AnonymousOctober 2, 2011 at 4:15 pm
I post from time to time and read some threads on occasion.
I developed gbs in February of 2007 and was paralised from head to toe. I was sent home from the ER five times with the diagnosis of anxiety before a doctor with some sense got it right.I wound up in the icu with lots of tubes and electrodes in me,the funny thing is I didn’t realize how bad off I was until I hit the icu.The reason being is that I was relived that there was a name to my condition and there was a treatment.I looked around the icu and was suddenly struck with the realisation that I was in a bit of trouble.
I was in hospital for about a month and I was really struggling to get back to some semblance of normalcy.After about two weeks out of the hospital I noticed a great deal of what felt like pressure in the backs of my legs.I thought it would go away after a bit but,NOOOOO.
After about nine months I was walking again but,the pressure turned to pain…Excruciating pain. I tried all sorts of neuro drugs that had no effect at all. I went to several doctors that had little insight into what was going on and even less comppasion.After a flip out in the hospital I was referred to a pain specialist who tried various drugs and procedures until he settled on hydromorphone cotin. It isn’t easy even with the drugs. about two weeks ago things changed for the worse.I developed pain in my groin and the intensity of the pain in my legs increased greatly.At this point I don’t know if my pain specialist will treat this as a serious issue or not.I do know that I’ll be shoed out of the er should I decide to go there.I’m treated like a criminal in the hospitals and the pharmacies.One thing I have come to realize is that there is as much narcotics bashing on this site as there is in a local coffee shop.The tisk,tisk attitude of some of the people here is not at all helpful it makes some people feel worse about themselves than they already are.
I’m now frustrated,depressed and,angry.I didn’t ask for this disease and I certainly never wanted it however,I’m fighting for my life and sanity.It sounds so dramatic but,it’s true.When you deal with chronic pain it does things to you,bad things.I don’t know where to turn and have no idea where to go….I’m feeling very lost.I know I’m not the only one here feeling this way….we are a group of thoroughly misunderstood people and have to fight a great deal of misinformed and ignorant people.We are fighting an unseen war every day of our lives with no medals to show the suffering we go through.I am very weary of the fight.
AnonymousOctober 3, 2011 at 9:14 am
Please be encouraged. As you stated, this is a fight….but you can be victorious. No, I’m not saying you’ll necessarily return to your pre GBS “self”, but things can certainly improve. Did you receive IVIG or PE? What type of chronic pain are you experiencing? Nerve pain, etc.? Are you mobile?
AnonymousOctober 3, 2011 at 2:48 pm
You’re right, Grimm; very eloquently said.
Be brave…be patient.
God help us all.
Check your mattress, maybe it needs more support; sleep in the most comfortable position you can find; it helps me to have my hands up by my ears; the hand pain lessens that way. Then when that pain lessens, I place my hands by my sides (my shoulder-pain/arm-pain is now agony), and sometimes I can drop off to sleep for a little while.
It is what it is.
Try to find something in your day to enjoy; we still have a life, and there will still be happy moments though we live in pain.
AnonymousOctober 3, 2011 at 11:33 pm
I’ve been around this site for a while and seen all sorts of post. Bottom line – each of responds differently. You have to find a doctor that will work with you to treat you pain and that is not easy. Right now I am on Neuronton sp? and 30 mg MS contin every 12 hours. It looks like the morphine dosage is going to have to go up sometime in the near future.
Some doctors will say that narcotics are not effective against neuropathy pain. I’m not a doctor, but I know what I feel and know what works for me. That does NOT mean it will work for you, but it might.
I was diagnosed with CIDP in 2005 and have been very slowly circling the drain ever since. It a good thing that things are moving slowly. At my age I might get hurt if I fell off and things were going faster :rolleyes:
AnonymousOctober 4, 2011 at 9:01 am
I know what it is like to flip out from pain while in hospital. My pain was from a bed sore, I was on fire constantly and suffered over a month until I got transfered to a different hospital, they had three wound doctors treat me. They also treated my GBS with pain meds, pe treatments and rehab. A different hospital made a world of difference,
Don’t worry about the tisk, tisk attitudes or being made to feel like a criminal, keep searching until you get a doctor to work with your pain.
My pain never went away but became easier to live with and has lessened over time.
We all get weary with GBS/CIDP, try not to let it keep you down.
Best of luck to you.
Shirley—GBS Oct. 2007
AnonymousOctober 4, 2011 at 5:45 pm
Hey Tina & group,
I received IVIG.The pain I’m experiencing is in my lower back as I have two herniated discs and one ruptured however,since the gbs I have excruciating leg pain.The pain is from the waist down but,the legs are a mess.Last week I was in the basement collecting some stuff to bring up stairs and when I crouched down to gather a few things,It felt like someone shoved thick knitting needles in behind my knees.I just said “I’m done “and figured that I would go back to some semblance of normal the next day.Since then I have come to the conclusion that something went horribly wrong that day.
I have called the pain specialist and the secretary practically said”sucks to be you”and that I don’t get to see him till the 12th of this month.I’m hurting so very badly and I am rapidly running out of pain meds….I don’t know what to do.
I know I’m not the only one suffering from depression that is directly related to post gbs residuals but,It’s getting really bad the past several days.
I would really like to have an annual get together to talk to alot of you face to face.
One question I would like to ask of anyone is…Has your condition worsend in the last few months or years.I’ve had people tell me that it doesn’t degenerate but,I have the feeling that it does indeed worsen.I don’t know …maybe I am going crazy.My state of mind isn’t what it was a little while ago.
I would give up everything I own to go back to the way I was before I was struck with gbs.I don’t want to whine and try to make your day crappy,it’s just that I feel that I can speak freely with other people that have survived the gbs but are still dealing with the after effects.
AnonymousOctober 5, 2011 at 11:34 pm
First of all you need to find new doctors and NOT pain specialist, their job is to get you off pain meds, not keep you on them believe it or not!!!! I went thru a few neuros before they figured out that I had MULTIPLE conditions going on that needed to be treated differently. I am still on pain meds but since the underlying conditions are being treated correctly the pain has decreased significantly thus less pain medications. Alot less than what I was on before…… It is a pain in the as* but once you find the right doctor things will get better…..
PS… Look into getting into PT if your insurance allows you time. I use as many hours as I can and it helps.
AnonymousOctober 17, 2011 at 5:31 pm
its been awhile since ive been on here. but after reading ur post it helped…. i had gbs in 2006 a VERY bad and uncommon form.. i have been left with many complications and side effects. I TOO have very bad pain in my legs, and sometimes other areas of my body… over the years have tryed other neuro meds but the only thing i have found to give any relief is oxycontin.. i to feel the pressure and the stigma that is associated with pain meds BUT have been reassure by my doctor that if it is helping and allowing me to have a sense of normalcy in my life, that i NEED to continue taking it! dont let what other people think or say bring u down… gbs is an emotionally exhausting disease! i hope u find a bit of strength is the words and support we all have for u here ! THING WILL GET BETTER
October 21, 2011 at 10:37 pm
Don’t worry about the stigma about the medications. If there is a short or long term need be it pain or depression and it helps you do it. Nothing to be ashamed of or worry about. Mentally and physically this is a long journey and many barriers along the way and if there are things available that will help you get from where you are to where you need to be there is no need for appologies. I am 1yr post GBS never had severe pain outside the initial onset but the mental aspect of this can shake you to the core. Depression and anxiety i think are very common and there are med’s that can help both. Think of where you will be one year from now and realize there will be brighter days.
I don’t like to give the “think of the positive” speach but GBS has put all of us in a shi$#$ place for a time. It will get better.
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