Introduce Yourself Here.....

40yo looking for a answer so I can go camping and fishing again . currently not working lower back and knees and shoulders to put it short arthritis. had 2 shoulder surgeries. 5 left knee 4 right surgeries. nerve damage facet joint arthropy desiese as well I live with
my girlfriend who is now my carer .

Hey Braddo,

Welcome to the Forum!
I hope you find this place a stress free environment, because we all understand the pain you suffer.

Mate, you sure have been cut up a few times. You actually sound like an AFL footballer who has had to be reconstructed on a regular basis.
Have you been to a pain clinic before?
If not, you should ask your GP for a referral to the nearest 'Mulit-disciplinary Pain Clinic", because they will be able to teach you how to effectively self-manage your pain condition.

Brad, we are currently having some forum difficulties, so please bear with us until we have them fixed, but by all means take part in any discussions that are running, or start your own.

Peter

Hiya Brad, 🙂

I've only been a member for a few months still this place has helped me more than anywhere else I've looked for support or direction during the past 3 years. Clever decision on your part to venture in and feed from the wonderful knowledge the peeps on this site share so freely.

Great to meet you Brad.
🙂 Di

Welcome Brad,

You have certainly had a rough time! I hope that we can be a support for you. When the rest of our threads are returned, you may find some interesting reading too.

Peter's suggestion of a pain clinic is excellent. The only problem is that there are often long waiting lists. If it is possible you may be able to see a private pain specialist who will refer you to the rest of the people you would normally see in a pain clinic. However, the multi-disciplinary pain clinic is probably the best shot. Maybe have a chat with your GP.

All the best,

Mary

:woohoo: Hi, my name is Terry and my husband is Ray

In 1988 we were involved in a MVA which resulted in for me Reflex Sympathetic Dystrophy and Post Traumatic Stress Disorder. Ray was diagnosed later and told his was CRPS and Post Traumatic Stress Disorder.

We have been through Pain Clinics, Specialists and Doctors.

Just haying hello and checking out the website.

Hi Terry and welcome,

As you have no doubt read, we are in a bit of a mess at the moment. Only a small fraction of the threads available for you to read are here at present as we have had a crash following a software update. We expect that things will return to normal sometime next week.

You both sound as though you have had a terrible time for over 20 years now. It's hard when one person in the family has chronic pain, but it must surely be really difficult with you both suffering. I hope that we can somehow be of help and support to you.

Mary

hi my name is Tom and I am a 22 year old chef.I am still working but have severe loss of cartilage in both, but mainly left knee and continuing lower back problems due to having 4 herniated discs a few years back. I am prescribed oxycontin and endone.I also take panadol osteo, krill/fish oil and multivitamins.I have been on these meds for approx. 6 months.I am on a waiting list of 12-18 months to visit the orthopaedic unit at my local hospital.I am concerned about tolerance and the general effects of having these sort of problems at such a young age. I tend to have some mood problems due to the pain and also the general blood levels of the medication at times.I believe that despite all this I am doing a good job at work but it seems that that view isn't shared by all and that there is some sort of perception of me being a drug addict or unstable because of my moods.I do not abuse my medications and do not have any other problems with drugs or alcohol.While I admit that I like going out and enjoying myself it isn't something that happens on a regular basis. I also lost my little cousin 2 weeks before christmas in 2011,from suicide, and still sometimes struggle with this.I've spoken to phone counsellors,when I needed someone to talk to, but I think I need advice from people with similar life experiences.I hope to learn as much as I can and be able to offer support to people,even though I am quite young, I have been dealing with chronic pain of some description for over 6 years.I dont really know what to do or say and I guess this might not be the best place to tell my life story, but Im just starting to become a bit frazzled about the whole thing.Any advice given will be greatly appreciated.Im not here for sympathy, I just need to understand whats going on a bit better.

Hi Tom,

Welcome to the forum. Sorry to hear that you started your chronic pain (CP) journey so young. You will find as you meet more people on the forum that mood levels are something a lot of us struggle with...who wouldn't really trying to cope with living with daily pain plus the pain medications can also have side effects of depression and anxiety. It also makes it harder that a lot of the 'normal, healthy' people around us have no idea what it's like living with CP so they don't know how to be supportive. That's why a forum of like minded people is of such value.

I'm sorry to hear about your cousin too; that would be a tough one to process emotionally.

2 books to help explain what's happening to your body having CP and ways to help self manage it are "Manage your pain" and "Explain pain". Also, at the top of this webpage is a resources tab with a drop down menu saying pain self management or something similar. When you go to this page, there are a whole lot of downloadable helpful booklets about living with CP.

We also recommend doing a multidisciplinary pain management course if you can. You can Google pain management programs, ask your GP or ring your hospital to ask if there are any near you. I have also found a pain psychologist invaluable help. Usually there is a pain physician or specialist at these clinics too as well as the psychologist who can help with your medication. A physio is also usually part of the team.

All the best Tom and again, welcome.

Fee

Welcome Terry and Ray,

Sorry that you got to check out our website when we've just had a few problems with a new software upgrade. Hopefully all will be restored soon and I hope you can stick around. I would love to hear of your experience of living with CP for so long and, as you have already done pain management, your experience and things you have learned along the way. I'm sure between the two of you, you must be a wealth of wisdom.

I can't imagine how difficult it must have been for you at times with you both having CP. Did you find it also helped at times living with someone who understood?

Welcome,
Fee

Welcome Tom,
It seems at the moment you have alot going on, so I hope that reading the information at this web site and chatting with the supportive, informitive group of CP effected people here will help some. Just being able to realise that there are others going through the same things is a huge relief, to remove some of that isolation and loneliness that comes with CP.
I hope you find a smile today :cheer:
Wendles

Hi mate I lost my cousin last year although I haven't seen him in many years it sent me crazy knowing how he was lost to us. I absolutely hate Taking medication and I'm on a bucket load some for nerve damage and general pain 13 all up . And when there working well I feel like I shouldn't be taking them, as I have been told time and time again you wouldn't tell a diabetic to stop medication or a heart patient to stop . We are on medication for a problem .I have 3 herniated disc one ruptured a little . All lower back , both knees are bone on bone and cane left shoulder Doesn't hurt much it has 4 screws in it . All up I had 6 knee surgeries 2 shoulder surgeries 15 needles in back with nerve burning . I'm 40 now and should be at work it all started at 25 onwards . It sucks big time just rember your not alone bud .I Guess what I'm saying and it's hard to keep hope up . I try to say to my self one day it will get better. :cheer:

Hi Braddo,

I fought taking heavy duty pain medication for a long time, but all that happened is that my pain got worse and worse over time and I ended up not being able to do much more than sit in my recliner all day and watch tv while I was engulfed in this pain. Couldn't sleep at night from the pain either so there was no respite and I just got more and more depressed and exhausted.

If you fight even the medication that works for you, then it can't give you the respite from your pain that you need to get the strength to cope with living with CP. One of the biggest lessons I learned at pain management was to stop fighting my pain and being so angry at it...because this, in turn, makes our stress levels and our pain worse. Our body uses up so much energy just coping with CP; fighting about everything (including medication that helps you) only takes up even more energy and our bodies just can't cope with all of that and end up exhausted and extra depressed.

Hoping that you can put down your sword for a few days until you start your pain management course and give yourself a rest from the fighting.

Hugs,
Fee

Thank you Mary and Fee for your welcomes 🙂

In answer yes it has helped living with someone who can understand the pain that we both are living with.

Especially since it is a very misunderstood condition. We have had long trials with Doctors and various people who do not understand what we are going through. Sometimes we have found that the other one can get through to people who cannot understand not always but sometimes.

I have attended two different pain clinics both very good both very different. One was in 1994, so the understanding of RSD was very different. The second pain clinic we are just at the tail end of. The pain clinic was good for me but absolutely hopeless with my husband. Only one member of the clinic was able to assist with both of us and that was the Physchologist.

The very sad state of affairs with this pain clinic is that there is now no Drs attending the new patients.

We are currently adapting again to try and find a specialist who can and will help us.

It is a long and hard road. A person's pain is a very personal issue and I have found that most professionals have no true understanding.

The statement that you have to live with it even though correct is atrocious and very debilitating. It is much more appropriate to be told that we need to learn to manage the pain and our lives.

When there is more than a paragraph in medical texts about a lot of these problems we may see better attitudes.

Terry

Thank you for sharing you and your husband's journey, Terry.

I thought your words: "The statement that you have to live with it even though correct is atrocious and very debilitating. It is much more appropriate to be told that we need to learn to manage the pain and our lives." was so well put.

I had an "ahha" moment at my doctor's yesterday. I had been upfront with him about how putting psychological connotations on the weird reactions to medications that people with CP have because of central nervous system sensitization really adds to the stress of suffering from CP. It was a 'break thru' visit I felt cos he really listened and I felt 'heard' which is so often not the case with CP. What I also realised is that doctor's terminology (which they no doubt learn in med school) is a very poor communicator....what he apparently had been trying to say to me is that we are holistic beings with body, mind and spirit; what I heard instead was I thought he was saying it was all in my head up til that point.

I also asked him about some relaxation treatment and that none had been offered to me so far, but he said with the pain levels I had been in til recently going on Norspan patches, that I would have been "resistant" to relaxation therapy up til now. Usually, I would not have asked what he meant by that and taken it onboard that I had been doing something wrong as in the word "resistant" has connotations of being actively opposed to something. However, with a new found voice I asked what did he mean by that and he explained that he thought my body has been in too high pain levels to be conducive to relaxation therapy. That was my real ahha moment cos I realised that I interpreted his terminology in "people speak" and instead he was talking in "doctor speak" which seems to be a whole other language disguised as English! And seeing as with language we draw on our own interpretation of the meaning of a word through our own experience, I have many times come away with a misinterpretation, which I would have done yesterday ordinarily and taken onboard that he was saying it was my fault and I had been resisting relaxation.

This experience and your comment made me realise that there is a real need for a 'bridging' of the huge divide between doctor/patient communication.

Awareness is one thing however...not sure how that's ever going to change. Its almost like the whole medical profession needs a giant tune, service and overhaul!! It probably needs to be done by someone from without, but the wanting to change needs to come from within the medical profession....hmmmm...

Sorry to hear that your latest pain clinic experience was such a mixed bag for you and your husband. It seems pain clinics vary enormously plus the public ones seem terribly understaffed and underfunded.

Fee