Setback

Tim-

You are overdoing things. Your body feels the way it does because it is going to force you to rest now. Whats happening to you happened to me twice, once in June, and a bad flare in august. (I had moderate GBS in february). I know how frustrating it is. I have just returned to my job this month full time, 11 months after onset. I could only work p/t up to this point, and it wasnt easy. Give your body a good week with just rest, and see how you feel.

hi tim,

if you think this setback is due to over exertion, then it is your residuals acting up. the only ‘cure’ is tons & tons of rest. if it is another gbs attack or an ongoing attack [chronic gbs which is called cidp], then an emg/ncv compared to a previous one would show this & the correct thing to do is more ivig. as cara says, it is more than likely your residuals. take care. be well.

gene gbs 8-99
in numbers there is strength

Gene and Cara tell you true ~ rest, rest and more rest! We get so anxious to “get back into life” that we forget that our body is in healing mode and needs all the support it can get. I would offer, also, to pay attention to good nutrition as another means of support.

Tim, don’t lose your positive attitude, you need alot of rest right now, and you should be fine. you might want to cut back on your pt until you can control the pain and fatigue levels, otherwise you will have a longer fight on your hands. getting to know your limits is the hardest thing you have to learn, but it is important to get to know them. rest and more rest is best for the residual bounce back to end. keep up your great positive attitude and you’ll be up and motivating again shortly. take care.

Tim,

So sorry to hear about such a disappointing setback! I can only imagine how you must be feeling right now.

I agree with the others that unfortunately the only thing to do is rest up. And really talk to your PT about what happened this time. Not all PTs are used to GBS and so don’t all understand that they can’t push us like the rest of their clients without real danger to our health.

I understand about wanting to get back to work. But let me tell you, I had a very severe case of GBS (three and a half months in hospital, ventilator, the whole shebang) and after months of PT I eagerly jumped back into full-time school on a huge campus and full-time social life and worked at the school paper. I managed it but only because I was still in deep shock about everything. Ended up severely depressed after it slowly dawned on me that what I wanted to do and what I could do were two different things entirely. So sometimes our desire to get back to our lives can be very harmful to both our bodies and psyches.

I tell everyone (and I mean EVERYONE) that it’s integral to find someone to talk to. If not a therapist than someone who you trust to listen and be insightful. We were all so busy trying to survive in the hospital, most of us didn’t get to register the depth to which this illness is frightening. Between that and trying to adjust to a new life where we cautiously try to find our limits, it can be very emotionally difficult. I think talking to someone (and of course all of us here on this board) could be very important to your recovery, too.

Take care and keep us posted on how the IVIG goes. (PS, the legs might be acting up because of severe weather. Most people on here complain of nerve problems being acute during sudden weather changes or cold/wet weather.)

Tim,

We relate to your frustration. That is almost worse than the pain itself. That is where this forum is priceless. We understand. This is a rather isolating illness as people can look at us and think we are fine. I think you have the medical part of your current situation taken care of (providing you rest, rest and rest some more), but you need the psychological part to be taken care of also. Friends and family are well meaning, but they just don’t understand… therapists are good, but we are the best 😀

Just keep venting away – every day, we will listen and talk with you. I’m looking at 10 years next month (eeks – that’s Feb. 9th – almost here) and even though I now know when to rest and make up whatever excuse I have to for work, I still get very frustrated and a little depressed. Now maybe you understand why people like me hang around this forum (not that you didn’t).

Hang in there!

Hi Tim – Hang in there! It is extremely frustrating when your mind thinks you can do everything you used to do – but your body has other ideas!! Everyone is right – we all have limitations and we need to listen to our bodies as to when we need to rest. That isn’t always easy, but I am trying to pace myself and still have a “normal” life. Go with the IVIG, you will be amazed at the difference that wonderful stuff can make. I have also learned when I am becoming symptomatic and I am on the phone to my neuro pronto! I don’t want to get so bad that it means another hospital stay. I am doing pt at home and limit myself when I start getting tired. “Make it burn” doesn’t work well for me! This forum is absolutely the best place to get questions answered and feel comfortable enough to vent! Good health and good luck!

Hi Tim / DeeDee,

I saw in your posts mention of a repeat of the IViG treatment.

I don’t have GBS but my brother does. When he was first diagnosed, they did five days — five hr each day — of this IVIG treatment.

Is what you’re describing the same type of treatment? And how do they determine if this is what’s needed — is it because of a setback? — or are they measuring the antibodies and there was an increase in the number of antibodies?

Many thanks…
Jann

Tim don’t stress out of this and I know how hard that advice is to hear. Keep a journal of stuff you do and set a routine. You then can see what you did and how it effected your body a day or two later. That will help you pace yourself and alert your therapist to design a program for you. It will teach you just how strong or fragile your body is. If I did an exercise wrong or did it for too long I payed for it. Informed them of what occured and we went from there. I did not take a prescription but did use Motrin to take control of the discomfort. The next visit they would use ice or heat and massage in that area to relieve the pain. That brought me thru some very tough times. Do they so any kind of warm up exercises and cool down exercises. Those are also important to keep from getting sore. Also exercies in a heated pool reduced the amount of soreness I got. They even used ultrasound to help with different problems I had in areas. They manually manipulated my body to just stretch and move mucles that lacked memory to get them moving. Remember your muscles are receiving terrible messages from the brain and they are trying to translate them to repeat those movements. They are working overtime trying to get moving. Your nerves are wasting so much sending messages to the muscles that only get scrambled before they get there. Pace yourself, listen to your body and communicate with your therapist! I have been in rehab for 13 months working on getting better slowly. Good days I work against gravity and on other days I just work out in the pool. I think we all have bad and good days and vent about them here! Remember your brain can be your worst enemy. It is always thinking about how you were….it took me many months to have dreams that encluded the fact that I had GBS. Tiny steps forward slide back a few is what we all have been thru. Take care of yourself and visit here often….keep a possitive outlook and learn from these setbacks and accept the residuals….they will soon get less and less. Look at all these events as possitive measures that you are getting better and will have to fight your brain so you don’t over do it too often. You have just lost one battle not the war!

tim,

if i learned anything from the pain management clinic i went to was to stay ahead of the pain. do not hesitate to take the pills if you hurt. took me over a year to learn this. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Tim,

I’m wondering if your neurologist treats all his GBS patients with the once a month IVIG treatment for a year — ??? — I think it’s the best way to learn is to compare notes with how each doctor approaches / handles their therapy.

I hope you get to go to your appointment — the ice storms are no fun. I live in Texas so I’m pretty familiar with what the ice storms do can do — we don’t get them often, but when we do – ugh.

I do hope you get to feeling better — and keep us posted on your progress / treatments etc.

Best wishes…
Jann

tim,

can’t remember, are you taking neurontin for your pain. all else aside there is little chance of ivig damaging you if you do not need it, but nothing comes w/o some risk… take care. be well.

gene gbs 8-99
in numbers there is strength

Janz,

IVIg or Plasmaph. is only given to GBS patients during the GBS ‘attack’, which doesnt usually last more than 4 weeks. Giving either after that supposedly doesnt do any good because ….. the IVIg and Plasmaph. is given to try and stop any attack on the myelin sheath or nerves, and to help speed recovery to a point. A setback however is not the same as the onset of another GBS ‘attack’.

Below is a section from an article from the Communicator called …. “Whats in a name, Important Differences between GBS,CIDP and Related Disorders”

[FONT=Arial][quote]
[FONT=Arial]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.

[SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms). [/SIZE][/FONT]
[/quote][/FONT]

Janz

I’m sorry if I confused you ..:o I was answering your post from yesterday when you asked how it was determined what was needed. I realize you probably have seen the article, or know the info, just thought it would help.

Tim,

I am so glad you’re feeling so good!

Thray – so glad to hear you are feeling better. IVIG is TRULY “miracle juice”! I just had another three days of outpatient IVIG and am feeling pretty confident that it will extend my “remission”. I tried to get my neuro to go for the 1-2 treatments every 5 weeks, but she wanted me to have 3. Hopefully, I can get down to only 1 per month. It sure would help the bank account! I do notice that it takes me about a day to feel better. I sometimes get horrendous headaches after treatment and feel achy all over. You mentioned you were in a lot of pain and that an ice storm was coming. I find that any change in the weather (especially storms) really causes pain. It is the barometric pressure – much like a broken bone hurts or arthritis flares up when this occurs. Living in Florida, I better get used to it! Hope the IVIG on a monthly basis works for you. Keep us informed. Good luck and good health!

tim,

sounds like you have recurring gbs or chronic gbs [cidp]. take care. be well.

gene gbs 8-99
in numbers there is strength

Tim,
So glad to hear you’re well after IVIG! Take it slow and stay positive.

Hi Tim / DeeDee,

Does your insurance pay for the additional IVIG treatments? My brother said that his initial five day treatment was $37,000 dollars. So is one treatment $7,500 dollars? — wow!

Jann

Jann,

Dont mean to butt in here, but I guess Im going to ..:o I think you will find that $7,500 is relatively ‘reasonable’ for IVIg, I’ve heard it going more than double that for one treatment.

Tim, I’m so glad to hear you are feeling better after your treatment. Take care.:)