Introduce Yourself Here.....

I can understand the whole process that you have encountered.

I feel that he medical profession needs to review its whole treatment and attitude to pain management. No patient is in too much pain to benefit from relaxation, meditation, tai chi, yoga based treatments. The studies have all shown that the earliest the intervention with relaxation and holistic treatments the better the results.

The difficulty again is education, cost and availability of treatments. It is accepted to try many and all medications and see many so called specialists but alternative therapies are not readily accepted.

We are now encountering more and more a resistance to invasive / surgical treatments. For so long these treatments were considered the only option and often as CP sufferers now attest made the situation much much worse.

We had to take control of our medical conditions very early on as we lived in remote Queensland when diagnosed and only had access to locums for years. We were very lucky to during this time meet a very good naturopath and Palliative care / Emergency Care Specialist.

They helped us obtain a better understanding of our health and situation and greatly encouraged us to try anything and to learn. Most importantly to be in charge and responsible for our health. This was not and is still not a very popular stance.

Our illness requires us to try to retrain our brains. Medically there is not a lot of options for us. We have been likened to Stroke Patients and need to reprogram the signals too and from our brains. it is not a quick or simple task and it is expected take a number of years. It makes for a very interesting life.

Ray & Terry

Thank you for that very informative post Terry.

I agree with you regarding the early intervention. I was in considerable pain and very scared when a doctor recognized my fear and sent me to a pain psychologist. I also did a group self-managment course that taught me how to manage my own health, how to communicate with health professionals, how to manage emotions etc. etc. It was still a couple of years after the surgery that had sent me into CP, but I did benefit a lot from those two things.

You are right in saying that the medical profession needs to review the whole pain management area. Unfortunately, I can't see this happening any time in the near future. There are certainly many informed health professionals within pain clinics etc. but it is really the GP population that needs to learn more about CP and the people who have it.

Mary

I really like hearing what you have to say Terry cos it gives me another view point to think about.

I had been so busy just being rapt at 'being heard' that I had not thought about it from your point of view. However, why it made sense to me is that I have been in such high pain levels for most of the 2nd part of last year that all the Acceptance Commitment Therapy, Mindfulness etc that I had learned in pain management had bit by bit gone out the window because the pain was so intense and I had no pain relief medication that I could tolerate so it just became a matter of existing through the day. The reason I can see the sense in what he had to say is because since starting the Norspan patches recently, it has brought the pain down to tolerable levels so that now I have the headspace to be able to incorporate the self management tools such as ACT whereas before it was just a wall of blinding pain.

I find I have changed along the way cos I went into pain management determined to embrace all the non medication tools available and steer clear of any heavy duty pain killers. But, after my condition worsened last year and the pain escalated and how my life deteriorated and the difference now with some pain relief...I see it as a combination approach. Bringing the pain levels down is enabling me to start rebuilding and implementing all the other non medical tools to some quality of life. For the first time in many months, today I started a new painting...something that I love to do to distract me from pain and bring me pleasure, but had been in too much pain to be able to do.

Thank you for opening discussion about different ways to approach CP. I value your input after dealing with it for so long and would love to hear more about the things you have found helpful.

🙂 Fee

I am glad that we are of help, or even just opening a different thought path. We both have had many years of just medication, which sadly left us sicker than the start.

I would never advocate no prescribed medications, no surgery. We both do advocate try all options. Try a combination of therapies. Any therapy that you do try give it time to work. Please talk to your Drs about what you find works and what alternative medicines you would like to try. If your Dr doesn't talk to you find one that does.

The most important thing is ME TIME! Do what you love in any way or form that you can or learn a new love.

We had to start our lives all over again a very frightening step to take. We did it and survived but that is another story!

Terry.

I agree regarding the medication. You definitely need some sort of pain relief to enable you to make the most of pain management courses - whatever they may be. I was lucky in that respect. Lyrica took my pain levels down enough for me to be able to use my brain, even though it gives you short term memory problems!LOL

Mary

Me back again.

We are a strange couple here due to our illness, the damage that was done through trying to manage with lots of medication and due to what RSD does to the body we are unable to use most of the pain medications.

Currently we are limited to panamax and like. We use natural medications. Our bodies shut down when given stronger medication. Because of this and the current RSD list of complications for long term sufferers the patches and drips are being kept for possible surgery and further deterioration.

Long term use of any medication eventually reduces its effectiveness. Local anaesthetics and blocks do not have any effect on our bodies.

Hi Terry,

Would it be ok if I asked you what type of natural therapies you use? I know everyone is different and what works for one does not necessarily work for another. E.g. a lot of people have advised magnesium powder helps with restless leg syndrome, but I found it made no difference whereas others swear by how much it has helped them.

I would really be interested to hear alternatives you've discovered as I think it is always good to keep an open mind. We share about different medications and procedures on this forum so I don't see why alternate therapies can't be discussed too (as long as that is ok with you 🙂 ....don't want you to feel like you've only joined two minutes ago and already I am picking your brains. It's just that alternate therapies has not really come up much and is really interesting.

I agree with you about finding something else...for me it was discovering mixed media art last year. Our lives are never going to look the same as they used to pre CP, and for me there was a long grieving period to come to terms with that. Art has been the change in direction for me.

🙂 Fee

Wrong section,my bad

Hi Fee, I don't mind answering questions. Pick my brain as much as you like.

Firstly I will say before using vitamins / supplements I do think it is preferable to visit a naturopath at least.

Make yourself very familiar with the drugs you are already taking and checkout the interaction website.

Ray was taking zyloprim for arthritis and decided to use a natural give up smoking remedy which contained St Johns Wort.This caused a drug reaction. Now no dr or chemist were aware of the reactions between these two items, I found a mention on an obscure USA website..

Anway as for what we use Glucosamine tablets, RSD causes osteoarthritis and found that the Glucosamine helps with the pain. Vit B 6 or mega B this helps with the nerve pain and muscle spasm. Magnesium, not the powder. It can be purchased as Zinc Magnesium and B6, By natures Own. We used for lots of years and only changed as I am requiring a bigger does of magnesium to counter headaches.

The best thing i found was Dandelion tablets this helped relieve the chronic constipation we are all familiar with. It is mild and does not upset tummy too much. It also aids the liver. i had a poor liver and now it is almost back to normal. Not a 5 min fix but good.

Grape Seed tablets are good also but are more for detoxifying so can be a lot harsher.

Since I cannot use antibiotics I use Golden Seal, it is a little harder to get. Natures Own make it. It helps with cold and flu symptoms as well. It is a liver detox so one tablet at a time to begin with....

then the good old staples, vinegar, lemon, honey, chilli, garlic soup, miso, shitake mushrooms.

I use Yoga, Tai Chi, Meditation, anything along these lines also to assist in pain management.

Our story is long and complicated suffice to say when I take most medications my body functions shut down. I have had to take over my treatment and learn.

For example if i take fish oil capsules my Vit b level drops very low, so low I was on injections for 12 months.

Hope you find that interesting

Terry & Ray 🙂

Hi All,

I have moved our discussion on varying thoughts, ideas and alternative ways of managing Chronic Pain (CP) over here to it's own thread.

I think between us all we hold a wealth of wisdom and it would be good to have a separate topic in which to discuss different ideas and revelations that we have discovered along this often rocky and 'trial and error' journey.

Best wishes,
Fee

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

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

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

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)

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.