Introduce Yourself Here.....

Hi Harry,

Welcome to the forum. I am sure that you will find heaps of support and tips for pain management here. The great thing is that we all understand what we are all going through, so you won't encounter any stigma or disbelief here.

Keep reading and keep us posted as to how you are going. Have you been able to get into a pain management course at any stage? There are a lot of different pieces that belong to the pain jigsaw and a good pain management program is one of them.

All the best,
Mary

Harry,

Just giving you a big warm welcome. Same predicament with workcover (wc...or toilet; take your pick!). Just going to enter yet another fight for treatment while feeling worn down from chronic pain.

A tip I recently learned is that wc will just about automatically say "no" to most treatment requests. I have found this very stressful and upsetting because I still do not have a stable pain management plan in place and am dealing with all the things that go with being in pain and poor sleep daily.

WC insurers bank on us giving up (immoral, unethical shocking inhumane system).

I thought I had to fight all my battles myself and I am so exhausted from it. I found out recently that if you have a good solicitor, they will not muck about, but will just take it straight to the ACCS and fight on your behalf for the treatment.

It still sucks because it is exhausting gathering all the doctor's letters etc for the evidence, but once you do that, you can hand it over to the solicitor to take care of.

Here's the link to the ACCS:

http://www.conciliation.vic.gov.au

Don't give up mate; that's what they're banking on. The conciliation officers, I reckon, see insurance companies trying to get out of paying for legitimate treatment all the time. They treat the worker with respect and seem very fair.

Best wishes,
Fee

Also a big warm welcome to all the other new people who have joined this wonderfully supportive forum recently.

I hope you find comfort in meeting others who can share empathy because they know what it's like to walk in your shoes.

Best wishes,
Fee

Welcome Harry
The forum provides a wonderful place to chat to others who understand what it is like to have pain take over your life. Pain management clinics are the way to go to get back some of that control. I hope you enjoy the information, friendship and support you will find here. Look forward to more chats

Sending you a smile 🙂
Wendles

Hi all,
I am Bec, 34 (in a couple of weeks) full time step mum of 3 and work part time.
I was diagnosed last year officially with fibromyalgia however the specialist thinks I could have had it for as long as 12 years before this. I have had hypermobility in all my joints since primary school (earliest memories any way) which doesn't help at all... I have also recently been diagnosed with diabetes so need to look after myself well.
As a result of the fibromyalgia I am now on Cymbalta which has been great and I can't miss otherwise it takes a week to catch up!
Does any one else suffer from Fibro?!!
Looking forward to catching up with everyone's posts!
Cheers,
Bec

HI Bec,

Welcome to the Forum!

I'm another fibro sufferer and have had it for pretty much my whole life. I'm 55 and have suffered chronic pain from the age of 3 which was due to whiplash injuries from a car accident. I think the fibro kicked in when I was around 8 or 9 years of age, because I remember the body wide pain hitting me hard at that time of my life.

It's been a long hard journey I can tell you. I can't swallow that Cymbalta stuff, it makes me very ill. I am on Lyrica for my spinal problems, which were made a whole lot worse in 1985 when I got hit in the rear end by a fully loaded metro bus that had no brakes and I was stopped at the traffic lights. This thing was doing between 60 and 70 kph and boy did that hurt.

Anyway, I hope you find enough information and support here to make feel at home. I know the support will be here, because there is a great bunch of wonderful supportive people some of whom suffer terribly and they know your pain.

Please feel free to join into any conversation, because Bec, you will have some tips that may help others, even just being able to listen is a great comfort to those of us who are isolated and suffer badly.

Peter

Hi Peter,

The specialist thinks mine might have been set off by a car accident also!

Cymbalta was awful when I took it of a day time... I couldn't function... but when I switched to night time it was fine...

My husband finds it a struggle to cope with my lack of wanting to be touched... that's one thing I wish I could fix!

Cheers,

Bec :unsure:

Hey Bec,

Yes, I can imagine that not wanting to be touched would be a big problem and eventual wall between the two of you. Touching in a close relationship is one of the greatest modes of transferring love and kindness.
I have suffered with that for years, but it was very bad for nearly 3 years about a decade ago. Even wearing clothes was very painful and having a sheet on me in bed, felt like I had a thick sheet of Lead lying on me, I could hardly breathe. It did go away though for the most part. I am a single father and have no one in my life except my kids. And when you have kids, touching is still a huge connection with them.

I still hurt when touched, but I force myself to ignore it.. Damn the symptom. I am not going to allow it to take the one thing we all enjoy away from me.

I don't know the full list of side-effects for Cymbalta, but it might pay you to look into them. There is one thing I found with Fibro and it can also be with others who just have chronic pain also, you tend to create a chemical sensitivity that leaves your skin super sensitive and the underlying tissues and muscles feel like you were bashed or run over by a truck, just a few days ago.
These symptoms are very often common with fibro sufferers, but can be exacerbated by drugs.
But in general, all drugs seem to really affect us fibromites.

I guess you have tried to tough it out and rise above the issue with touching?
If not, then you may have to give it a go. Just remember to talk to your husband and let him know that it will need to be done in baby steps. You need to get your brain (our stupid damn brains have invented this crap) to realise that there is not threat and it is okay for someone to touch you.

If you want to know more about that, let me know.

Have you been to a 'multi-disciplinary pain clinic?' If not, you have to go, because they will teach you so much and help you understand why you are in this predicament. Ask your doctor and get a referral.

Apparently one of the major causes of Fibromyalgia is a trauma of some sort, and the worst or most common, is whiplash injuries. It's like a life sentence, but you can live with it. Just NEVER rely on drugs to improve your lot. You must take control over your condition and dictate to it, not allow it to dictate to you.

So lay out your activities in a structured manner and rest often. even very short rests can be very helpful.

Peter

Hi Bec and welcome to the forum, Peter had a point with sensitivity, mine is a back injury which has affected my left side, my left leg has two opposites, my shin is dead as a door nail no feeling what so ever, while this may seem a bonus as I feel no pain, the down side is you could cut yourself and not know it and I am on blood thinners for heart conditions so clotting is an issue, then there is the opposite heal and foot, the heal is over sensitive to any touch and my foot miss reads temperatures, what is hot is cold and vice a versa, many times I have burnt my foot testing a bath.

Welcome again reading peoples journeys helps others and lets them know they are not alone.

Don

Hi Bec and welcome.

I don't have fibromyalgia but I do have some friends who have it and they also suffer with the hypersensitivity to touch. I can get like that occasionally when I have overdone things (or not) and I have a flare up. I had one physiotherapist who would do tiny circles all very lightly all up and down my spine and shoulders and that would "de-sensitize" the nerves as she put it, and sometimes I would get hours of relief from that.

I have taught my husband to do it, but he finds it difficult to keep the touch as light as is needed. He says he is barely touching me and I say it feels like he is putting all his weight me!! However, I have had several hours relief from that too. I don't get that bad very often fortunately. My pain is neuropathic and it tends to go to one area and settle there. It can make things confusing because sometimes I am not sure whether something is wrong or it is just the CP playing games with me 🙂

I am not sure whether that technique would work for someone with Fibro or not, but it may be worth a try. If you can calm down your CNS then you might settle the pain a little.

The other thing that I would recommend would be a multidisciplinary pain clinic. As Peter said, they will teach you so much. You can learn to manage your pain in such a way as to be able to engage with life again. If this happens, you might find that your sensitivity decreases enough for your husband to be able to touch you without causing you so much distress.

All the best,

Mary

G'day,

My name is Warren and I live with chronic pain. The pain is well managed using a combination of drugs and lifestyle approaches.

The cause of the pain was not detected for many years. Dr's would order x-rays and read the radiologist reports and tell me there is nothing wrong. The problem was that they were looking in the wrong place.

Eventually, a Dr decided to prescribe oxycontin 40mg b.d. I was naïve to this stuff but found it to be great relief.

I got a job in another town and when I ran out of oxycontin I went to a Dr in that town who agreed to prescribe oxycontin for me but explained a little about the drug to me.

One day, during a consult with that Dr for another script, he asked if I had ever had a ct scan done on my neck. I said no, never. He was quite surprised that I had been taking oxycontin for so long and had never had a ct done on my neck. Anyway, one was ordered and at about 7:30pm the Dr phoned me at home and asked a few questions and next thing I know I am sitting on the 10th floor of a hospital in Brisbane speaking with a neurosurgeon.

He fused c3/4 and c5/6 adding space where the nerve exits the cervical spine. This procedure worked well for about 6 months. Long enough to get off the oxycontin and live without the electric pain down my left arm and into my fingers and thumb. Then, I woke one morning and I moved my head and my neck cracked, nothing unusual for me as it crack all the time, only this time the pain down my arm and into my fingers returned. I went back to my gp asking for pain killers, he reluctantly gave me some and sent me off for another ct on my neck. The radiologist could see nothing wrong and the gp simply read the radiologists report without looking at the scans. I went back to Brisbane and the neurosurgeon looked at the scans and said, its quite clear what has happened here, the cage he put in between c5/6 had collapsed slightly on the left side. So he arranged another procedure where he went in from the back of the neck and took bone away from the nerve. This procedure has worked to this day for the arm and finger pain, not for the left shoulder pain or scapular area pain. I asked if anything could be done surgically and was told all that could be done has been done.

Now I see my pain as being part of me, it's not going to go away, no amount of drugs, unless I were to be totally anaesthetised, will make it go away, so I live with it always being there.

Anyway, that's my story.

Cheers.

G'Day Warren

Welcome to the Forum.

Sounds like you were lucky with your neck. I gather if you didn't have the operation/s your neck problems would have gotten a lot worse?

It's good that you have accepted your pain as part of you, because for the vast majority of pain sufferers this is what they will need to do in the long run. The longer they take getting there, the harder it is for them..
And you are right, drugs are not the whole answer. Only part.

Peter

Hey Peter,

I have a very supportive hubby and step kids... they are all aware of my pain levels and I am able to communicate with them when I need space... (eg when I am extra stressed)... still not great though 🙂

My sensitivities are much better since being on the Cymbalta! I don't mind it... if I miss the tablet is when I really run into problems...

I haven't been to a pain clinic but at this stage I don't feel like I need to... I have been using massage 3 weekly to help manage my pain which has been great, I have a very sympathetic personal trainer and a physiotherapist and I have also seen a psychologist (she was the one who originally pushed me to get the diagnosis)... As a bonus I also have a nursing background 🙂

Cheers,

Bec

Bec have you thought about doing a pain management course, I know you mentioned you are a nurse, but these courses are designed to help you understand and cope with chronic pain in conjunction with medication, A lot of the course may seem basic because of your background, still it would still be worthwhile learning the tools needed to cope with CP.

Don

Hi Bec and Warren

Welcome to the forum I hope you find as much help and support here as I have 🙂

Illeatyu