I thought I had this under control

Hi everyone!

I've been a bit MIA for a while because of some health issues that arose in the last year.

If you read my story before, you might know a bit of my background but just to give you a quick backstory, I had GBS about 20 years ago and yes I've dealt with the consequences as they have been part of my life but never thought I would be here today sharing more experiences.

June 26, 2014 I fell down some stairs and rushed to ER because out of all the falls, this was by far the worst fall of all.

I told my doctors (Neuro and PCP) that my back pain was getting worse. They brushed it off as saying it was part of the whole nervous system "failure" and that I have to keep speaking to my psychologist to understand that it's not a separate issue.

Months go by and had to leave my job because I could no longer put a sentence together as I am a Journalist.

About a month ago (a year after my fall and my health in complete deterioration) she tells me I now have to go to pain management because my health has been declining for a year (ummm yes..I fell a year ago!) At this point, I'm not even worried about the burn as my shoulder is becoming so unbearable.

I head to pain management and said "Please...enough with the pills, I need answers on this shoulder that has prevented me from working because the pain is so bad." The Dr asks why I'm crying and I show him my shoulder that is all taped up with the kinetic tape and even walk around with a tens unit (portable one). He writes on the note pad "treat Guillan Barre and Shoulder"..ok so no treatment yet (think about this for a minute)...another 3 weeks pass and I can barely make it to my appointment. I have ice packs, tape, and tens unit.

The doctor walks in with an anesthesiologist and at this point I have heard of cortisone shots so I’m in complete excitement that I will have some relief. The doctors (3 in room) begin to examine me and they say “Have you ever heard of CRPS?”…No! What is that? They begin to tell me that it happens when some trauma has happened. They will determine what type at my next appointment which is after MRI on August 7th. The anesthesiologist refused to touch me due to my health history so here I am with so much pain. No amount of medicine will take it away.

Mind you, if I mention that this came from a fall, they tell me to call my pain psychologist because I need to “Understand” that this is a whole failure.

Am I wrong for being upset that they waited so long to tell me this or do I have to look at it as a whole?

I think if this shoulder would have been caught on time, I would be ok today and not worry about this CRPS

I know I’m usually more positive but I need a break at this point :(

Have you seen the results of your MRI? How much of your body was affected by the gullian-barre? Did they just do an MRI on your shoulder? If so, you should insist that they do the spine as well.

Hope you get some relief soon

I went to ER last night and my arm was so cold and turning purple that they called my pain doctors to come down. They gave me a shot of Stellat Ganglion…half my face is paralyzed which is temporary and my throat has a tiny hole. But I’m at a level 5! Never thought I’d say that. I was diagnosed with CRPS so now they as well as myself understand the excruciating pain.

Here is my mri Charles:
Evaluate for structural damage, left shoulder pain, h/o GBS Left shoulder pain

None available

Multiplanar multisequence images were obtained of the left shoulder without contrast.

No full-thickness rotator cuff tear is seen. There is some increased signal intensity and thickening within the posterior to mid fibers of the distal supraspinatus which appears moderate. The infraspinatus and subscapularis appear normal. No fatty atrophy or muscle edema is seen in the rotator cuff. There is a small subacromial bursal collection and there is moderate narrowing with a mild amount of edema in the AC joint. A small spur is noted along the inferior margin of the acromion.

The glenohumeral joint and labrum appear normal. The biceps is intact and within normal limits. No fractures or osseous lesions are seen. The neurovascular structures appear normal.

Moderate supraspinatus tendinosis.

Moderate acromioclavicular osteoarthritis with a inferior spur present and a small subacromial bursitis.

Oh and I will have a total of 6 SG done

The reason I say to insist on having a spinal MRI, spinal stenosis needs to be ruled out. Even as far back as 1995, my neurologist warned me that spinal stenosis is likely after GBS. It is a form of arthritis that causes calcium to be deposited in the spinal cavity causing constriction of the spinal cord and can cause most of the symptoms that you described

I will definitely look into it and bring it up to my doctor’s! My back has always been an issue.

I recently found out that I have developed spinal stenosis in the vertebrae below the level affected by my GBS. My orthopedic doctor says that they can do Lazer surgery to make room for my spinal cord and restore full use of my legs

I have an appointment with an ortho next week as well. This is my first time they referred me to one. I feel like if I bring them a diagnosis…they brush it off. I get they are human and have good days and bad days. But I’m not sure if you have had the same experience as me. It’s frustrating but it becomes a head butting game. Like I have to leave my knowledge at home lol

I actually discovered that I have it by accident. I was experiencing popping and grinding in my right knee and weakness in my right leg, they took x-rays of my leg and back suspecting cyatica. I have run into so many doctors that have never heard of GBS. They found that I had a complete ACL tear and a torn meniscus. I just had reconstructive surgery for the knee and the back in four weeks

Just don’t let them dismiss the possibility of spinal stenosis, everyone I know who have had GBS has developed it and the number of people in this support group who have it will surprise you

The day after I went to the ER, I woke up with a nerve or artery (not sure what it was) that runs through the neck up down to arm aggregated and it was sticking out…you could notice just by looking at it. I had my pain management appointment that day and had my brother-in-law take me who is the toughest guy I know.* I don’t let many people know about what I go through and the extent but they do notice I no longer come around or I don’t invite them over because I don’t want them to see me this way…especially kids because they think I’m like a kid because I love to play.* Anyway, I thought he could handle all this and hearing the doctors talk became real to him. Having him rush out of room because my arm was too cold and my shoulder was raised and they just wanted to inject me to get blood flow going so the arm doesn’t turn like those pictures I saw on Google :frowning: when he cam back to room he didn’t want to talk and stayed quiet all the way home. I believe the men in my life have a problem processing what I go through. With half my face paralyzed and a bandage on my neck I asked if he was OK (my voice was very raspy). I’m more concerned with people I open up to even family because they really get effected when knowing the seriousness. Keep in mind, I just told my 20 year old son that I was paralyzed with GBS…my psychologist thought he should know and if needed, he would be referred to one as well. My “husband” is also having a hard time. I hid my pain and went to my appointments alone til I no longer could. Some people I worked with caught me sitting down and sweating but I said I was fine…went back to work. I get judged by the way I look on the outside but recently my outside is showing signs. Sorry if I’m just babbling off but I just don’t get why the men in my life who have gone to doctor with me have all had the same reaction. They shut down and won’t look at me or joke with me like they used to.

I’m not surprised at your brother in law’s reaction, as a guy, we fix things, that’s just what we do. Anyone who has never experienced it first hand has no idea of the pain, the physical challenges and that relentless stinging sensation.I really believe that a lot of people think that we are faking it.
I would like very much to give you a big hug, and although I know that there is nothing anyone can do to ease the pain, at least I do understand

Thanks Charles! It’s true…men are fixers for sure. I will keep you updated on this shoulder :slight_smile:

Hey there! I haven’t heard from you for a while… What have they found?

Hopefully you have gotten at least some relief.