SPINE PAIN

[Kewanee]

So tired of the pain. Worse when I wake or in my chair very long but.....if I try to get around with my walker to long it feels like by low back will fall into itself.

What does SJS do to your spine? Do any of you have spine problems?

Kewanee

[Crabcakes]

I have spinal stenosis, but I do not believe it is SjS related. I have yet to be seen my the rheumie, and am waiting and waiting. What kind of spinal  problems are you experiencing?

[Kewanee]

Pretty much pain. Started in lower back and then attacked at waist and just above. Now it's up to my neck. Oh me. It wraps around to my ribs as well.

Don't like pain pills to much so I'm just bearing up pretty much the best I can.

Kewanee

[Patze]

Hi Kewanne,

I'm sorry to hear of your pain, what does your neuro/rheumy say about this?

Here's a big hug for you

( ( ( ( ( H U G ) ) ) ) )

Patze

[Mark54]

Have you pain checked out real soon! My wife had transverse myelitis caused by sjogrens. This may not be what you have but get checked out by a neuro. My wife is numb an the right side of her body from the chest on down to her toes.  She will be like this for the rest of her life. I'm not tying to scare you, I'm trying to prevent this from happening to anyone else.

God's blessings,

Mark....

[Kewanee]

Hi Kewanne,

I'm sorry to hear of your pain, what does your neuro/rheumy say about this?

Here's a big hug for you

( ( ( ( ( H U G ) ) ) ) )

Patze


Thank you Patze. Needed that.

[Kewanee]

Have you pain checked out real soon! My wife had transverse myelitis caused by sjogrens. This may not be what you have but get checked out by a neuro. My wife is numb an the right side of her body from the chest on down to her toes.  She will be like this for the rest of her life. I'm not tying to scare you, I'm trying to prevent this from happening to anyone else.

God's blessings,

Mark....

Thank you Mark. I had heard about this before. Oh your poor dear wife. Did she ever suffer the pain of it? She probably feels stiff I would think. There is a forum for people with this.

I'm going to see my Rheumy next week and will call my Neuro....again. I don't think many know this can happen in SJS and you certainly don't see many here, at least not talking about it. I appreciate your post.
Thank you and may your wife find some joy in spite of it,
Kewanee

[Mark54]

Kewanee,
      My wife is on lyrica for the pain. she also takes a cocktail of other meds to help with all of her sjogrens related problems. The transverse myelitis has left scar tissue on the T7 area of her spine and that is why she will be numb from her chest down to her toes for the rest of her life. She was wheel chair bound for a while but over the last few years she has learned to walk with her foot and leg being numb. She has to be real careful so she doesn't fall.
     She was on the transverse myelitis forum for a time. That is where she got a real understanding of this affliction. We praise God that she doesn't have any active infection in her spine now. One thing about sjogrens, you never know what it will attack or when!! I pray that you doctors visit goes well. DO BE AFRAID TO ASK QUESTIONS!

God's blessings,

Marl....

[Mark54]

Thats suppose to be: DON"T BE AFRAID TO ASK QUESTIONS!

Mark....

[Kewanee]

Thats suppose to be: DON"T BE AFRAID TO ASK QUESTIONS!

Mark....

Thank you again Mark. Lyrica. I'll remember that one. So glad you two pursued her wallking.
I still can some with aids but have dropped foot which makes AFO's a good idea. I hope your wife can stay out of the wheel chair for the most part.

Kewanee

Isa.33:24 Rev.21:4

[Maria3667]

Hi Kewanee,

It's never been proven my spine pain is due to Sjogren's... But it did manifest itself around the same time.

However after sorting out many supplements with my rheumy, we came across DHEA. Lo and behold, for some reason or other this almost quenches the back pain completely. Why it works in me is a mystery... as in clinical trials DHEA doesn't prove to be effective in everyone with Sjogren's.

I take 100 mgs/day.

Blessings,
Maria

[Kewanee]

I've wondered about DHEA and and any side affects. I've been on prednisone for a year or more and just cut down to 10mg. I'm starting to look like a balloon.
I've heard it does not work for SLS. I got PMR as well and they gave it to me for that. I don't know how they knew the difference between my SJS and the PMR. Hmmm.

Going to check into the DHEA.

Kewanee