wow.
I am speechless I had NO idea you were facing all this on a daily basis!

It's unbelievable what I hear some people go thru, but this pretty much takes the cake.
You bring SO much to this forum - it just wouldn't be the same without you.
The fact that you are able to stay positive leaves me dumbstruck.
But you go way above THAT even! You maintain a sense of humor to boot!

You've got a dimension of strength like I've never seen.
You are one special lady.

Good grief Fiona. I too am speechless it just puts everything into prospective. You know people often say to me how unlucky I've been over the years with my back problem and it's debilitation and managing my daughter with Special Needs on top of all that. I say ah you know it's all relative. But it could be a lot worse etc. Mine isn't terminal. I can get about. I've a good sense of humour etc. But Fiona after reading your amazing post I'm dumbfounded. You have soooo much going on in your life and yet you come across so strong and positive I do sympathise also with you losing your mum and sister. Thats very hard. I lost my mum some years back and boy is that hard. I hope you aren't too uncomfortable with all you have going on and you make damn sure those scs's stay put. Ya hear

Thanks for the kind words. My faith is what has gotten me through all this, along with a very wonderful husband.

As far as the SCS remotes...they'll have to pry them out of my cold, dying hands

Fiona, wow! I just cannot believe everything you have been through and that you are going through every day Everyone is so right that you are so strong and such a great positive person that adds a lot to this group I am sorry to hear about the spinal fluid issue and I am anxious to see what your pain doctor says. I do know about auto immune diseases because my mom has them and now they are finding out I do too. For her treatment she has to do injections all the time to try to raise her white count, it makes me so sad to see her go through this and I constantly worry about her as she is exposed to many diseases and germs through her job Anyway, I am so very sorry that you having additional problems which might be because the stim. You have always been a great friend to me and I hate to know that you are dealing with all of this I am definitely keeping you in my prayers and I hope that something will be done in order to give you pain relief and not cause any of your other diseases to get worse. Take care and thank you so much for all your contributions to the forum (as well as all your great support and advice you have given to me)! BIG'sTara

I am very intrigued by this concept. I had never even heard of this before....but ever since Fiona posted this thread, it makes me wonder about a few things and whether this may have something to do with this 'pressure'...

Do any of you feel a 'tightening/pressure' feeling when you first ramp up the unit? When I turn mine completely off for awhile - of course the burning neuropathy immediately shows it's ugly existance.........so I turn the unit on....sllooowly and when I FIRST start feeling the stim kicking in, it's like there is a pressure issue, and then after having it on for awhile, THAT's when the back pain issues kick in.
Like I've said before, back issues never were an issue in my case...
But this 'pressure/grabbing' sensations ends up taking a toll on my back.
I WONDER if this has something to do with this 'spinal fluid pressue' thing Fiona has brought up.

I will certainly ask about this at my next appointment.
Jackie, does this sound like what you may be dealing with as well??
Maybe several of us can ask about this issue at our Dr's appt's and compare notes.....

I left a message with my pain mgmt. dr. a few days ago about this and so far have heard nothing from his office. Will try to call again today to get some kind of information about whether this is normal.

I have what I would call a 'pulse' in my stomach/hips when I have my stim on at a certain level. And I have to turn it down slightly. Gosh Rae if its affecting your back you should definitely check it out. I must say for the past couple of nights I have that HORRID burning back in my legs even though Ive my stim on. At times I thought was it actually aggravating the burning......or maybe just having an 'off' day!