[QUOTE=Nico]I play guitar and cajun accordion, been doing this full time last four years. It’s my passion but I don’t know how longer I’ll be able to do it with this chronic pain.[/QUOTE]

Sweet! What kind of music do you play? Accordion eh? My wife has turned me on to Arcade Fire who use thm nicely.

I like to RAWK!

AND no matter what please believe that you will play again.

I know that you and I are different in our sickness, but if it helps I will tell you that eight weeks ago I could barely pick up my guitars (the Les Paul almost pulled me over!). When I playe the strings felt like hot knife blades.

Today i practised major and pentatonic scales for about 5 minutes (and played a wicked djembe along with The Police).

Have you received any treatment yet? I don’t know anything about how you got sick. If you feel up to it i would like to know more.

Best

[QUOTE]Hi, tried Lyrca way back and didn’t help but I know it’s help a lot of people with fibro. Thanks for the pool tip! I see your a musician…same here![/QUOTE]

whoa,whoa,whoa! I never claimed to be a musician!;) 😉 😉

I’ve always had to work at being entertaining to make up for the lack of talent 🙂

I do miss my moments of sweet dissonance! What do you play?

Hi Nico

Welcome to the forum.

I have started taking Lyrica and have noticed a dulling of the nerve pain in my hands and lower torso. Only potential downside is the possible side effects and if you have no coverage it is very expensive (I’ve heard Cdn.$300 for a bottle)

I have also found that being in a pool and the hottub takes away a lot of pain. Joining a pool is one of the best things I have done in recovery.

I hope this or other posts help. Keep rocking!

kEEP ROCKING!

Hi Christine and welcome!

So good to hear that your symptoms did not progress and your hospital stay was relatively short.

Sorry to hear that you feel you are regressing. Please be patient and know that it is unlikely that it will return.

As for your symptoms returning, all I can say is that I too feel like things are worse at times, especially in the eveninmg when I get tired. I think that it is expected when one is tired so I try to gauge how I am feeling in the mornings or at physio. Allow the positive comments that you and others make about your progress to sink in. If you arelike me that may be difficult at times, but please stay positive.

Short and simple, some nurses are wonderful and some suck.

Now for the long version.

My stay at the hospital in Newmarket, Ontario showed me both the best and worst in health care. When my GP sent me to emerg. on a Friday after suspecting GBS I thought that I was going to be treated. The bonehead that attended to me after an 8hour wait confirmed that I had GBS, and then sent me home. He told me that if my breathing worsened that i should come back. He also left me with a phone number for the medicine clinic to call for treatment. I called Mon.and Tues, left 15 messages and no one returned my calls. By this pont I was crawling and couldn’t walk.

Being back at home with a diagnosis was truly frightening. After googling GBS i discovered all the horror stories about being ‘locked in’ and wondered if this was what the emerg doc meant about my breathing. As well, family and friends also googled and began calling me with frightning concern (I wasn’t ready for things like being the topic of prayers, it was too much all at once).

My mother who is a retired nurse caught wind of all this and got involved ‘and hell came with her’. After verbally beating up anybody she could get on the phone, I was given an immediate appointment to the medicine clinic. The first doctor who saw me acted incredulous whenI told him that emerg sent me home. I was admitted right away and began all the tests and finally IVIG.

At first I was in an ICU ward in a room with men recovering from triple-bypass surgery. The care I received was mostly incredible as far as the nurses were concerned. They wee attentive and helped me get throuigh a lot of fear, especially as I had my MRI (I’m extremely claustrophobic), the spinal tap (and the accompanying headaches and nausea) AND OF COURSE, GBS!!

Then after IVIG i was moved to a stroke recovery room for in-patient physio. This is where the horror show began. my roomies included a man directly accross from me who I learned was there to die. and two other elderly stroke patients. Both of these poor men had dementia, but one was very afraid and was awake all night crying out, pullinng his IV and catheter out and more. Because he was nearly deaf, the nurses felt the need to yell to communicate with him. I don’t want to reisit the moment they decided to re-catheterize him-without any lube. His cries still haunt me.
On top of this, housekeeping ‘forgot’ to clean our bathroom for a day. This was distressing as the men in the room were all in diapers, which when soiled were disposed of in an open garbage bag on a stand. For over 18 hours the bag sat there over the top full with dirty diapers, soiled dookie-wipes, used catheter bags and more. The toilet had feces, urine and blood on it and the nurses would not clean it, claiming that it was not part of their duties and that it was too dangerous for them to tackle. I begged repeatedly to have the washroom cleaneed up. They told me that there was no one to clean it, but I was free to use the visitors washjroom in the hallway, about 150 meters from my bed. Though i could walk, I was stoned on a combination of gravol, painkillers and sleeping pills. I am grateful that I didn’t fall. I felt that I was in a third-world hopital.
The next morning after not sleeping, I called housekeeping myself and they cleaned up the washroom, repeatedly apologizing. I was given a weekend pass and went home after they told me that I would be in a different room (I have semi-private coverage, which is irrevalent whenthere are no beds available). When I returned I was in the same room with the same men and the garbage/toilet situation was started. The man with dementia was more frigtened than ever and the nightmare continued.
Long story short, I went insane. I tried to politely complain, but was answered with contempt and ridicule. It became a war. When a nurse came in to give me a heparin injection I fully snapped. This was administered to me as a prep for IVIG and I adn’t had this needle in the stomach for over ten days. I loudly and i admit rudely objected and she threatened to get a doctor (i said great, call your mother and big brother too!) and write me up as going AMA-against mediical advice. That never happened as she realized she messed up.
The wholw ordeal ended the next day when I orderded them to discharge me. Again I was told that I was AMA and I think my response was (regretablly) ‘go f*** yourselves, I’ll call myself a cab!’. The head nurse came in trying to calm me down, but sent me into a rage when she started to defend her staff’s actions. I brought her to the stinking bathoom and asked her if she wanted to use our toilet or brush her teeth over the filthy garbage can. She answered that these were typical hospital rooms. I thn suggested that the garbge be stored in the staff washroom or lunchroom She thought that was an unfair commet. Then she pleaded wth me to stay. i responded that I would throw myself off the roof before I stayed in her care any longer.
By 5PM I was properly discharged and went home. The thought of the men I left behind in the room angered me to an extreme (I factor into this my pain, fatigue and lack of sleep). i spent the next day harrassing as many higher ups as I could in the hospital. I threatened that I had photos of the washroom and contacts at the Globe and Mail. This was a huge bluff because I had neither, however when you are going insane I guess that you can lie about things.

The good news is that I was being closely listened to. As a result, the hospital has changed their policy and practice regarding toxic waste disposal and ordered training for all staff on this matter. I insisted that I see that in writing and was pleased when I got a lengthy letter indicating that the changes were in place.

I went to visit my roomies a couple days later. Sadly, I missed James, the terminally ill man who went to see his maker. The other man with the frightening dementa was also gone. Ron was still there and said that the room was much better since I was dischaged. He was so grateful to see me and I left him some clother and fresh fruit. The room looked cleaner than ever and I was pleased. Walking past the nurses station was fun as everybody stopped and glared watchig my shuffle by on my walker. This was a small victory but felt huge at the time.