Old 09-10-2016, 04:52 PM #1
carljr17's Avatar
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 6
carljr17 is on a distinguished road
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
carljr17's Avatar
Join Date: 2016
City: clinton township
State: michigan
Country: US
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
carljr17 is on a distinguished road
Default Fibromyalgia for 26 years?

Hi all, I'm new to the group and wanted to introduce myself. I have such a long history I don't even know where to start, but I'll try to be brief and not ramble too much.

I was finally officially diagnosed with fibromyalgia this year, but I have been enduring the symptoms since I was 17 and it would be an understatement to say that it has ruined my life. I used to be quite talented with computers and at a time when very few people have those skills; I could have been really successful.

Of course, I've been through the medical system so many times and have had every conceivable test (EMG, MRI, PET, SPECT, etc. etc.). I do not appear to have a neurological condition, although my symptoms do seem to suggest that I do. Not only do I have constant pain in my hands and arms (and now my neck, back, and just about everywhere else) but I also feel electric shocks and tingling, mainly in the wrist area or fat pad area of the forearms, although I can get them in other places at times. I can even feel the shocks in my brain especially when I hear sudden noises that surprised me, like the creaking of the door. I cannot at all explain this.

I also suffer from chronic neck pain which prevents me from sitting at a desk. I lay in bed all day, and use my computer with voice recognition (woefully inadequate for most tasks).

Like many of you I also have IBS and can rarely digest anything without severe discomfort. A couple of years ago I was a walking skeleton and almost died. Of course I have had every possible G.I. test and was even tested for SIBO this year (hydrogen breath test) and tested for celiac disease twice. I have tried altering my diet drastically, including surviving on nothing but chicken soup for a year, eating nutrient dense foods, raw milk, of course organic, vitamins, minerals, herbal supplements, and everything else with no real effect.

Insomnia has also been a big problem for at least the last 10 years. I take Ambien which does technically get me to sleep, but the sleep does not feel deep or effective. I do lots of exercise including jogging, swimming, and light weights . I feel plenty tired but never sleepy.

Working is out of the question as I can barely use my hands for anything, cannot use a computer, tablet, phone, etc. I cannot even really cook or do almost any housework either. I've been so long in this condition that I've hardly logged any work credits and cannot even collect Social Security so I'm in a bad way financially, but that's really the least of my concerns.

It's really depressing and frustrating to have to wake up every day and be in constant pain, to be unable to work or contribute in any meaningful way, to try and do and eat the right things but never experience any relief And to never get any answers or feel any sense of going forward. I know there are many others who can relate to this.

My doctor has me on the usual medications for fibromyalgia
Lyrica, Cymbalta. I took gabapentin for many years as well with no effect. The Lyrica can sometimes give me some relief, but only if I take double the dosage that my doctor prescribes, and I end up running out and not being able to refill.

I'm going to research medical marijuana but my understanding is that isn't covered by any insurance and I don't see how I'm going to be able to afford it.

Anyway, thanks for listening.

Carl
carljr17 is offline  
Old 09-10-2016, 07:19 PM #2
EverEvolving's Avatar
EverEvolving EverEvolving is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 8
EverEvolving is on a distinguished road
EverEvolving EverEvolving is offline
New Member (Say Hi)
Registered Member
EverEvolving's Avatar
Join Date: 2016
City: Carteret
State: New Jersey
Country: US
Diagnosed: 07/2016
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 8
EverEvolving is on a distinguished road
Default Re: Fibromyalgia for 26 years?

Hi Carl, I'm sorry to hear about your pain. I'm new here too and unfortunately haven't gotten any responses to my posts, and I won't let you feel the same!
Have you ever smoked pot before? Do you think it will bring you relief? I wonder myself sometimes, but the last time I smoked I got wicked anxiety and that's what stops me. But I've been considering it more now that my kids are getting older and there's less guess work involved in the parenting lol
EverEvolving is offline  
Old 09-10-2016, 07:40 PM #3
EverEvolving's Avatar
EverEvolving EverEvolving is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 8
EverEvolving is on a distinguished road
EverEvolving EverEvolving is offline
New Member (Say Hi)
Registered Member
EverEvolving's Avatar
Join Date: 2016
City: Carteret
State: New Jersey
Country: US
Diagnosed: 07/2016
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 8
EverEvolving is on a distinguished road
Default Re: Fibromyalgia for 26 years?

Hi Carl, I'm sorry to hear about your pain. I'm new here too and unfortunately haven't gotten any responses to my posts, and I won't let you feel the same!
Have you ever smoked pot before? Do you think it will bring you relief? I wonder myself sometimes, but the last time I smoked I got wicked anxiety and that's what stops me. But I've been considering it more now that my kids are getting older and there's less guess work involved in the parenting lol
EverEvolving is offline  
Old 09-12-2016, 04:05 PM #4
carljr17's Avatar
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 6
carljr17 is on a distinguished road
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
carljr17's Avatar
Join Date: 2016
City: clinton township
State: michigan
Country: US
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
carljr17 is on a distinguished road
Default Re: Fibromyalgia for 26 years?

Thanks for replying! No, I have never smoked pot and I don't know if it will help, but I am investigating as I am left with no other options and the pain is unbearable.

A book people might want to look into called Performance without Pain may actually be helpful to some people here. It's about eating a nutrient dense diet and cutting out all the processed foods to improve your health. The book also says that muscle repair is low priority for the body, and if you have other things wrong than symptoms can easily be felt their first.

Thanks, Carl
carljr17 is offline  
Old 09-13-2016, 02:38 PM #5
diamond diamond is offline
Very Helpful Member
Registered Member
 
Join Date: 2015
Posts: 1,536
diamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of light
diamond diamond is offline
Very Helpful Member
Registered Member
Join Date: 2015
City: somewhere
State: anywhere
Country: UK
Diagnosed: 01/2008
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 1,536
diamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of light
Default Re: Fibromyalgia for 26 years?

I read your post and picked up you do weights jogging and swimming...yet say you lay in bed all day.

I hear you are suffering but theses two statements are a bit contradictory as lifting weights is way harder than light house work and joggling harder than going for a nice gentle stroll.

I hope you don't mind me asking why being up rather than in bed and sitting reading or pottering around the house is harder than the exercises you mention.

I don't doubt the pain your in just wondering if spending time doing what you can might improve your quality of life...and stop you feeling so hopeless.
diamond is offline  
Old 09-19-2016, 09:20 AM #6
carljr17's Avatar
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
 
Join Date: 2016
Posts: 6
carljr17 is on a distinguished road
carljr17 carljr17 is offline
New Member (Say Hi)
Registered Member
carljr17's Avatar
Join Date: 2016
City: clinton township
State: michigan
Country: US
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
carljr17 is on a distinguished road
Default Re: Fibromyalgia for 26 years?

The pain is not just dependent on how intensively physical the action is, but rather it is more action-specific. For example, scrubbing is just impossible with my hands (I'll be feeling it for many weeks to come), but lifting a dumbbell 15 times, although uncomfortable, will not leave any appreciable sensations of pain.

So yes, although painful to a degree, I do force myself to do exercise because I believe it has some amount of benefit. It also is recommended by my doctor for fibromyalgia. Simply laying in bed indefinitely with no exercise will not make the pain go away, or indeed make it any less, so I would choose exercise over complete bed rest.
carljr17 is offline  
Old 09-19-2016, 11:14 AM #7
diamond diamond is offline
Very Helpful Member
Registered Member
 
Join Date: 2015
Posts: 1,536
diamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of light
diamond diamond is offline
Very Helpful Member
Registered Member
Join Date: 2015
City: somewhere
State: anywhere
Country: UK
Diagnosed: 01/2008
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 1,536
diamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of lightdiamond is a glorious beacon of light
Default Re: Fibromyalgia for 26 years?

Hi Carljr17...thats quite unusual that you can lift weights without any appreciable sensation of pain in your hands or arms shoulders etc with fibro.

For me i could not lift a garden pot without pain for weeks but like you also the repetitive movement of scrubbing typing causes me severe pain that almost never reduces and has left me with permanent stiffness and pain from persevering.

Yes of course exercise is important if you are able....so definitely keep that up. I must have misunderstood the laying in bed all day..sorry for that.

As far as house work goes maybe there are devices that can help...I use a swivel head very light mop that you attatch a wipe to and throw away to clean floors..no rinsing clothes or hard arm and hand work.

Feather dusters on a stick are better than nothing for dust and cobwebs....a light electric rechargeable sweeper instead of a traditional heavy hoover alo makes carpet cleaning easier.

Please let us know how you get on...if double the dose of lyrica helps and is still within guidelines maybe your doctor can be persuaded to increase it...surely his/her aim is to make your life as comfortable as possible.

You are right this illness is awful worse for some than others.
diamond is offline  
Closed Thread

Tags
back, bed, brain, cymbalta, diet, emg, exercise, fibromyalgia, gabapentin, ibs, insurance, marijuana, medical marijuana, mri, neck, pain, problem, relief, research, sleep, social security, symptoms, test, tingling, understanding, wanted, wrist


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Similar Threads
Thread Thread Starter Forum Replies Last Post
Fibromyalgia for over 26 years? carljr17 Alternative Medicines / Therapies 5 09-15-2016 08:50 AM
19 years old with Fibromyalgia Jordan General Discussions About Fibromyalgia 27 07-03-2016 11:13 AM
I've had Fibromyalgia for 11 years fuengirola25 Welcome New Members - Say Hello 3 05-22-2014 02:35 PM
Hello Everyone! I Am New To This Forum Yet Have Had Fibromyalgia For 31 Years Now! Syndi Welcome New Members - Say Hello 4 05-26-2013 01:38 PM
Had fibromyalgia for six years norleanslady General Discussions About Fibromyalgia 3 02-11-2013 10:07 PM

 
All times are GMT -5. The time now is 08:32 AM.
Copyright © 2017