Hello all...Just wanted to VENT and tell everyone how much I HATE this flipping disease!

I am so sick and tired of feeling like this! I hate sleeping all the time and needing constant IV IG - though I do love the stuff!

I hate having scars all over my body and feeling like sh&t all of the time!
I hate having hair all over me and being 50 lbs overweight!
I hate being in constant pain with NO answers as to WHY I'm hurting like this!

The pain is just making me plain mean! I think the only break I've really had from it was in the hospital when I was given 2 pain pills and some morphine.......I was able to MOVE without hurting....it was incredible! I've even tried that Fentanyl (sp?) pain patch without any relief........I've had MRI after MRI. Catscan after catscan. There is no reason to hurt like this, but I do!

I DID see a guy here in town that dx'ed me with severe nerve damage, but my neuro strongly disagreed.....I just don't know which way is up right now!

Sorry for venting!

Erin

Erin, I am so sorry you are in such pain. It is boggling my mind. There has to be something they can do for you. Have you discussed this with an internist? What about a nerve biopsy? I know, invasive and painful.

It's so odd. Is the pain all over the place? Like how the flu or a high fever feels? If you press on your muscles, do they hurt? I have to wonder what the mechanism is if Fentanyl isn't even working. Has anyone tried Lidocaine patches to test to see if it is nerve-related? It's not a 100% test but may give your neuro a clue. You can't overuse them with MG, it would be dangerous. But maybe a "test" on one area to see. Ask your neuro about that.

Someone should be able to figure this out for you. Pain needs to be taken care of. It is EXHAUSTING. I know people who live with chronic pain and they are amazing, in my view. It's so very hard.

I wish I could do more. I wondered why you were a bit quiet lately. Does anything help? Again, I'm very sorry you're hurting.

Annie

Erin, I am so sorry you are suffering like this. There has to be a reason for the pain...they just haven't found it yet. You have been through so much. I sure hope you get some relief soon. Take care and know we are all pulling for you.

Big Hugs,
Pat

Hi Erin!

Glad you vented!! May not change anything - - but sure feels good at the moment!!! I am so sorry that you are having such pain. It's just not fair.

Don't let the docs off the hook - -pain is a vicious, exhausting circle as you know and you do not deserve to live with it.

Hope you have some better days real soon!!
Sue

I wish there were some words I could say that would relieve your pain and discomfort.
You are a constant positive personality with warmth and sincerity, I wish you nothing but relief and just a stinking break from all this crappy stuff.
youre a sweetheart, and you certainly dont deserve constant pain.

So sorry to hear that you are not feeling well Erin. I am praying for you.

Blessing for you,
Christy

Hey sweetie! THanks so much for your kind words! I DID have all over pain until I started on the Neurotin (sp?) - it had spread to my hands and arms - just everywhere. It was a deep, burning, to the bone pain that woke me up crying. Now that I am on the Neurotin, it has relieved that pain, but my back pain has just gotten worse and worse. It has gotten to the point that walking a few feet causes tears.
I have tried stretching, yoga, massage, everything under the sun and it will not go away. At this point the only thing that numbs it for a brief period is pain meds - norco to be exact.
This is no way to live. I had Dr. I give me another nerve test but he found only minor problems - the other guy (a specialist) found tons of problems, but I need another opinion.
It could be OB/GYN related. I don't know. What I do know is that this cannot continue. I can't take it!
I think it is the unknown that scares me....you know?
I need to be able to get around on the days that I feel well but I just can't. I don't know what I would do if I didn't have pain meds, but have to find the SOURCE of the pain in order to relieve it.
I have tried the Lidocaine patch, but it really messes with my breathing.
My back brace gives me a few minutes of relief..but only a few.
This is really scaring me.
I also factor in my enormous weight gain..my body simply wasn't meant to carry around this much fat. I am now 170 lbs. My normal weight is around 110-125, however I can;t lose the weight unless I am mobile - something I am NOT now.
Sorry for going on and on......
At this point I am willing to take ANY test given to me - anything to figure this out.
Erin

Hey hon! Thank you - you are so sweet! How are you doing?

I know there is something going on ~ they just have to figure it out before I go bonkers!

I have become a shell of my former self. It is just so upsetting to feel so helpless. MG is bad enough without the added pain of chronic back pain......

Enough whining.....how have YOU been? Your hubby?

Love,
Erin

Hi Allen! Thank you so much!

If you are a praying person, please do so for me. I know that something is wrong, but don't know what it is quite yet!

I just want to feel better to take care of my fellas....I hate being a burden!

How are YOU feeling?

Love,
Erin

Hi Sue!

You are soooo right about being able to vent! I just miss my former self!

I see my PCP on Wednesday and have PT on Monday so maybe that will clear up a few things. I truly wonder if this is OB/GYN related. I have always had problems in that dept!

I am going to BEG for stronger pain meds so I can get through the day - all in hopes of retaining a sense of normalcy and losing weight.

How are you feeling?

LOve,
Erin