Pain, Pain, Pain, My Whole Body Hurts Like Hell
AnonymousApril 18, 2008 at 6:23 pm
I had GBS when I was 5 and even my parents don’t remember me hurting this bad before. Does each time you have GBS make your body hurt worse? Is it just the nerves coming back? Have you who have had GBS more than once experienced more pain with the second time? Is it the IVIG?
AnonymousApril 18, 2008 at 7:56 pm
Kinney if you feel you are getting worse get a EMG test to check the nerves to see if they are getting worse. Maybe if you have develop CIDP a Spinal Tap might show elevated proteins. Mine didn’t though but I still have CIDP.
You will want to see a Neurologist who will examine you and do a full work up on you.
April 18, 2008 at 9:44 pm
Gbs can develop into cidp. however, before you decide that it is cidp, you should talk to the doc about post gbs symptoms that are compared to post polio symptoms. Many on the site w/ gbs suffer years later.
There are some concrete ways to decide if it is cidp. Some do a nerve biopsy to see if there are a series of demylienation events. This procedure has mixed results from people on the site as to whether the answer is worth the permanent pain. They take a piece of nerve out and examine it under a micro. and if there is a layer appearance, each layer represents a new flare. Then there is a ncv/emg. I personally think that is would be inconclusive for you because you have had gbs. So there could be permanent damage that exists from the initial attack. Not everyone gets reflexes back or velocities increased (the numbers that show the speeds of the nerves) after they have had gbs. The only way that I think it could positiveley be accurate is if you had a previous test to compare it to. That test would have to be available for the neuro to duplicate. If you have a baseline comparison and the results are worse, then yes it would be accurate in dx new demylienation, therefore cidp. Then there is the l/p, but not everyone has an elevated protein level and still has cidp or gbs.
Finally, you mentioned ivig. Are you currently getting ivig? If you are, and it helps, I would say it is cidp. Ivig would not help a person with gbs continually. The only way ivig would help gbs is if you had recurring gbs and it halted a new attack. Frankly, if the reccurrence is often, I really don’t understand what the difference would be between cidp and reccurring gbs.
Is there a constant decline in your weakness or constant increase in pain, does it come in cycles? If you are getting ivig, how often?
Kevin was initially dx w/gbs and graduated to cidp. We now get ivig once a month over a 4 day period for 6 hours and 40 minutes.
Dawn Kevies mom
AnonymousApril 19, 2008 at 4:22 am
how much neurontin are you taking? a 2nd case of gbs can be worse or easier on you. sounds like you are on ivig. be sure to getr that neurontin. 2000 mg/day is a good starting point. you can always scale back if you need to. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 19, 2008 at 2:22 pm
SPENT HOURS ANSWERING AND LOST IT!
I will try and remember what I said.
Some are diagnosed with GBS initially and it turns out to be CIDP, [B]However GBS cannot turn into CIDP[/B], it is simply incorrectly diagnosed initially as the symptoms seem to come on acutely.
It is important to realize that residuals from GBS can be confusing. Pain after the damage being done is different from pain during the attack (same for CIDP). there are difference in their names, the way it feels as well as what pain medication to use – pain AFTER the attack is called neuropathy pain. The acute phase pain is called nociceptive pain. Residual symptoms include pain, fatigue, weakness at times, and of course as far as i am concerned depression. GENERALLY, (please note i say generally as in some CIDP cases this is not the case) CIDP weakenss occurs proximally and distally, BUT the numbness and tingling is confined to the distal limbs and normally doesnt go higher than the elbows and the knees – so think back to the initial attack. There are so many other “usually in CIDP” factors which i sort of touched on before everything was deleted, my hands are too tired to write them down and Im not sure they will make things clearer.
You mentioned that you had GBS at 5, I had it at 18/19, 22 years ago. in the past 5 years things have been very difficult with regards to pain, fatigue, weakness at times and depression. The ‘official’ term of POST GBS is that MANY years or decades after the initial attack, the nerves that were damaged are now causing problems (probably because the body was so much younger then and able to compensate to a degree). I have weeks at a time being affected, sometimes spend a great deal of time in bed (which depresses me). If i werent taking the Cymbalta and Provigil I think my good days and sometimes weeks wouldnt be so ‘good’. I am sure you have read us speaking about the likeness of Post GBS to Post Polio.
I know I said more in the answer I lost, but I hope that explains it to some degree. Still difficult to understand!:(
AnonymousApril 27, 2008 at 9:36 pm
I feel for you. I just got out of the hospital April 6, ’08 with my 2nd occurance-a little over one year after the 1st.
My first time, the pain was horrible from the waist down, and it lasted about 6-8 weeks.
This time , the pain is really bad in my left leg and right arm. It’s pretty constant in the leg, really bad in my foot, and comes and goes in my arm.
The severity of the pain was as bad last time as it is this.
As far as GBS vs. CIDP. My Neurologist told me that if if this ever happens again, he’ll do nerve biopsies and diagnose. Don’t spend your time worrying about it. Just focus on keeping as positive an attitude as you can, pray a lot, and hang in there because there’s a good chance that this pain is temporary and will subside. Lyrica works better than anything else for me.
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