First and foremost, I’m not a doctor so don’t take this (or anything else I write) as medical advice. I am however a GBS fighter. At this point I am almost two years out from my initial diagnosis and boy have I learned a lot. So I’d like to take a moment to enlighten newly diagnosed GBS fighters and their supporters about the ridiculously crazy, painful, heartbreaking, and frustrating ride that’s beginning for them.
Everyone’s GBS fight is different but if you had any soft spots before you were hit with GBS, those parts of your body will be ravaged. Everything is up for grabs except your brain and your spinal cord. But that doesn’t mean you’re off the hook for back pain.
Things you should be mindful of:
- Keep track of your bowel movements before constipation becomes a real problem.
- Onset is usually 2-4 weeks. This means that GBS will be attacking your body for 2-4 weeks. The quicker you are diagnosed and treated, the MUCH better. There is no cure but treatment can stop or at least slow the ravaging.
- The most popular treatment is 5 bottles of IVIG. 1 bottle every day for 5 days. It might make you nauseous so don’t be afraid to ask for medicine to help with the nausea. They should also give you benadryl before the IVIG to limit any allergic reaction.
- Notice your breathing and try to monitor it so you can tell the doctor if it’s getting harder to breath.
- Toradol and Tramadol are two pain medications that won’t effect your breathing. GBS can be incredibly painful and opioids are not recommended because they can slow your breathing.
- You and your support folks MUST advocate for your best care. If you’re in pain, see swelling or redness, notice any differences, etc. make sure you tell your nurse and ask your nurse to get your doctor so you can tell them. This may be their job, but this is YOUR LIFE.
Some people are quickly diagnosed and treated and for whatever reasons they don’t get too bad and so recovery is easier. Some people are paralyzed from head to toe and end up on life support for months. The quicker you are diagnosed and treated, the better but that still doesn’t guarantee that you’re out of the woods.
I don’t want you to be discouraged, but I do want you to know what you’re up against. There are a few wonderful GBS support groups on Facebook and I rarely ever see anyone that says they are completely back to normal without any problems. BUT if you fight hard, work at it, and give your body what it needs, then you can come out of this thing ok. The recovery road is incredibly long (depending on how badly you were effected) but it’s doable.
It’s easy to get down and frustrated but that’s not going to help anything or anyone. Do your PT/OT even if that just means stretching and letting someone give you a bath or shower. When I was in the hospital there were some days that all I could do was get a shower and that was it, but it was something.
GBS is like a tornado that hits your body with little to no warning and then it takes years to rebuild everything.