Back pain - running out of ideas

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7 years 2 months ago #18560 by Keciaann
Back pain - running out of ideas was created by Keciaann
I am hoping that someone can offer some help. I have chronic back pain and have had it for about 12 years. The only time I haven't had it was when I was pregnant. But that's not really a practical cure!! In the last 3 months it has gotten worse. It used to just be my thoracic spine but now I also have lumbar, sacral and sacral iliac joint involvement. I see a physio on a weekly basis and that helps for a few days. I have tried panadeine forte, ibuprofen, meloxicam and voltaren tablets. None of it works when the pain is severe. Apparently i need to do pilates etc but my back hurts all the time and I am scared that it will "seize" up. I have recently tried an aqua class and am planning on doing more. But again am scared in case it makes things worse. I don't sleep well& am miserable a lot of the time. It is having a bigger impact onmy life all the time. It also affects my family as I am not always fun to be around. I get so depressed as no one can help. The only thing that works is valium but that isn't a long term solution. I have seen rheumatologists as well as GPs. But no one gets it. I think they see me as just wanting drugs. Whereas i want the pain to stop so that i can fix my back through the right exercise and start living my life again. Sorry to sound whingy but am struggling to cope. Would love to hear other people's thoughts.

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7 years 2 months ago - 7 years 2 months ago #18561 by Mary
Replied by Mary on topic Back pain - running out of ideas
Hi Keciaann,

Welcome to the forum. I am sorry that you are having so much trouble and worse still, that your doctors "don't get it". I had thought that we were making at least some progress in that area, but maybe not as much as I had hoped. I was at a conference last week but I fear we may have been preaching to the converted. However, there are many doctors out there who do understand; I guess it's finding them that is hard.

I am assuming that you have had all the usual tests and anything else other than a "bad back" has been ruled out. I can't give you medical advice but I can give you some hints based on years of experience with the same problem and from talking to many people who suffer as you do. Firstly, although you obviously need to move, sometimes with chronic pain, moving too much can be detrimental. It's really about moving without stirring things up. This might be very minimal to begin with. Your nervous system becomes sensitised with chronic pain and it perceives some things as a threat. Therefore going for a long hydro session or a pilates session can actually make you worse. If you can read the book "Explain Pain" by David Butler and "Lorimer Moseley" you will find that they explain this much better than I can. I use their principles and it works for me. There is a downloadable version here: www.noigroup.com/en/Product/EPBEII You can also get the hard back copy but it is more expensive. It is the best book that I know of for really explaining why you are in pain. It will help you overcome some of your fear too.

The very best thing that you can do is to attend a multidisciplinary pain clinic. I don't know where you live, but they are usually located in the major public hospitals and due to the lack of funding over many years, they have a long waiting list. Ask your doctor to refer you to one. This has been shown to be the very best way that we have right now to manage chronic pain. In the meanwhile, if you are not happy with your GP or Rheumatologist then ask around and see if you can find someone who does understand chronic pain.

The other thing is - please try hard to stop being afraid. Your back is unlikely to seize up. I was petrified of this for years and I know it made my pain worse. The person who helped me the most with fear was a psychologist who was experienced with chronic pain patients. This is almost a mandatory part of chronic pain treatment. It does not mean that there is anything wrong with you or that the pain is "all in your head", but a good psychologist who is experienced in pain management can make a world of difference. They have strategies to help you cope and to stop you being afraid. It was one of the best things I did.

The other option while you wait for a pain clinic would be a chronic condition or chronic pain self-managment course. There again, they are thin on the ground. If you want to PM me your location, I will see what I can find out for you in that regard. One of these courses also helped me enormously and I ended up teaching them myself.Also take a look at our "helpful links" section of the forum. There are some useful resources in there. There is also an online pain management course that is run by Macquarie University. We have had several people do this course and they have done very well. I am not sure whether or when they will be running the next course, but you could ask them.

I hope that this can get you started. Please stay in touch and let us know how you are going.

All the best,

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: 7 years 2 months ago by Mary.
The following user(s) said Thank You: gemini

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7 years 2 months ago #18761 by KylieAnn
Replied by KylieAnn on topic Back pain - running out of ideas
Hello,
I am in a similar situation to yourself, I have chronic low back pain, going on 9 years this year.
I had so much trouble trying to find the right GP, I now have a fantastic GP who only moved to town in feb of last year.
It took me many appointments to even be able to talk to her, she was very patient, in the beginning it was sent mostly in silence and with me shrugging my shoulders, I desperately wanted help, but am so shy and unsure if I could trust her that my way of coping was to remain silent until I built up trust with her.
We now laugh when I do shrug my shoulders as it is rare that I do it.
My GP is trying her best to help me to find an answer to my pain and to find a long term medication/treatment that will help me to live my life with relative minimal pain.
At the moment I'm struggling with pain sitting at approx 6/10 and I'm taking a lot of medication, which is not helping much.
I do not want to be taking ,education but for now I know if I do not take them, my pain will be even worse.

Just like yourself, I was scared, nervous about doing certain things, I've been told the hydro is amazing for any type of pain as you are weightless, by careful though with doing an aqua class though as you can over do things as like I said you are weightless whilst in the water and may be sore afterwards, this isn't always a bad thing, you may have used muscles that have not been working for a long time.

I hope things get better for you, please keep us updated with how you go.

Regards Kylie

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6 years 6 months ago - 6 years 6 months ago #20848 by nstore04
Replied by nstore04 on topic Back pain - running out of ideas
Hi,
I am new to this but just writing to offer what I have been through and what has helped me. Everybody is different, and I have found after many years of trial and error that what will work for some, will not work for others.
I am 28 years old, had ongoing lower back pain for around 4-5 years, finally had it scanned, had spondylolisthesis, bulging discs on a few levels and pars defect. Within 6 months of my first scan on it, I was operated on. Laminectomy and Fusion of L5/S1 in 2012.

I thought it was bad before this, it only got worse. It went from pain of worrying about what sort of occupation I would have to switch to(I was a Carpenter), and what sort of sports I'd have to give up……. to how long can I live with this pain!

It is an irreversible operation, and after living with that extreme pain for 2 years (no work, very little social life, became dependent on all types of medication) I am now 2 months post second fusion. At this stage, still in a fair bit of pain and due to them going through the front and back, I now have abdominal issues that have me unable to leave bed. I am still hopeful I will find an answer, but the future definitely worries me.

I have seen every profession I could afford, (Physio, Osteo, Chiro, Psychologist, Pain Management, Kinesiologist, massage therapy, dietician) they all have their own ideas and believe they can fix you. I now see one physio, and one massage therapist. You can't mix up treatments, as one can be undoing all the work of another.

Hope, Faith, and sharing your feelings with the right people, without sounding like a whinger, is was has helped me mentally. (If you are constantly complaining I know people would not want to visit so much).

I also look up, and watch many videos on people who have documented their stories, a lot of them who are no longer here, and you focus, and realise the things you still CAN do! There are always people worse, millions of them.

You have to be determined to beat it and sometimes the time limited you put on it need to be extended. I have had this pain for a while, I have watched friends go through cancer, or friends be off work for 12 months with injury, and still, I sit here with this ongoing debilitating pain. It is hard when you feel your body only healing something to a certain point.

I am now determined I need the rods out and thats what I will be discussing with my Dr. After so long, you learn your own body, nobody knows it like yourself, you can take on expert advice and opinions, but at the end of the day, you know your body. Sometimes you have to push for what you want. And be happy with your doctor, do not be intimidated. I had to change specialists between my surgeries because the first one did not want to know about it when I had problems, and I felt I could not tell him it had failed. You want to hear your doctor say he is going to fix you, and you have to have faith in him, only you can determine that.

Physically, I found, once my back had stabilised, stretching (hamstrings, gluteus, calves, hips, core exercises like planking, in the sun when possible), all of what I do is a routine where I have taken bits and pieces from each visit and profession I have seen. The pool is also excellent, I hate swimming, but I have had to learn to love it. (Waterproof headphones helped).
As far as medication goes, I would say at one point in my life, they saved me, but they do come with side effects which is what you have to weigh up. I am now going through the withdrawal stage to determine how well the second operation has worked, it sucks, but I am lucky in the sense that I have a roof over my head, no children or partner so I do not feel burdened by that. Although that support would be awesome, I would hate the fact that I could not provide or do the things I dreamed of with a girlfriend or family at this stage. I am also on centrelink so I am unable to do a lot of things for financial reasons.

Although I try to stay positive, I definitely have my down days, more than anyone would know. I recently started a diary and write my inner thoughts down there. I am finding that is helping. Keep looking until you find a doctor you are happy with, be proactive, it won't fix itself, and if you have to take medication, trial ones until you find the right one for you. It is an on-going learning process. If I did not have a fusion, I found this recently, I believe it would have helped me a lot, it's ..........Link Removed by moderator!................................... there are many testimonials and it is made up from a person who had back pain themselves. I'm sceptical of all these things but I emailed him, he was prompt to reply, and advised me which parts to not do with the fusion and to take it very easy. I believe it is definitely on the right track though.

Sorry, you try not to make your postings too long on these forums but they always end up going forever!
Last edit: 6 years 6 months ago by Peter.

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6 years 6 months ago #20849 by Peter
Replied by Peter on topic Back pain - running out of ideas
Hi nstore04,

Welcome to our forum.

You will notice that I have removed the link to that website you put in your post. If you looked at our rules, you would have noticed that you cannot post any information about alternative or mainstream clinical services on this forum, without the permission of the Board of Chronic Pain Australia. This is to not only protect our members from snake oil merchants, but to also protect our organisation from possible law suits.

Normally we simply delete the post and ban the person making the post, but you seem to be a genuine sufferer of CP and in need of support from us, and also an opportunity for you to engage with and support others. There is a lot we can all learn from each other.

So please talk some more. don't worry about the error, it's really no big deal. You just can't post that stuff on the forum.

Enjoy your stay and get involved in any of the other topics that interest you.

Regards,



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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6 years 6 months ago #20850 by Mary
Replied by Mary on topic Back pain - running out of ideas
Hi nstore04,

In addition to Peter's comments, I would like to add that the website shows no results of scientific studies that have been conducted that that in itself is a red flag. I realise that there are people there who swear that this 20 minute "treatment" has cured their pain. This is not the first time that I have read about these "cures" etc. and I tend to think that if they work so well, then why so so many people (millions) still continue to suffer from chronic pain.

Thank you for telling us your story - I think you will be a great support to people here. Your story sounds very familiar to mine, except that I did not have a second surgery. I will not be either, unless it is a case of life or death. I was told that subsequent spinal surgeries do not necessarily improve things, unless there is really good medical evidence that they are necessary. Spondylolisthes, bulging discs etc. are common findings in people's backs. Some people have these conditions with no pain at all.

I have no doubt that my surgery was successful, but somewhere during the healing process, the nervous system becomes sensitised (they don't really know exactly why yet) and you end up with chronic pain. The same thing can happen with knee replacements and they don't understand that yet either. The original pain that I had prior to surgery is fixed, but I have been left with a lot of neuropathic pain for which there is no cure, only management at this point in time.

Thanks again for telling us your story. I hope that you can get some relief really soon and manage to get out of bed.

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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