TIPS FOR DEALING WITH PEOPLE IN PAIN - GBS

A friend on Facebook recently posted this and it is a great list that very much applies to those recovering from GBS.

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

~Author Unknown
(From Fibro Brite, thanks for sharing Dorita!)
From: http://www.facebook.com/pages/Fibro-Affirmations/178819338805236?ref=stream
Fibro Affirmations

A Gift from my bout with Guillain Barre Syndrome - GBS: Occipital Neuralgia

One of the lovely things that Guillian Barre Syndrome likes to leave patients with is parting gifts; these can range from continued buggy feelings in their legs, fibromyalgia to permanent nerve damage.

In my case it is something called Occipital Neuralgia.

I wanted to post about it on the blog in the off chance that other recovering GBS patients might be sharing some of the same headache pain that I have and hopefully I can help offer suggestions to stop misdiagnosis.

I was hit with GBS in May 2009 and during my recovery at the neuro rehab facility a headache began to develop and nothing we threw at it seemed to help. Eventually it got to the point where I would just take a percocet and hope it would knock me out enough to get some rest. The next step was to move on to morphine which I really did not want to do.

Now how to describe this pain... It is as if lightening shocks radiate out from the base of my skull around where it meets my spine and the lightening branches out across the back and top of my head. Pressure on the back of my skull seems to trigger the pain so it makes for weird sleeping positions in the attempt to keep pressure off my head. At the rehab I would lay my head on the pillow and the moment pressure came down on my ear the pain would start and just continually pulse.

Eventually while at the rehab the neurologist stopped by to see how I was doing and suggested a nerve block to see if it would alleviate the pain. I received the injection and immediately passed out for the day. It felt like I finally had relief from the pain for the first time in a couple weeks. Unfortunately this relief did not last long, I had about a 3-4 day grace period before the headache returned.

With occipital nerve blocks, you are only supposed to receive 1 every 3 months. I couldn’t wait for the chance to get another to try it out again and see if it would last longer. In the meantime my recovery continued and I met with other doctors and when I mentioned the headaches they constantly referred to it as a migraine and began prescribing medicines as such to tackle it.

Finally the 3 month mark came and I was able to get another nerve block. After getting it I felt drowsy and had my husband drive me. This time I had about 1 week of relative relief. By this I mean a level 6 constant headache got knocked down to maybe a 2.

What doctors did not seem to understand and I kept trying to stress was that this was a constant headache that would gradually increase or decrease, there was no time that I did not have the headache. The easiest way to cope with the pain was buying really good light blocking curtains for the bedroom (my eyes get light sensitive and noise drives the pain up even more) and I would rest in the dark bedroom for hours on end just waiting for the pain to stop. I also found that a heating pad targeting my shoulders and skull would help take the edge off the pain.

This process went on from August 2009 until about October 2011.

The constant headache had become much worse and I went in to receive another nerve block. After receiving it and driving home the pain then began to branch down through my shoulders and back and the pain was much worse. After downing who knows what all pain pills in an attempt to find any sort of relief I was able to get back in to see the neurologist after a few days and we discussed alternatives to relieve the pain. Among the options I was given a 30mg sample of Cymbalta which while normally given out for depression has been found to stop diabetic neuropathy. I went home and began trying the Cymbalta.

Within 3 days my 2 year long headache had finally stopped.

Now I can’t say it was a cure but it has really helped me get back to where I want to be as far as going out and doing things. I still get a headache at times when I push my body too far but it at least has offered me a potential solution. When I go out and put too much constant stress on my body I usually pay for it and end up spending a week of bed rest inside my dark bedroom with all the lights out, the air conditioning at 72F and the heating pad on my shoulders and neck.

When the neurologist saw the positive response from the treatment with Cymbalta it was determined my headache is attributed to occipital neuralgia rather than a migraine. If we had figured this out earlier, a lot of pain could probably have been avoided. I now use a combination of a daily 30mg Cymbalta dose and a nerve block once every three months to manage the pain.


I do hope that if anyone else comes into a situation with similar headaches during their GBS recovery that this can help them find relief faster.

Keep driving forward!

EDIT: 9/18/2012
I am now being considered as a good candidate to try out Botox injections in my neck and shoulders. After I learn a little more about the process we may move forward on Oct 2.

EDIT: 9/26/2016
I recently went through a Ketamine Therapy Treatment and the constant 6 pain got knocked down to a 0-2 once the exhaustion of the whole process subsided. I am off Cymbalta now and have not had a nerve block for 6 months. I still take Soma and Hydrocodone at night to help keep the pain down. This is a HUGE improvement for me!!

Occipital Neuralgia Links:
http://www.webmd.com/migraines-headaches/occipital-neuralgia-symptoms-causes-treatments
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/headache/conditions/occipital_neuralgia.html
http://www.ninds.nih.gov/disorders/occipitalneuralgia/occipitalneuralgia.htm
http://en.wikipedia.org/wiki/Occipital_neuralgia

My most embarrassingly entertaining memory from my GBS ordeal

My most embarrassingly entertaining memory from my GBS ordeal

Some of this memory is jumbled so I might be combining several memories…

My mom and sister were in the room when I was at the hospital and we were practicing on trying to stand or at least moving around. Then I suddenly noticed something brown on the bed.

Oh god. My heart sank to the bottom of my stomach.
I just crapped myself. In front of my sister and mom.

I think there was a nurse in the room. Everything is very foggy for me to remember, I just remember feeling the embarrassment and shame creeping across my face and then the world was kind of swirly and I couldn’t keep track of where it was on the bed.

It wasn't just the embarassment of having gone on the bed, it was the fact i never even felt it!
Damn this stupid body, get back to working!!! My cheeks were probably red tomatoes.

Hehe, so there I am freaking out thinking I am sitting in my own crap and eventually my sis and the nurse calm me down I guess. I don't really remember anything else.

Evidently the feeding tube had come undone and dripped onto the bed.

I think I found that out pretty recently, like only a month or two ago; ya know, 3 years later I find out I didn’t really crap myself in front of my sister.

Heheh, so now people can start to tell what a prideful and vain person I am.

Hospitals really have no room for shame and pride. :)

GBS - Celebrate every achievement

When I was at the rehab I was reading a book and it had a little story in it that kind of stuck with me. Every time I would start to get frustrated with my progress I would try to remember the story.

A woman was running through the jungle and was being chased by a tiger. Ahead of her she saw a clearing of the trees. When she finally reached it she was met with a cliff. She looked behind her and saw the tigers coming close. She noticed a vine leading down the edge and climbed down. She then looked below her and saw two more tigers circling below her. She then looked back up only to see a mouse beginning to chew at the vine. She then looked to her side and saw a strawberry bush with the sweetest juiciest strawberry hanging in the leaves. She looked up. She looked down. She then plucked the strawberry and began to eat the most delicious strawberry she had ever tasted.

Everyday I would find something that would be my strawberry; whether it was being able taking a sip of cold water, finally be able to open a ketchup packet or stand for 20 seconds. With all the hard things we face in the road to recovery and just life in general, sometimes the achievements get lost and we don't take the time to acknowledge and truly appreciate them.

The story is from a book called Comfortable with Uncertainty: 108 Teachings by Pema Chodron.
http://www.amazon.com/Comfortable-Uncertainty-Teachings-Pema-Chodron/dp/1570629722
While the writing is generally from a Buddhist point of view, I believe that everyone can take something away from at least one of the short chapters.

GBS Groups on Facebook

This is by no means a complete list of online support groups for GBS but these are some of the ones I am most active in. If you or a loved one has been hit with GBS, please try reaching out to groups. It helps to know there are others in the same boat or at least who have experienced similar situations as you. It also helps to have a good place to vent where people know exactly where you are coming from.

Guillain-Barre' Syndrome Survivors
https://www.facebook.com/groups/38007116452/

Guillain-Barre Syndrome Survivors Network
https://www.facebook.com/groups/2379559053/

Guillain Barre Syndrome
https://www.facebook.com/groups/2585256706/

GBS Survivors!
https://www.facebook.com/groups/203039573042938/

Information about the Guillain–Barré syndrome (GBS)
https://www.facebook.com/pages/Information-about-the-GuillainBarr%C3%A9-syndrome-GBS/249044018888