Stories

Conversation

Understand

Join Us

 

Chronic Pain

First, understand it.

Read more

We walk a mile in your shoes. WE CONNECT WITH YOU we listen, offer hope, support and accept YOU.

Introduce Yourself Here.....

More
5 years 4 months ago #13017 by weather
weather replied the topic: Introduce Yourself Here.....
***SORRY THIS BECAME VERY LONG***

Hey everyone, I'm weather, I chose that name because A. it fascinates me and B. it can wreak havoc on me and my pain levels, especially since I live in Melbourne. I honesty can't tell you how long my pain journey has actually been. It's complicated but I'll try and explain as best as possible. I'm male and 42. It's great I found this place, there was nothing like it while I was searching, so I gave up on finding an Australian one. THANK YOU!!!! Please hear me out or read this right through before passing judgement half way and stopping. I'm also sure this story or similar has been told too many times to count

Two years ago literally to the day I was diagnosed with chronic Fibromyalgia, yes I know the dreaded F word that's "ALL IN MY HEAD," and because I'd suffered from bouts of depression that started in my mid 20's I had NO CHANCE. Now I can look back and that was when the pain flare ups began. I had a physically and very mentally demanding job as a location news cameraman with shift work and strict deadlines every single day. I'd do up to 10 day shifts. Anyway those 13kg cameras are rather heavy after a while as is the 8kg tripod not to mention a bumbag full of spare batteries, tapes, etc..... So I was a walking pack horse for 20 years. I've since had 3-4 more bouts of depression during that time which all coincided with severe pain. I just never put the 2 together until the last time it happened the pain was so bad I had muscles bulging so far out of my back, neck and under my shoulder blades that people could see it through clothing and say oh my god what is that. My myotherapist (complex combination which utilises different parts of deep tissue massage, dry needling, physio, chiro and osteo all in one) at the time refused to touch me until it settled down and said get to your GP ASAP, he was away so he immediately rang a clinic around the corner for me. That Dr. actually gasped and threw Endone and Valium at me, took detailed notes and e-mailed my GP for me which I though was amazing.

I hate psychiatrists but I think I have good reason too. I was going from one to the other in the end, because I'd finally put 2 and 2 together but NO, I hadn't in their opinions. I lifted my shirt a few times to say, "so you're telling me, my back is like this because I'm depressed and 3 said YES! The others didn't answer me. Oh I was depressed alright because I was in PAIN, not the other way around. The self doubt they kept instilling in me VANISHED after they had the nerve to say depression was causing this, PLEASE HEAR ME OUT as I know this is possible and does happen occasionally to people. This is very important to my story too because I also have very strange reactions to medications and psych meds especially. Anything that messes with my serotonin sends me nuts and also gave me serotonin syndrome twice, once was from 2 doses of cymbalta at the baby dose of 30mg. So those black box warning they started putting in anti depressant rang true for me, they sent me into suicidal black holes of despair with shocking mood swings that weren't there before the meds began, making me so much sicker that the psychiatrists would be like see you really are in a bad place and because I had been second guessing myself I started believing them ***(BUT I have seen them work wonders for others, this is my reaction and story only! Every single person reacts differently to different medication )*** I was so doped up from one in particular, I could hardly get out of bed, I made an emergency appointment to see the prescribing psych and told him I was absolutely FLIPPING out from these pills and was having thoughts of self harm. He said just push through it. That was the last one I ever saw. My AWESOME GP wrote on every referral *severe adverse reaction to ANY meds that act upon serotonin.* Even things like Tramal and Maxalon act on serotonin and mess with me, yet they always knew better and would swear black and blue this will be OK. They lied to my face and the reason I'm saying all this is because my GP had worked at a major psych facility for over 10 years in admissions/intake and personally knew most of these people and was utterly shocked that they ignored his notes on the numerous drug interactions and warnings on his referrals, so....... we agreed no more Psychiatrist's for me, but Psychologists ABSOLUTELY YES!!! A good psychologist is priceless, and I mean absolutely worth their weight in gold.

Cue Neurosurgeon, Oh and by the way. I have been on loads of different meds (mainly psych) over the years due to the above story and constant misdiagnosis. The average Fibromyalgia diagnosis is 10 years, do you have any idea how much money these desperate people pay on average before getting a diagnosis? $80,000 to $100,000. Now back to Neurosurgeon who literally diagnosed me within 5 minutes but couldn't say anything until I had all my scans and blood work done, so when I walked out I thought I JUST GOT LISTENED TO and went and had , CT, MRI, Nuclear Medicine Bone Density Scan, X-Ray. Blood tests. When I went back again I noticed the same points on my body were being pressed again because they really hurt. like last time, I was told I reacted severely to 14 out of 18 trigger points for Fibromyalgia and was asked do you know what that is? I said no, it was all explained in great detail with no rush and opened up for a Q&A session, I was told my blood work is clear for inflammation markers which is good but the scans showed up some other problems, you have early onset osteoarthritis in your entire neck (thoracic) and both shoulders/girdles, 2 fused vertebrae in your neck and a tumour in your femur which is common but not to worry about unless it gets painful. I was also an in operable case, so a pain management plan was put in place, sent to my GP as they could do nothing more for me. I was put on a few meds 2 of which didn't agree with me but within days I had FINALLY been given 50% of my life back.

I have no problem admitting I've suffered from depression BUT I will say this, getting your medical history dragged out of the depression pigeon hole and into CP management is SO HARD because when you give someone anti depressants and anti psychotics and they also have undiagnosed ADD too, it sends you stark raving mad, then your psych history becomes EXTENSIVE, well it did for me anyway and once everything was properly diagnosed and new CP and ADD medication trails began, I've found a medication balance that lets me cope, my pain still fluctuates but I'm not longer bedridden staring at the roof and walls. I've also LOWERED my Oxycodone intake over the last 2 years AS WELL. I no longer take endone for break through pain and my base of oxy-contin has remained at 10mg for 2 years. I also have breaks and can go cold turkey from oxy with NO problems whatsoever BUT coming off psych meds, numerous times is quite possibly the most horrific experience I've ever been through. Why isn't there so much more warnings and information about coming off anti depressants in particular, it is utterly horrendous and a huge percentage of people who take them have this experience which is conveniently called DISCONTINUATION SYNDROME because you don't crave the drug, it is HARD CORE withdrawal. They're usually given no warning or idea what has hit them and also not told that some people can't actually never stop taking them because they can't get through the withdrawal process and it can last for years for some people. I'd just be incapacitated for 4 week of hell, it makes opiate withdrawal look like a walk through the park compared to an absolutely relentless onslaught from antidepressants ( FOR ME!!!). Not everyone experiences this though but if you do, put your seat belt on because it's one nasty bumpy 2-4 week ride and the only thing that stops it is another dose (WITHDRAWAL). I want the medical community or AMA to acknowledge how severe this can be because you actually get so sick you can't get to the Dr. so they don't see enough of it. For me it's like I've had a power lead hard wired into my brain and it's set to 30 second intervals and BAM, brain zap/electric shocks sends you reeling as it shoots down your spine to your toes and just as it stops BAM another one hit, for WEEKS, accompanied with vertigo, pins and needles, vomitting, just google it. Can anyone else relate to this and how severe it can be for certain people? The worst thing is you'll never know unless you try them. I have tried tapering and gone cold turkey, absolutely no difference. One that made me realise they help some for pain, because I tolerated it the best was Zoloft and when I got over coming off that I forgot how sore my body was but the others never did that for pain.

I also did a Fibromyalgia and ME/Chronic Fatigue Syndrome course which helped greatly and they also have monthly support meetings as both syndromes have a large cross over in symptoms and a lot of people have both. I haven't been able to work for 2.5 years after working like a mad man for so long. I had to move home with my parents at age 40 which was very hard for me because I moved out of home at 19 and have always been very independent. I'm not complaining I have a roof over my head and food on the table. I've finally begun to come to peace with my pain and after about 6 years of daily agony, 3.5 of which I just worked through. I look back and have absolutely no idea how I did it. I've also begun to have a few pain free day this summer which is a new experience, it's great but it can make me feel guilty, I'll sort it out and nice to meet you all

Thanks for listening

I react to 80% of medications very differently to others, DO NOT EVER let one one MY stories EVER stop you from trying something. We are all so different. It might be the key to relieving your CP. May your trip on The-Med-Go-Round be a short one!

Please Log in or Create an account to join the conversation.

More
5 years 4 months ago #13018 by BIY
BIY replied the topic: Introduce Yourself Here.....
Welcome Weather :)

OMG! I felt like you were telling my story!!!

I actually changed my profile name to BIY (stands for Believe In Yourself) and my avatar is a painting that I did through an online art class that uses art to work through and express emotions and past hurts.

Not only can I relate to your experience with medications, I also now have a permanent side effect of Restless Leg Syndrome (which I'd never had before) from a medication I was trialled on in 2011 and was only on for a month or so.

Not to try and top you, my psychiatric past depression history is not only on display from one doctor to the next that I see, but also for the courts to see in a work injury claim (and my condition of TMJ or jaw injury) was not diagnosed for 4 years after a work injury because the docs didn't know where to look or why my pain wasn't healing....and it was because they looked at the past psychiatric history and, as they were looking in the wrong part of my body for the symptoms I was describing and could find nothing, put it down to psychiatric. It took 4 years til finally a dentist picked up the problem and an MRI confirmed that I had damaged my jaw in the fall...but because it hadn't been diagnosed or treated, had turned into chronic pain (CP).

So mate, I feel your frustration and boy can I relate to past depression haunting and colouring diagnosis.

Even now, my weird reactions to medications that usually come under the "on rare occassions" part of the literature the pharmacists have on their computer has been up for question as being psychologically based! And yes, the physio could see the muscle spasms through my skin when he was trying to do acupuncture while I was on Cymbalta...and, yes, Cymbalta is usually prescribed to help rather than cause this kind of reaction!!

I am now 7 years down the track since the injury and CP has well and truly taken hold. Like you I tried to 'push past the pain' and keep working while living on painkillers for a few years until the pain finally won and I can't work now either.

Welcome to the forum Weather. I just thought I'd share my story with you to let you know you are not alone. You will find you are among a bunch of people where your CP problems are very much shared. And while we all have different conditions, there are common factors amongst CP sufferers that we can very much find common ground on and therefore support each other in.

Best wishes,
Fee
The following user(s) said Thank You: weather, phoenix

Please Log in or Create an account to join the conversation.

  • Mary
  • Mary's Avatar Topic Author
  • Offline
  • Platinum Boarder
  • Platinum Boarder
More
5 years 4 months ago #13019 by Mary
Mary replied the topic: Introduce Yourself Here.....
Hi Weather and welcome. That is one heck of a story! You have had a long journey before finally getting the right diagnosis. Unfortunately, the longer we have pain before we get some kind of diagnosis, the more likely it is that it will be thought to be in our head.

Recent research has shown that people with CP have changes in their brains which is thought to be the trigger for maintaining the pain. There are other people on here with Fibromyalgia who will be able to recognize your path to a diagnosis. I know several people with it and their stories are similar to yours. It is one of the last things that is looked for, possibly because some people don't believe that it is a condition! I think that most Rheumatologists recognize its existence.

I think that there is a crossover of symptoms with all CP patients and, now that they are beginning to recognize changes in the brain etc., I guess it is understandable why this happens.

As you may have read, we have lost all our threads during a software update a week ago. We are hoping that they will be able to be retrieved sometime this week and then you will have lots of reading to do :)

Meanwhile, feel free to ask any questions and keep us updated as to how you are going.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
The following user(s) said Thank You: weather

Please Log in or Create an account to join the conversation.

  • Peter
  • Peter's Avatar
  • Away
  • Administrator
  • Administrator
  • peter.gregory@chronicpainaustralia.org.au
More
5 years 4 months ago #13022 by Peter
Peter replied the topic: Introduce Yourself Here.....
Howdy Weather. Like the monicker mate!
Welcome to the CPA Forum.

I am also a Fibromyalgia sufferer. And the weather kills me too. Anytime a low pressure system comes in, I get really ill.

Was diagnosed in 2002, but have suffered the symptoms pretty much my entire life. Now in my mid 50s and unable to work since early 2002, life has certainly been challenging and of course like you, I have no idea what my future holds for me. Actually, anyone suffering chronic pain of any kind, will have an uncertain future.

Sorry to hear about all the troubles you had with psych doctors and their use of drugs on you for things that you never suffered from. They have a lot to learn, and Weather, you will find that many people here have experienced similar problems over the years with some doctors. Others have been very fortunate to find themselves a good doctor.

I did see on a Fibro website many years ago, where they said that there was some work or studies looking into whether or not Fibromyalgia caused or brought on ADD type symptoms. They apparently believed that the person did not necessarily have ADD, but the symptoms were very similar, but because with Fibro sufferers there is a lack certain chemicals in the brain and spinal fluid, the ADD medication actually has some beneficial effect on their symptoms, plus it helps with pain.
I cannot for the life of me remember what website that was on, but you may be able to Google ADD and Fibromyalgia to see if there were any inroads made in that area.

Mate, it's good to see you here. So, kick back and enjoy your stay. Join in on any discussions. We are experiencing some problems with our forum software, so please bear with us until we get things back to where they were.



Peter B)

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
The following user(s) said Thank You: weather

Please Log in or Create an account to join the conversation.

  • Mrs Shingles
  • Mrs Shingles's Avatar
  • Visitor
  • Visitor
5 years 4 months ago #13029 by Mrs Shingles
Mrs Shingles replied the topic: Introduce Yourself Here.....
Hello Weather, so glad you have found us . Sounds like you have had a helluva journey, and I'm glad you have found us.
Sorry for the shortness of my post, but I am recovering from being hit by a 4WD yesterday, and my mind is foggy from the painkillers. But just wanted to drop in and welcome you to our group.

Please Log in or Create an account to join the conversation.

More
5 years 4 months ago #13030 by weather
weather replied the topic: Introduce Yourself Here.....
Thank you all so much for your fast amazing and inspiring replies.

It's greatly appreciated and low pressure systems, troughs and cold fronts made me laugh.

Out of all the different Dr's and specialists I've had to deal with psychiatry has a lot to answer for and needs a huge overhaul and most importantly they should all have a strict full psych evaluation themselves to practice because I worked with reporters for over 20 years and I know control freaks all too well, psychiatrists are by far the worst I've had the misfortune of dealing with.

W :)

I react to 80% of medications very differently to others, DO NOT EVER let one one MY stories EVER stop you from trying something. We are all so different. It might be the key to relieving your CP. May your trip on The-Med-Go-Round be a short one!

Please Log in or Create an account to join the conversation.

Moderators: Johnnojo.m
Time to create page: 0.229 seconds
Chronic Pain Australia

Sometimes the journey TAKES YOU TO A PLACE UNMAPPED. Anything is possible

-Chronic Pain Australia

national.office@chronicpainaustralia.org.au

you're not alone

Postal address

PO Box 425
4 Melville Street
Baulkham Hills, NSW 2152
Baulkham Hills, NSW 2153
Australia
Australia

Contact us

media
media enquiries
media@chronicpainaustralia.org.au
general
general
national.office@chronicpainaustralia.org.au