Winning the battle but loosing the war

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4 years 5 months ago #20429 by Cianna
Hi,
Im a 31 year old mother of 2 boys aged 12 and 8. When my youngest was born over 8 years ago now the midwife tripped on the epidural while it was in my back, managing to partly tear the S1 right nerve ending. Since this discs around the injury have begun to deteriorate as a result of my altered abilities and etc.

At first like most people who suffer a sudden injury I became depressed, but after 3 years of fighting for help I found a wonderful pain management specialist in Sydney who managed to stabilize the pain enough for me to be able to function in day to day life. All be it not as well as I once did but at a level I was happy with.

Unfortunately due to rises in living costs and my inability to work as I once did, we had to leave Sydney for a more affordable area in rural Queensland. This year my injury has begun to cause me more pain as the Tramadol I was taking to suppress the pain seems to have become less effective. Ive suffered far more flare ups then every and spent more days stuck in bed then I care for. Ive wound up in hospital several times, where all they do is drug you and send you home again. Ive been to a very good physio who i am very happy with, but she can only do so much for me. After a 6 month wait I finally got in to see a pain specialist 1 hr away from us, this is a private specialist as our closest public clinic is well over 3hrs drive away, a trip I couldn't take right now even on a good day. I was told I have roughly 10 years before I loose the ability to walk at all based on the rate of deterioration of my discs. The reason for the pain is my discs are collapsing onto nerves that where not previously effected. I was put on a pain suppressant generally used as an anti depressant but has been very effective in Fibromyalga patients and recent studies show it works well as a nerve pain suppressant.

After almost a month on this medication it hasnt helped much, I went back to my GP who was instructed to increase the dosage and start me on Lyrica however my GP is refusing to follow the pain specialists instructions. I can not afford the $200 a visit every few weeks to get the repeats on these medications and being in a rural community there is currently only the 1 GP available to us.

For my families sake I need to get this pain under control again, they need me mobile, even if it is only in short bursts. As it stands Im barely managing to stand or sit for 30 mins at a time. To make matters worse, spending so much time in bed is leading to mood changes and I really do not wont to wind up depressed again.

Im not sure how to tackle this current catch 22 situation. Is there some way to get my GP to understand me or the specialists instructions and why he has taken such an approach? I do plan to contact the Specialist Monday and ask he contact the GP via phone with hope this will help. If it doesn't though I'm lost for ideas. Feeling like I not only have to battle for control over the pain but now fight the medical system again to get the help I need. oth the specialist and GP are private as there are not bulk billing Doctors where we live.

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4 years 5 months ago #20433 by Peter
Replied by Peter on topic Winning the battle but loosing the war
Hi Cianna,

Welcome to the CPA forum.

Unfortunately we chronic pain sufferers have to endure these problems with the medical profession on a regular basis. And you have pretty much answered your own question. Really, the only thing you can do at this point in time, is to get on to your pain specialist and ask them to speak to the GP, so that they can explain why you are on these drugs and to get them to continue with the regime.
This sort of scenario is improving. It use to happen a lot, but is slowly getting better over the past few years.

I can't take Cymbalta, but do take the Lyrica. I am sensitive to drugs, so I only take 75 mg at night and no more during the day. Lyrica works very well with me. It removes a lot of the spinal pain that use to keep me housebound, but not anymore. I found it easier to start on the 25mg capsules and slowly build up the dose to where it worked the best, instead of taking the 75mg at night and 75mg in the morning, which I think is the standard dose for beginners. That is way too much for me and I get sick if I take that much.

if you do have any problems taking this drug, ask your doctor for a script for the 25mg capsules so you can drop the dose down and titrate it up slowly.

Really hope you have some better luck next week. Please keep in touch and let us know how you get on.


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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4 years 5 months ago - 4 years 5 months ago #20439 by Mary
Replied by Mary on topic Winning the battle but loosing the war
Hi Cianna,

I am wondering who told you that you would not be able to walk in 10 years. Was it your current GP? Also, did he give you a reason why he won't follow the Pain Specialist's instructions? This must be so awful for you.

Firstly, I am not a doctor, but before you get too worried about the 10 year thing, try as hard as you can to get a second opinion. I have (and I know others) who have discs that look terrible on an X-ray but all of us are still walking. I have spinal stenosis as well, so my walking is limited, but I can still go around the block at a reasonable pace and that means I can walk around the house quite normally. I do have pain every day but chronic pain is a sensitisation of the nervous system and it is a beast, but unless it is CRPS and it is in someone's foot, it does not normally prevent people from walking. However as I said I am not a doctor, but if only one person has told you that you will not be able to walk in 10 years, then I think it would be worth getting another opinion.

I concur with all Peter has said about Lyrica. He is so right when he says that 75mg is too much to start with. That is the normal starting dose however and lots of people find this fine. i have been taking Lyrica for some years and I found 75mg difficult to start with but I persevered because it was helping. I don't think that the 25mg capsules were even available in Australia at the time or I would have gone back to them at the start. I wasn't too bad, just a bit more spaced out than I wanted during the day. It was ok at night. It did pass however.

I would agree with both you and Peter that your only option here is to ring the Pain Specialist and see if he will call your GP.

All the best for next week.

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
Last edit: 4 years 5 months ago by Mary.
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4 years 5 months ago #20440 by grappers
Replied by grappers on topic Winning the battle but loosing the war
Hi Cianna,
I would definately get your pain specialist to have a talk to your GP, in theory what is supposed to happen is you see your specialist which you have done, they outlay a management plan for your GP to follow through on, which yours is not willing to do, I wonder if you can make a complaint to the medical board if he doesn't listen to your pain specialist, travelling 3hrs each way is not an option just to get a script filled, one way you may be able to get around that, that is if your chemist agrees. We use to get our prescriptions pre-packed for a fortnight by the chemist, all scripts stayed at the chemist, when they were running low they would ring the treating doctors who would either fax through or post a renewal script direct to the chemist, this is providing most had repeats, that way it limited the need to see a doctor for scripts, which would limit your visits to the specialist just for scripts, they do charge to pre-pack your medication though, just a thought, you could discuss this with your chemist and your specialist.
Good luck hope you get it sorted soon

Don
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4 years 5 months ago #20450 by Cianna
Replied by Cianna on topic Winning the battle but loosing the war
Thank you for the advice and support.

It was my pain specialist told me 10 years Ill likely be in a wheelchair. He did say that I could stretch this to 15 or even 20 years by keeping my weight normal, continuing hydrotherapy and physio therapy. Part of the problem was it took me too long to get a proper diagnosis in the first place. It was 3 years before they stabilized my pain enough for me to be able to walk and get to physio, by which point all my muscles had deteriorated and had to be built up from scratch. Before pain relief I couldn't walk 50 metres at a time, now I can walk long enough to do a grocery shop without needing to lay down afterwards.

Fingers crossed my specialist will call my GP and we can get it all sorted. Up until recently I was also being prescribed 20x 5mg tablets every 3-5 months for when I had to travel or suffered a bad flare up. Because the specialist didn't mention this in his report they are refusing me those now too. Last night there was a storm nearby and I was literally writhing in pain in bed until I eventually passed out from out. Have had pressure point release done today and it has eased things a little but Im still struggling to move. Winter isn't my friend I seem to be far worse in the colder months then the warmer ones. Its extremely frustrating when I know there is pain relief that works for me but no Doctor seems to want to prescribe it because in their eyes I am too young and will become immune to its effects too early in life.

I don't expect to be totally free of pain, a mild pain I can handle on par with a headache but this is worse then labor pain! Finding that balance between what the Doctors are willing to prescribe and what works well enough to have some quality of life seems to be the hardest part of the fight.

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4 years 5 months ago #20452 by Mary
Replied by Mary on topic Winning the battle but loosing the war
Hi Cianna,

If it helps, I have been taking Lyrica for some years and you don't develop the tolerance to it the same as you do to some medications. It still seems to help about the same as it did in the beginning, although it's hard to tell because I also have a severe form of arthritis that complicates the issue of the neuropathic pain. However, I can function pretty well - basically normally but with careful pacing.

I hope that your pain specialist will speak with your GP for you.

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
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