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JamesB

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Joined
Aug 3, 2015
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5
Reason
DX FIBRO
Diagnosis
00/0000
Country
CA
State
ON
Been 6 years now since I tried to get guidance/help from a doctor.

2 1/2 years before that:
Had a traumatic flare in my wrist/hand/elbows put me out of work but kept getting worse. Pain went from seperate to connected and started traveling till it made it from my ?palms? to neck at the jaw. Mania level Anxiety and IBS that lead to extreme insomnia, pain pulses that triggered convulsions, wasting: from 195 down to 135lbs in three months at 5'11 (back up to 155).

My legs Ankles/knees blah blay blah were not problematic and my lower back was fine despite my completely collapsed arches. Doctors and Specialists did not like that at all. WHY am I not complaining about my ankles. They could SEE those were screwed.

Over 2 years of ER's, multiple GP's, Physiotherapists, a 'leading Rheumatologist and Neurologist that specializes in carpal tunnel diagnosis. Nothing to see Nothing to say but I realllyy needed to do something acorrding to them. Figure it out myself I was told.

Well I figured it out myself.

Problem is I can't seem to deal with all of it by myself.

So here I am. Hi
 
JamesB,

Welcome.

have you tried to find the tender points test online?

have someone do that test for you.

read my post under general discussions called "what is fibromyalgia"

stress = pain
pain = no sleep
no sleep = fatigue
fatigue = pain and brain fog.

see if the post helps, can ask us questions.

there are things you can do to get reduced pain.

you cant do this on your own.

find a fibromyalgia doctor near you.

ask the local hospital case worker for a doctor referral.

that not right for them to leave you on your own like that. report that doctor.

i understand the never seen it ,dont know how to fix it.

you can view my post "i need help with my metal reaction"

welcome and please post so we can help you.
 
****sweet mother of rambling posts this is what happens everytime I try to write about this. I really struggle with where to start or when to stop, and the more I try to the more overwhelmed I get*****


Thank you for your response and welcome to the forum.

I didn't realize until after reading your post that I didn't actually say anything about the nature of my current state or how I got here.

I tick off every box on the checklist with a few others. I have an intolerance to cold(guaranteed pain), and a non-responsive/hostile reaction to NSAIDs/muscle relaxants(ibuprophen is useless, naproxins are nasty and clonozapam is scary death), I haven't touched opoids and am quite frankly afraid to touch them given the way I build a tolerance to pain killers, its fast and it stays. I need to know there is something out there more or less guaranteed to work should I feel a dire need.


*****it was here that I decided I would mention my pot use and felt it needed just a tiny little bit of explaining............. and let the second round of rambling begin!*****


Insomnia is what led to figuring alot of this out. I long thought much of my anxieties were a result of insomnia.
Try to go to sleep - get anxious or nervous ticks
Wake up to alert state - get irritated -get despondent
Eventually pass out 3 hours before you need to get up
Wake up 1 hour before you need to (should you stay up?)
Wake up with 5-10 minutes to get out the door
Panic and curse your insomnia: it's what's making you anxious.

I was told it was always my own doing, I had to be not dealing with something or it wouldn't be happening.

In my twenties I really discovered alcohol. In my alcoholic days I noticed if I drank myself stupid I could pass out at the worst of times. Problem was it also made me feel like I'd been tossed in a bag and beaten with clubs. I'd tried weed a couple of times but always while drinking, never alone. I was desperate for social engagement so I didn't really jive with something that I felt interfered with that. College changed that with a change of environment. I found a level of acceptance and engagement that I was actually comfortable in my times alone. Simply put I smoked more and got to understand the interactions better.

It wasn't until my last 2 years of college that I got the idea to use marijuana to deal with insomnia. I had friends that were pushing me to smoke up during the day. I'd complain how it really makes me want to just pass out, and when I do it is a looong nap. I was always super tense and aggitated and it got me super relaxed and content. After a week of following a disciplined regiment of taking specific amounts at the same times I could get consistant quality sleep. I noticed I felt more energetic, less anxious and all around better when I got up


Over the years as the pain got chronic I noticed it also helped with that. When the nausea began to get chronic it also helped with that. It also flipped from it making me anxious to subduing my anxiety.

****my first attempt at responding is below. I felt it was too long-winded and was going on about how and why and still skipping what*****



Sorry for not getting back to your message sooner,

I've been going through the motions, getting re-registered with heath care
applying for a family doctor for the first time in 20 years, filing for medical benefits,
student loan relief...

I was really in an overwhelmed state when I signed up here. To be honest I only did so because I hit my view limit AFTER I noticed everyone was sharing city location and there were people in my area.

Long story short, my Social Anxiety finally lost out to a mix panic driven need and pain induced mania. When I felt my cognative functions going haywire I began using the most powerful triggers I could think of to essentially **** with myself in a way that forced me down a path where regardless of what I ended up deciding to do, I would be made to be evaluated at the very least.

When I say I messed with my own head, I mean I did some complex shit where I first "Boxed my Brain" I made an extreme declaration. That mandated an extreme response. Made it easier to set up strict boundaries about what was 'allowed to exist' as far as what considerations or concerns were going to be processed. Then I did the 'tell a family I did something before I did it to turn my anxiety towards things I could do. Finally I set up a strict discipline/reward regiment where I split my day in half and did at least one TANGIBLE thing I needed to regarding seeking treatment. But regardless if I was successful or not I took the other half of the day to clear my head with whatever stupid thing I want to entertain myself with.

I convinced myself to join here by feeding myself a nasty guilt complex for selfishly using sufferers knowledge and their personal experiences that were specifically shared to to help each other escape the isolation and fear. Taking, knowing full well how traumatic it can be to be public and honest, but without having the respect and appreciation to say: I am also here, and THANK YOU
 
Welcome, may we help u find wisdom and in wisdom find ye peace.
 
james. we are glad you came back and now understand were have been where you are. we are doing things to over come what you have been going through. please use the things we say as they do help so many here. im glad your getting to a doctor.

make sure you ask right up front before you go in there. does the doctor believe in Fibromyalgia?
get that answered first or save your money.

the pot is giving you the healing sleep and you need to continue with that. there are things you can do to reduce the pain and get the rest you need.
try the tapping technique. do breathing exercises at bed time and when you wake up. get out of bed, dont lye their. makes it worse.

black out the windows in the bed room. no tv,computers, no music. just dark and quiet. one hour before your set bed time.do some stretching and get in a hot shower, then cold before you get out. some find the cold water is better because the muscles contract. when your muscles are relaxed they are not sending messages to the brain to send pain everywhere. or over working your brain and nerves.

Now the meds i understand. im allergic to so many my list takes up a whole lined sheet of paper. even made me not want to try the harder drugs just like you. well i got on morphine and it took two years to get the dose right so i could function in the world. 90 mg a day. i had no reactions or allergies to it.
i came to terms that i needed somethings as crying in the back yard and my wife taking the garden hose and spraying me down only worked for so long.
until the right dose of the morphine i would go to bed screaming and crying and wake up screaming and crying.

it's going to take time to find what hard meds are going to work for you and the right dose. accept that you need them to function like a real person.
better to try then do nothing as i see you have come to terms with that.

i want you to read my post under general discussions called starting a daily log book and why it helps.
start the book do what it says and you will get the meds you need and the doses you need too.

i want to see more posts from you. what you dont see in your post is your Venting. that is helping you.
keep doing it.

get the healing sleep.

please friend me and forgetmenot. ask us questions if you need to in private messages.
post your questions please. you need to learn and you need our help.
we are here for you. you can count on all of us on this site to help each other.

i hope i have helped you today.

stay strong and stay your course of action. your doing the right thing.
 
Thanks cmetryme again for the attention.

I'm doing as much as I can handle right now and I am going to address your post eventually. It was going to be today but I just over-taxed myself responding to a new poster that's a little to close to my past attempt to get help.

That said, what I posted there was way more constructive and illuminating than what I was going to put here. So you did get me more engaged. I'm just limited in how much I can handle right now.

but I am better today than I was yesterday.
 
James,

one day, one minute at a time.

thats how we live our lives now.

please do respond as we all need input as to what helps us.
 
Hey,

I'm am working towards being more active in the coming weeks, I'm still working on swapping procrastination priorities. Choosing the right things to force and redefining what's inconsequential or unnecessary.

As I said before I am still undiagnosed and I just finished my first big spin on the medical merry go round. I'm still waiting on applications for a personal doctor, I have a date with a Rheumatologist but its not till Dec 11. After getting the Dec date and a 'maybe in Sept' on the G.P., I foolishly thought I could trigger a faster intervention by going the crippled mental state route. Bad Idea.

I think you have an idea without me saying anything of how that went.

Right now I'm living alone in an apartment I can't afford anymore, and no one else around me wants to accept the reality that getting a diagnosis is not going to do anything about the months spent waiting not working. They seem to be acting like there's a Red Pill with my name on it and its going to fix everything about my body, and then I can get fixing everything myself.

So I'm at way less than half capacity, stuck in every kind of Limbo you can have, and I've been left in the position of figuring out the most pragmatic solutions to unsolvable snowballing problems.

I've already begun the meditation of making peace with going back to living like a cave troll in someone else basement. When things are more stable I want to be a more accessible member. Less of an I and more of a We, if you catch my meaning.

That said I've been trolling forums since before they were forums; as far back as 'alt.fan. usenet newsgroups and open FTP domains, and I've already posted like 3 more times than I have anywhere EVER* and I'm still here.


(*except for facebook/the ever mutating cancer you give yourself that attacks fiercest when you try to ignore it...or was it when you engage it...can it be both?)
 
Welcome back James hope to hear more from you,x
 
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