you keep tying to keep your body going the best it can.....just don't overdo it too much as we usually have to pay for that with additional symptoms over the next few days! 

Yes you are right....we all need to have our own pity party once in a while and yes we all even break down sometimes...I think that is perfectly normal and even healthy for the emotional part of us! Your husband sounds very supportive and you are lucky to have him!

Hang in there!

[KYMOM]

Babs, What's a party without friends to join you.  Sorry about the problems with running.  I can relate.  Never ran but usually walked at a very fast pace for 5 miles at least four times a week.  Since Sjogren's developed problems with feet and foot doc had me get custom inserts.  Inserts only made it worse.  Now can walk two miles three or so times a week at a much slower pace.  My legs, knees and feet can't take much more than that.  Still have to ice my feet and take alieve when I get home.  Don't know if this is it or if it will improve.  Roxanne 

[Redetha1]

Don't leave me out of the party...I am retiring this year from teaching.  I just could not keep up the pace.  Please remember that we all have that time when we want to cry..Sometimes it helps me get back on track.  I will be thinking about you.  You are blessed to have an understanding husband.  So do I and that helps.  However, I am a talker and sometimes to vent here is great because no one judges you.  Hugs to you !!!!

[Katybarstool]

Can I come to the party too? I've had a weepy day today also. Tomorrow will be better. I hope it will be for you too.

Kathyx

[lynnmarie219]

Sending hugs to everyone at this "party"! Lets all hope things will be brighter for everybody very soon!

[Dolly Dimples]

  Count me in too Babs!   
                                     I am in the pits right now with this weird coldness enveloping my body, and my soooooooo sensitive eyes, we have had really rough

winds in this part of UK for 3 days straight and it's got me as down as I have ever been.   Pass the bottle please!!    Hugs  Dolly.
                                                                                           

[eyeamdry]

am currently looking into the yeast connection and am considering the anti-candida diet.  I'll try anything at this point, though it's very restrictive.  I already can't eat wheat, dairy and also soy, due to its effect on the thyroid.  My doctor also suggested avoiding fruit and honey and any artificial sweetener, sucrose or sorbitol.

Babs, my doctor is taking this approach with me.  My GP that is.  The yeast test results are back at his office and I had to change my appt and won't see him for another 10 days or so.  He needs me to go into his office, so I think that means he will be talking to me about this yeast thing.  I'm skeptical of this and his passion for natural remedies.  I'll report back on what he says.  If he can give me convincing results to try the yeast-free diet, I certainly will.   It seems we had this talk many years ago, before Sjogrens was an issue.
Lucy

[Babs659]

This is truly a life-altering experience.  There are so many things to mourn the loss of.  If I can no longer run, I've lost all my running friends, too, not just the exercise itself.  I miss that wonderful endorphin high that only running gives me. I had to give up pizza, ice cream and other foods I love due to sensitivities.  I kept up a happy face for quite a few months but I'm starting to think this is just the new me.  I'm afraid of getting really out of shape.  My family tends toward a big butt, and running has kept mine in control!

Hugs and kisses to everyone.  I think we are truly the only ones who really can understand, and not judge us.  It's hard and it bothers me that people look at me with skepticism.  They think I'm making this up.  Even people who know I used to be a runner.  Who in their right mind would pretend to feel this bad?