Severe Pain/New diagnosis
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June 6, 2006 at 1:24 am
Hi everybody….this website is just awesome.
My Fiance started his journey on 4/11/06 with Streptococcal Toxic Shock. We were in ICU for almost 2 weeks, and left the hospital on 5/19. He had more fluids than anyone could imagine throughout this time, plus IVIG therapy. He was in kidney failure…the whole 9 yards, so he was severely edemic, especially in his hands and feet. His feet were seriously 4 times there normal size. He complained that his feet were numb and felt funny, but we all figured that was due to the edema.
The Monday after discharge we were back in the ER. The left side of his face went slack-Bell’s Palsy we were told. We also talked to the ED Doc about how much trouble he was having walking, and that his feet and legs were really still very numb. The Doc said it was probably a diabetic neuropathy (which at the time I knew was wrong because my Fiance is newly diagnosed diabetic, and that kind of neuropathy takes years to develop), and the Doc said the words Guiallian Barre, but that it couldn’t be that because it was fast spreading (wrong again!). So we went home.
We had a follow up visit with his PCP the following Friday. He thought something just wasn’t right with the Bell’s Palsy and all, so he called the infectious disease Doc who had helped us in the hospital. He told the PCP to get him readmitted, because Bell’s Palsy just isn’t a usual after-effect of a bacterial infection. Well the PCP didn’t prioritize the admission with the hospital, and the hospital called and told me it would be 2 days to get a bed. I called the inf. disease doc myself to see if he was ok with that. Apparently the PCP hadn’t mentioned the feet problem, and as soon as I told him, he said get him the the ED as soon as I could. Trying to get my Fiance to the truck he fell, and we were sure he broke his leg. He is 6’8″ and almost 380 pounds at the time. There was no way I was getting him up so he went by ambulance.
So after a week in the hospital again, and numerous MRI’s, CAT’s, finally an LP and nerve conduction, we were told it was Guillain Barre and started plasmapheresis. We were lucky in that it only went to his thighs (slow moving), but he lost all feeling and movement from the knee down, and abnormal sensation in the thigh. He also had the numb/tingling in his hands. As the plasmapheresis started doing it’s job, he started getting more and more pain back. The pain came way before any sensory feelings came back.
After 5 plasmapheresis treatments we were sent to inpatient rehab, were there for almost 3 weeks, and now we are home. He is taking 3600mg of neurontin a day, plus elavil and cymbalta-an anti-depressant with off label use for neuropathic pain, and he still cries every night. The shooting pains make his whole body tremble. He says he could stand the burning in his feet, but not the shooting pains. We have been home a full week now, and it seems his walk with the walker is worse off than it was in the hospital, and he says it because it hurts so much. It’s a fight to get him up and moving. We were sent home in such a rush, and the outpatient rehab was really busy, so he only had one session last Friday, then he has 2 this week, then starts the 3 a week next week. I’m scared the pain maybe too much for him though. We both just feel so helpless.
Are there any other suggestions out there? Any meds, or home remedies anyone can recommend? We would appreciate any and all help/advice/encouragement!!Thank you!
Amy:eek: -
June 6, 2006 at 11:32 am
Hi Amy,
Welcome to the Forums.
I need to tell you that being your Fiance is Diabetic, he needs to have IVIG that is not sugar based or sucrose based. That might be the reason for the kidney failure. The Drs should have known this, but most Drs don’t. So in the future tell the Drs, no sugar or sucrose based IVIG for him. I didn’t know that either when my husband was first diagnosed. I learned alot in 6 years by being here.
I know the pain you are talking about hubby had the same for 6 years. It is dibilitating. The neurontin is a good start to control the pain along with the Elavil and Cymbalta. My husband had to go off Elavil as it seemed to make him worse. This is going to be a hit and miss trial of drugs until they get the correct.
You cannot push him into moving to much as it will create more pain. His nerve damage sounds exactly like my husbands, the pain would start in the feet and travel into his stomach along with the vibrations. We had to be so careful not to bump into him or his bed because it would start the pain off.
Yoou also cannot let the therapists push him beyond what his body is able to do. There also comes pure exhaustion from GBS and it will most likely stay with him for years. My husband could not have his feet or legs touched, no massages, no sheets, no blankets, no trousers. He only could wear shorts and he was diagnosed in the winter. His hands and arms trembled when ever he tried to use them, he also use to choke on his food. So be watchful when he’s eating. He couldn’t drink cold liquids either, caused choking and pain in his mouth.
My husband has passed away but I want you to know it wasn’t from GBS, so please don’t worry about that.
Stay away from home rememdies,homepathic meds, you don’t know what is in them and they could cause a boost in his immune system and he can’t have that. The immune system needs to be surpressed. You can give him daily multi vitamins.
No one knows in what time frame he will begin to heal, it could take months or it could take years. Around here GBS stands for:”Get Better Slowly”
Stay with us and I know the vets of GBS will answer you soon.
Bless You Both 🙂
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June 6, 2006 at 12:35 pm
Dear Amy,
My thoughts and prayers are with you. I too was diagnosed with Bells Paulsy initially and about a week later they finally diagnosed me with GBS.
As Brandy said, you cannot let the therapist push him beyond what his body is able to do. Sometimes unfortunately they do think that they know better, and its a horrible job, but you have to be his advocate and just push back. I was in physical therapy for almost 6 months after my hospital stay, but I was lucky as the pain at that stage had almost gone.
Keep coming back with questions as there is such a wealth of information on this site.
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June 6, 2006 at 8:39 pm
Dear Amy,
It sounds like you guys have been through the worst of it…I pray that’s the case!
I’ve had 106 plasma pheresis. I would have never believed I could make it through that many, but somehow I did. I tried I.V.I.G., but it didn’t work as well.
I also take Cellcept (not Imuran – it will make your hair fall out) and Norco for pain. Another doc has me on vitamin b12 shots to grow back my nerves and help with fatigue.
Rest will be the number one thing that helps your loved one. Also, no stress. Stress is a terrible setback for anyone with GBS/CIDP.
Exercise (lots of stretching, light weights, etc.) is also very helpful.
Keep checking the website out. All of us can relate and we’re here to help in anyway we can!
In closing, the best thing you can do, is be YOU. You will love him and make him feel special when he feels down.You will give him hope when there seems there is no hope left. You will listen when he needs to talk about his pain (both physically and mentally). You will help others understand his situation. Your thoughtfulness will never be forgotten.:p
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June 6, 2006 at 9:24 pm
Amy,
I just wanted to say welcome and please pass along my best to your fiance. If his pain is still that bad they can increase his Neurontin to up to 5400/mg a day I believe (Gene is that right??). Rehab will need to be taken slowly to avoid setback. Keep coming back here, we are here to help any way that we can. Take care.
Jerimy
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June 6, 2006 at 9:47 pm
Hi Amy and welcome. I know how frightened and alone you must feel at this point. I had to watch my fiance go through GBS last year; he actually proposed while he was still on the ventilator, so it was pretty special. I don’t think there’s a worse feeling in the world than watching someone you love and care about suffering like that. I’ll say a prayer that your sweetie’s situation improves, and that you continue to be strong for him. Just know that we’re here for you when you need us.
Best wishes,
Shannon
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June 6, 2006 at 11:20 pm
You had 106 plasma treatments? Is that a typo or is that the actual number you had? If so, in what amount of time did you have that many?
I am just shocked that anyone woul dhave that many.
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June 7, 2006 at 5:17 am
Amy so sorry about the rough time your fiancee is having. For his kidneys I hope you gets rid of any pottasium in his diet. Bananas, orange juice and anything else that potassium. His creatine levels shouldn’t be high if it is then he should stop any food with potassium.
Sue
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June 8, 2006 at 8:35 pm
Hi Amy-
I have to tell you that I was quickly diagnosed in the ER with GBS (even after a trip to the chiropractor who reported I had a slipped disk.) The symptoms came on quickly and the doctors immediately reccomended Plasmapherisis. After 5 or 6 rounds, I was feeling good and was sent home. (this is an abbreviated version of course to all the pain and suffering..the bed sores-the double vision, the foot pain…..)As soon as I got home-things started going downhill fast. The pain was getting more severe in my back and feet-and I had to start rocking back and forth to just control it. Percocets didn’t help-my physical therapy was torture…I finally begged my parents to bring me back to the hospital.
One doctor called it a relapse-and another said the virus wasn’t through running it’s course. I had to go through another 5 rounds of Plasmapherisis and was back in the ICU. Finally, 2 months later-the pain was starting to subside and I was on my way to recovery.
I’m not sure if this will help at all. Eveyone’s case is certainly different. But I definitely needed more rounds of treatment and needed to be back in the hospital-no doubt.
Good Luck!
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