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Thank you for this site, its been lonesome.

Started by gasman, September 20, 2017, 07:47:05 PM

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gasman

Hello all, I have been battling this illness for several years and find it to be lonesome and difficult to find anyone that understands what life with this illness is like.  I have searched for a local support group and there are none.  Apparently there have been groups within an hours drive, and they all shut down.  It would be wonderful to find others to share with and learn from.  I am blessed to have a physician that seems to understand and is supportive.  Like many on here, I was sent to the Mayo Clinic in Florida, received a diagnosis and was sent back to my physician.  I am now battling the long road to Social Security Disability and awaiting the long awaited hearing before a judge.  Any suggestions for this process would be greatly appreciated.  Thanks for listening, its great to find someone that understands.

denny

Your very welcome and we defiantly understand.
Thanks for being here. We'ed love to learn more about you.
Post as much as you like. :biggrin:
I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

Robby

 Welcome Beads

Like denny said it would be great to learn more about you, what meds you've tried, what other treatments you've tried, what worked and what didn't, and any other information you feel free to share, but that is all up to you and what your comfortable with.

As far as disability goes, give me a little while I just woke up, when I can feel a little better I'll try to make you a list based on my experience. That's it for now, and again welcome.
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I will put you in the trunk, and help people look for you, DON'T TEST ME.

gasman

Thank you for the welcome.  I appreciate the opportunity to talk with others that understand.  Wow, where to start...I had a much milder form of this disease rear its ugly head around 20 year ago.  It lasted about one year, and when treated for HPylori, the symptoms disappeared over a two week treatment!  No one could understand or explain that.  Well around four years ago, it returned with a vengeance. Needless to say, one of the first things we tried was the same treatment that was used when the symptoms disappeared 20 years ago (two strong antibiotics plus pepto-bismo, but no change this time.  I've seen chiropractors and acupuncturist herbalists, as well as every specialty physician available, and was sent to the Mayo Clinic.  My physician has tried everything medication know to man it seems.  Non steroidal anti-inflammatories were tried extensively with no benefit, muscle relaxants to help with sleep, pain medication when I have to, but the one drug that was really helpful was gabapentin.  One of my many Dx was trigeminal neuralgia and in addition to all the other painful sites, I had sever dental pain.  I saw multiple dentist, oral surgeons, and endodontist and no-one could explain the dental pain.  I finally saw a dentist at the dental school at the University of Kentucky that writes the books on facial and dental pain and he changed my life.  He is the one that put me on Gabapentin and that greatly reduced the oral/dental pain and helped some with the overall whole body pain.  This drug has been helpful with the overall pain and add in the pain medication and I can manage day to day.  Unfortunately I kept doing everything possible to stay in the work force, but eventually about two years ago, had to leave the job I loved to try to survive.  These medications unfortunately make me very sleepy after dosing, and I could no longer get the needed benefit by only taking the medications only at bedtime.  Surprisingly, I was lifelong in the very system that has now failed me, I was in the healthcare system.  Everyone I have encountered had truly tried to help me but the system is not educated on this disease to the point where we can get the help we need.  So, I have tried all the non-traditional treatments as well and no benefit was found for me.  Anyway, thanks for listening, and please let me know if anyone has found success with any treatments. 
Thank you


augoldminer

For me it was gabapentin and running two tens units and moving the pads around my body for years.
Wooden Ships and Rusty Crusty Old Iron Men
USS Enhance MSO437
Sanity is for Nuts!

gasman

Boy I agree, Gabapentin and the time off work to take it and not continue abusing myself and getting the pain to a point that nothing would help.  A TENS unit is very helpful sometimes, and in the cold weather months, I find heating pads very helpful (as in plural-multiple).  I don't know about you guys, but the Gabapentin has been helpful, but it knocks me onto my butt.  Usually a nap is required not too long after dosing my five doses a day. 

Robby

Quote from: gasman on September 22, 2017, 08:15:00 PM
after dosing my five doses a day. 

I only took it twice a day, but it was helpful for a couple of years, then it stopped working. Now I'm on Lyrica and so far it's doing it's job. But I imagine I'll have to swap back before long.  I've tried too many things to list at one sitting. things will work for a time (sometimes a short time sometimes a long time) but then it quits. I can swap out until the new thing quits and then go back to the old thing and it will work again.

The drowsiness should fade away after you've been on it long enough, your body just has to get accustomed to it. The dental pain is weird, but totally understandable, with fibro anything is possible. Glad to hear your starting to do better, let's hope the trend continues.
/>----------
I will put you in the trunk, and help people look for you, DON'T TEST ME.

denny

Success... :lmao:

Seriously,I've had some of that here and there.
But not a lot.
I take morphine,gaba and prozac.
Provigil for energy,that works sometimes.
Trazadone for sleep,that works well.
Enzymes for nerve pain. That one may be working.
I need to find the name and get back to you.
I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

foxgrove

Welcome to the family gasman, :welcomeani:

Sorry for my late arrival at the party.  Insane amounts of pain and mind blowing exhaustion... you understand.  In any case, sad that you had to find a place like this but I'm very glad you did.  We're not the happenist place around but the folks here truly understand.  There are a lot more people reading but unable to post at any one time than you'd think.  Amazing folks all with stories that you'd understand.  That isn't the first time I've come across the dental pain thing either.  So glad the gaba is helping... that one is excruciating!

So sad that the health system you devoted your life to failed you when you needed it.  It's done that for so many of us.  Doctors just don't know what to do with us so, sadly, there's a lot of minimizing of our symptoms and rolling of their eyes.  Even for those of us who find a doctor willing to listen, they really don't have the confidence of what to do as there is no set and easy road to recovery... or even to stability.  Hang in there, though.  Things continue to change and new and different ideas pop up all the time. 

Glad gaba is giving you a good result.  I see it's taking more and more to get the job done but that seems to be the way most of the time.  If you can find a second one that works, Robby's suggestion is fabulous to bounce between the two without building up a heavy resistance.  I'm very big into heating pads and massages which help get through the day.  I still use my TENS though less due to the pain of trying to set it up on my back.  Gotta get one of those TENS jackets I guess.

In any case, good to meet you and welcome to the family.  Just sit back and relax... it's a good place to be.

Fox
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

denny

Are those massages expensive Fox?
Would be here.
I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

foxgrove

I'll bet they would be, if it weren't my wife doing the massaging.  We've worked for a number of years to get the right effect in the right spots though I have to admit, she's so blown out run down this fall, I'm amazed that she hasn't ended up in the hospital for exhaustion.  Just too much working, really bad sleep, and a self motivating drive that has it's accelerator stuck firmly to the floor.  Lord I love her to bits but I wish I could do something that wouldn't get her ticked off at me. {sigh}

Regular massages at a therapy shop cost about $80 and up per hour.  Not going to doing a whole lot of that (any of that) in the next while!
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

denny

You do have a saint on your hands.
I pray she don't use herself all up.

My wife won't do it with a capital W.!
Somewhere along the line she became scared shirtless she will take on the role of my mother. She's really pretty extreme sometimes.
Today she told me we needed time apart,this at a time I'm near my breaking point.
Sorry gasman,wrong place. : :( :
I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

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