Introduce Yourself Here.....

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9 months 3 weeks ago #28455 by TJB
Replied by TJB on topic Introduce Yourself Here.....
Hi, My name is Trish, I'm turning 60 later this year and have been living with pain for 11 years now after a crush injury that happened during surgery to remove a kidney. That was the most excruciating pain I've ever felt and I've had three kids and suffered migraines for over 30 years. I have been left with nerve damage to my sciatic nerve with numbness, pins and needles, burning and foot drop which caused a new set of pain and problems and still does.

I also have three different Autoimmune disorders, one that the doctors can't name so that just sits under the rheumatoid umbrella until/ if my symptoms get worse. All of these cause their own pain and awful fatigue.

I have taken Lyrica for the last 5 years after asking the Doctor if there was ANYTHING that could help but the side effects for me are getting too much and the usefulness has worn off so I have been very slowly weaning myself off these. Apart from that I just treat the pain with whatever I can when it's at it's most painful or I live with it and it gets me down and affects my mood.

I tend not to talk about the pain much even to my Dr so I don't think I've done myself any favours there as it doesn't seem to get taken seriously enough, I am thinking of trying to see a pain team but from what I can tell I might have a long time to wait as I don't have health insurance.

Today was an especially painful day and it got me down so here I am!

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9 months 3 weeks ago #28456 by Peter
Replied by Peter on topic Introduce Yourself Here.....
Hi Trish,

Welcome to the CPA Forum!

You absolutely should go see a multidisciplinary pain clinic. I would go see your GP now and get a referral to one at a public hospital. They are usually covered by Medicare also. There are private ones that are quite expensive, but the public hospital ones are very good. The only draw back is there will be a waiting list which could take some time to get in, but believe me if you go in with the right attitude then you will benefit from what you learn.

These clinics have a pain specialist, a physio and a clinical psych, all of whom have been also educated in how to handle chronic pain. They will teach you how to self manage your pain condition, by educating you about your brain and body, and how this all comes together as a pain condition.

Seriously, it is worth doing. Even if it costs you money, try to beg, borrow or steal the money to go. You'll only benefit from the experience. Don't go in looking for a cure, because that is not going to happen. This is all about you, how you perceive your pain condition and how you look at your future. You will be given exercises to do to strengthen your body, plus psych exercises to learn how to cope.

There is no miracle, but I have to say it was the best thing I ever did. I am now 60 and have lived with chronic pain for 57 years. I attended one of these clinics in 2006 which put me on a completely different road. I lived in constant fear over some parts of my pain. Other parts I never bothered with, because I had this pain all my life so didn't see it as a threat. Anyway, they helped me streamline and reduce my drug intake, but also do more to help myself cope in other ways. I am so much more engaged with society now than before, even though I am still on a disability pension. I volunteer a fair bit in my community and keep myself as busy as I can, which includes 2 trips to the gym each week.

Anyway, keep talking to us. Read as much as you can to educate yourself, but go get a referral to a pain clinic right away.



Peter

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)

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9 months 3 weeks ago #28458 by TJB
Replied by TJB on topic Introduce Yourself Here.....
Thank you Peter,
I am seeing my Dr next week and will definitely be telling her I want to be referred to a pain team.
I know there is no cure but do hope to get some help with dealing with the pain especially when it's at it's worst.
Again thanks for the reply and I hope by joining you all on here that it helps as well.

Trish

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9 months 3 weeks ago #28459 by fingers
Replied by fingers on topic Introduce Yourself Here.....
Hi all,

My name is Alex and I just found this board by accident and I am glad that I did (really bad pain day today).

I have been suffering from pain for around 12 years now, it first started with sporadic month long headaches and has now developed into constant pain every day. All my muscles in my head, neck, shoulders, back, pecks are in constant spasm which in turn cause horrible tension type headaches.

I am trying to do everything to relieve the pain but nothing seems to really work. I have done a 2 week course at a pain clinic where at the end they burnt the nerves in my c2, c3 but with no success. I see a physio every week, I go to a musculoskeletal doctor who injects my muscle spasms with local anaesthetic, I do Pilates every week and I take Mobic, paracetamol and Palmitoylethanolamide (PEA) every day. I have previously been on opioids (They put me on a 50mcg Fentanyl patch when I had no experience with opiates, lucky I didn't have any side effects) but now my GP and pain specialist treat me like an addict when I have never abused, been addicted, or really asked often to use these type of medications which is quite depressing. Whenever I am in extreme pain my GP just says oh that just your EDS you just have to deal with it.

I can't work (I am on the DSP) but I do volunteer as much as I can, I get fatigued really easily even though I feel my body is full or adrenaline, I can't think I am pretty much at my wits end.

Thanks for listening.

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9 months 3 weeks ago #28460 by LoubyLou
Replied by LoubyLou on topic Introduce Yourself Here.....
Hi,
I’m 44 and a busy Mum with 3 teenage boys, I also work but on reduced hour and duties because of PAIN. I’ve been suffering what the doctors call CRPS from nerve damage to my knee, I’ve been in chronic pain for the last 19 months. I had trauma to the knee and had surgery 13 months ago. I am so frustrated as the pain is now down on to my foot, I explained this to my doctor last week and that I struggle to put shoes on now, let alone pants, his response was “just put your shoe on, it’s not like your going to do any more damage, just forget about how the shoe makes it feel” Honestly some people have no idea that To put the shoe on is like someone stabbing a knife in to you foot and pouring boiling water over it. I am on Lyrica, Tepentadol SR and Tepentadol ER which on a bad day leaves me groggy. I am also on my second trial of Calcitonin injections, just wandering has anyone had any luck with it as all I seem to get is nausea and feeling like I’ve been hit by a truck for 48hours?
I so need to be able to understand and cope with this as I’ve been told it could last a lifetime which is not what I had planned.
Thank you for reading

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9 months 3 weeks ago #28461 by LoubyLou
Replied by LoubyLou on topic Introduce Yourself Here.....

LoubyLou wrote: Hi,
I’m 44 and a busy Mum with 3 teenage boys, I also work but on reduced hour and duties because of PAIN. I’ve been suffering what the doctors call CRPS from nerve damage to my knee, I’ve been in chronic pain for the last 19 months. I had trauma to the knee and had surgery 13 months ago. I am so frustrated as the pain is now down on to my foot, I explained this to my doctor last week and that I struggle to put shoes on now, let alone pants, his response was “just put your shoe on, it’s not like your going to do any more damage, just forget about how the shoe makes it feel” Honestly some people have no idea that To put the shoe on is like someone stabbing a knife in to you foot and pouring boiling water over it. I am on Lyrica, Tepentadol SR and Tepentadol ER which on a bad day leaves me groggy. I am also on my second trial of Calcitonin injections, just wandering has anyone had any luck with it as all I seem to get is nausea and feeling like I’ve been hit by a truck for 48hours?
I so need to be able to understand and cope with this as I’ve been told it could last a lifetime which is not what I had planned.
Thank you for reading

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