Going to Mayo Clinic in less than a week!

[katydid]

Day 2 at mayo: I sat in a class for 8 hours today. The way that they describe fibro is your body is stuck in a constant fight or flight state. When your body is in that state all your senses are extra sensitive. It's the body's natural defense mechanism but it is only supposed to last a short time until the threat the started it is gone. They also said the more you think about the pain the more of this substance p is made in your body which causes more pain. Also when your body is in the fight or flight state blood flow is diverted from the brain because it is needed elsewhere for the fight or flight state. The muscles become tense in this state because they are prepared for extreme use, because our bodies are stuck in this state the brain and muscles are soaked in lactic acid which is responsible for sore muscles. I have more class tomorrow and my fingers are getting wore out from typing this on my phone.

Very interesting! Especially about the lactic acid, I know my rheumatologist has tested my lactic acid levels, but I've done research on fibro and something called 'lactate dehydrogenase deficiency' because my aunt has it and her Dr suspects that it runs in our family, and according to her Dr and the research I found, in order to to that blood test properly, you have to do some sort of exercise right before they draw the blood in order to see true results... The Dr's name is Dr. Julian Ambrus, he has a case report I found thru Google, a real medical study or whatever you want to call it called "Mitochondrial myopathy presenting as fibromyalgia" I highly recommend reading it if you are interested, it is a good read and very interesting....
He actually wants to see me but I haven't called to set up an appointment yet because I just can't stomach seeing another Dr right now to be honest.... Sad right? But I think he could be onto something... He's one of the top Dr's in his field in the region and is apparently known throughout the medical community... My rheumatologist and pain management Dr's actually encouraged me to go see him and they have said it's definitely a possibility.

But what I really want to know, is how in the world did you manage to sit through an 8 hour class?!?! Lol I'm sure you took breaks and they let you guys get up and stretch and such but darn 8 hours!?!? I'd be pooped! Lol

 

[Trellum]

Best of luck, link56! I truly hope you find the answers you are so much in need of! I really think the people at Mayo will be able to help you! Please try to relax and don't forget to tell the doctor all the symptoms you have. Try to think positive and relax! Hopefully they'll find out what's wrong and help you out with that! I totally understand how you feel when you say you just don't care anymore; you just want to find a solution to that pain and go on with your life. I feel the same!

Please keep us posted! Best of luck with this visit to Mayo!

 

[links56]

The 8 hour class was very tiring. We took breaks every hour and had a lunch break. I was still exhausted when it was over because all the information. I have copies of all the stuff they taught and I plan on posting them so that some of you guys and gals might be able to utilize them if you want. I will try to type a more detailed post when I can type, it's hard on the phone. I understand about not having the capacity to deal with another doctor, some stuff just sets me off and I just can't deal with it. I feel very hopeful about the future and the treatment changes. They have a high success rate here so the stuff has to work. I'll post more later.

 

[katydid]

Any news for us links56? I'm curious to hear how it's going over there! Oh and I posted a thread called 'found some new research about fibro I want to share!' and it's the info about lactic acid levels like you were talking about! Check it out and let me know what you think!

 

[Trellum]

The 8 hour class was very tiring. We took breaks every hour and had a lunch break. I was still exhausted when it was over because all the information. I have copies of all the stuff they taught and I plan on posting them so that some of you guys and gals might be able to utilize them if you want. I will try to type a more detailed post when I can type, it's hard on the phone. I understand about not having the capacity to deal with another doctor, some stuff just sets me off and I just can't deal with it. I feel very hopeful about the future and the treatment changes. They have a high success rate here so the stuff has to work. I'll post more later.

Glad to hear that! It seems you are learning so much during your visit. Have they made any suggestions regarding to your treatment? It would be so interesting to know what those folks have to say regarding to that. I hope they offer more answers than posing more questions!

 

[athena_]

Did you go to the Mayo in Florida? I made an appointment with the Mayo in AZ today but they told me that they 'don't treat fibro here." In fact they were so unhelpful that I ended up with an appointment with an internal medicine doc about 45 days from now and that's the earliest available appointment! Sorry, I'm frustrated and in pain. I'll post to the newbie site as I've been an occasional lurker here for a while but have not posted before.

 

[links56]

It was mayo in Rochester, mn. You don't need to apologize, I am in constant pain also. Every day they drag their feet is another day you have to be in pain. They actually have a dedicated area and doctors just for fibromyalgia.

 

[JKerner59]

Totally get your fears...in the same boat....everyone takes good health for granted until it goes south....I will keep you in my prayers for an awesome healing event to take place for you while being evaluated by the Mayo doctors..you carry the well wishes of the whole fibro community.. keep us posted about your progress as you can.

 

[links56]

Sorry I haven't been on much lately. I've been on gabapenten for a week now and it has been helping alot! I've been sleeping and feeling refreshed somewhat. I have alot more to post about my trip I just have been so busy. Hope to post more soon. Hope everyone is doing well.

 

[trayne91]

I just read through this post. This is all so interesting and I'm excited learn more about what you learned! Best of luck to you and I hope you are finding some relief that you are seeking.

 

[links56]

As soon as I have some free time I will post more info. I have been taking 300 mg of gabapenten at night and I have greatly improved. I actually feel rested when I wake up! And I actually sleep! I feel better than I have in a long time. I hope it lasts and I will post what I can to help others.

 

[athena_]

Links, when you have time I would love to hear about the rest of your weeklong visit to Mayo. Would you consider starting a new thread for your update? It would be easier to find I think. I'm glad to hear that you are feeling better.

I'm headed to the Mayo in Scottsdale, AZ in less than 3 weeks. I also take 300 mg of gabapentin (starting my 3rd week of that) and I personally haven't noticed any results at all. On the plus side it hasn't given me any bad side effects yet.

 

[Determined2014]

I believe they will be able to help you, mayo clinic is always determined to help patients and I have heard of many people getting their happy ending stories at the mayo clinic, I wish you well, be optmistic.

 

[Smartgirl]

As soon as I have some free time I will post more info. I have been taking 300 mg of gabapenten at night and I have greatly improved. I actually feel rested when I wake up! And I actually sleep! I feel better than I have in a long time. I hope it lasts and I will post what I can to help others.

Links-I am new to the forum but also went to Mayo and received help. Similar to you, I was prescribed gabapenten.....however after about 3 months I developed a horrible rash on my back and legs from it. The way the mayo dr explained it to me.....Gabapenten builds up in the system over time...and about 1 in 5 patients suffer an allergic reaction from it. Hopefully this won't happen to you but I wanted to give you the heads up just in case. I am currently taking different medications but honestly they don't quite bring as much relief as the Gabapenten did!

 

[links56]

Wow, I wasn't aware of that Possibility. Thanks for bringing it to my attention. What dosage were you on?

Athena, I will start a new thread. I am planning on scanning in all the pamphlets and papers they gave me while there also copies of the dvds. I tried to get as much info as i could for everyone while I was there.