Where Do I Go Now????

Looking for some help and support from anyone who can help me. I am 28 and for the last three years over the counter medication has not been able to control the pain of my lower back ( I have had this for 13 years)

I have been trialed and tested on numerous pain medications yet nothing seems to be getting done to actually find out the route of the pain. I have been on in the last three years - gabapentin, pregablin, amitriptoline, codiene, dihydracodiene, zapain, codrydamol, list goes on and on. Right now I am on Tramadol , Matrifen Patches, Naproxen, methocarbamol and cymbalta currently taking a mixture of 22 tablets each day and a patch change every three. I am still in pain so much so I live on 2 - 4 hours sleep a night every night to the point I cannot function anymore. Last week I woke up with swelling in my wrists and GP(not mine) and Emergency doctors both said Ulnar Nerve causing this and could be stemming from my back problems. Every 4 weeks i visit my GP, he changes another of my tablets or strength and sends me on my way. I do see a pain specialist at our local health service which is a joke in the last two years I have seen him 3 times for a total of 5 minutes each. I have had cortisone injections and nerve blockers and was suppose to have these redone in December but now being told it could be January 2015 due to the waiting list!?!? I have seen bone specialist, chiropractors, Bowen Therapists, Physio 5 different ones, have had back braces, inserts in my shoe and nothing helps. no matter how much I shout nothing is being done. Can someone point me in the right direction as where to go, what to do next or who to contact? I am getting so down and depressed that I no longer wish to wake up in the morning because of the pain. Please Help!

16 Replies

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  • Hi, it sounds like you've really had a rough time, and still are. So sorry to hear that. You haven't mention bed an MRI. That was the first investigation they did to try and find the root of my back pain, which showed a slipped disc and nerve irritation. Eventually, after lots more pain and problems I had a discectomy which solved that particular pain. Can you ask your go for one, and try and get another pain specialist too?!

  • Sorry about typing. On phone. Should say 'mentioned', of course.

  • You sound like you are going through a living nightmare at the moment and many here will empathise with how you feel.

    It sounds like you really need some fresh ideas on pain management and a look at what is causing the pain. MRI seems a sensible route followed by the right physio and a new look at your medication. I have been where you are now with CRPS and have just really not wanted to face another day, however I am now on fewer meds than since I was diagnosed and managing my pain day by day. I still have bad days but not so many bad weeks. We did this by reducing one medication at a time till we found the ones that worked and increased those. I did under the strict control of pain clinic so it may be worth having that conversation.

    Hope you find some hope soon.

    nutty x

  • Thanks nutty and poozle, yea forgot to mention had MRI through ESP via physio about 2 years ago and said there was nothing that they could see. Reduction in medication is always an option for me and in the long term what I am aiming for, at 29 living like a recluse apart from going to work is unfortunately so depressing, I am lucky I have a great partner who helps with day to day activities and understands how difficult it is for me. I am convinced that this amount of medication is also having an impact on my mental health and emotional well being too but terrified to come off them especially the morphine when you hear all the horror stories, thanks again you two, to know I am not alone in a small step in the right direction. xxx

  • First of all Shelly, you are not on over the counter medications, you are on prescribed medications. OTC meds can be bought at the pharmacy, things like ibuprofen etc. You are on a lot of heavy duty meds for a condition that cannot be seen! Ask to be referred into a Pain Management Programme which incorporates exercise and cognitive behaviour therapy. These programmes typically last for three/four weeks of intensive therapy. You will meet others like yourself and med reduction can be discussed too.

  • omg poor you , I think you need to open your mouth more and show them your in pain , make more appointments and be a pain in the bum ( so to speak ) be assertive , perhaps different type of physo , the hydro pool is good relaxes too which helps , ive tried swimming even if you were to swim really slow with floats would help with your mind , I can hear you now I don't think so , that's what I said , but decided to give it a go , got refural from gp to paris (physical activity referral in stockport , they will do one in your area ) , so I got lots of help I have a trainer who talked to me and showed me all around the gym , he gave me his no so that I can call when I need to ,you can go to lots of gym s and pools in your area there is a small fee but I cant believe the change it has made to me , I chose to go at lunch time week days , ive made friends and do feel much better , as for the pain its still there but I find it goes round your system better because your moving around , I now feel much better in my mind it feels cleaner so helps me with pain management , I thought this was rubbish but had nothing to lose please try for a week or so you may be pleasantly surprized , good luck Debbie

  • Hi there, sounds like you've had a horrendous time of it with very little support. I would research spinal consultants (surgeons and orthopaedics) in your area, then get a referral to one. Is there a chance you could go privately, even if just to get seen, have an up to date MRI scan then a review? Personally I found Private better as it was quicker and they seem to have more time to spend. I had very little to show on my scans but had facet joint disease, it was only when he opened me up he could see how bad it was. Your pain clinic doesn't seem to be very effective, some are better than others and your GP just keeps changing your meds. I can't take morphine based drugs as they cause more pain! Many people don't know this and many professionals don't know this either. It's like pain you get the day after you've been running, muscle type pain. On the side effects of the drug it is down as hyperalgesia, so if any of your meds have this as a side effect it could be making the pain worse. I hope this helps and let us know how you get on.

  • That is quite a list and most of us with chronic pain have a similar one. I do know what it feels like to not want to wake up anymore. I don't have the same issue as you but I can tell you to keep researching your condition, seek out new doctors, alternative medicine, acupuncture, exercise, diet change, get something to help you sleep,our bodies restore while we sleep, try to stay distracted, the more I talk about and focus on my pain the worse it gets. Have you had an xray or ct scan or MRI done? Your not alone and giving up won't help,believe me I tried that too. Search for answers,demand them.

  • Hi shelly7, where do I go now is a good title as you seem to have been through most of the routes for pain treatment, and most standard drugs too. Think you need a new look at possible new options for pain control or diagnosis review, you may have to ruffle a few feathers and be assertive to get taken seriously, but no one can continue losing sleep due to pain,you must be exhausted some days which won't help reduce your pain, only make it feel worse. Best wishes to find a better pain relief soon

  • Hi Shelly, i am in the same boat as u , i am in bed writing this, but hope to get up soon, if things get better, i have a bad cold at the moment and headaches, and it has made my normal pains worse .

    I have taken all those meds you have mentioned, and been and done every thing, and still no Answers, Apart from, it may be Fibro. So what i have done, is, after reading, and asking questions, to people in pain like us, I have started taking Magnesium, as it is needed for the growth and function, of the bones, nerves, muscels, and any other part of the body. It is also good for Anxiety Fatigue Fibromyalagia, restless legs, Cholesterol, and increases emergy, but dont take if you have kidney problems , as they have trouble clearing Magnesium.

    Fish oil, helps reduce depresion, and keeps cells in the blood healthy.

    L Tyroisine is a non essential amino acid and playes an important role in the production of the neurotransmitter dopamin and norepinephrine in our brains and when you are in server paine you dopamine level is greatly reduced, and this is our bodys natural pain killer ,and with poor sleep your levels must be really low. It also improves almost every protine in the body, and improves memory and stress, and will make you feel more alert after sleep deprivation, but avoid if you have migraine or if you have hyperthroidism, over active throid, as it may increase your levels

    Zinc its immune enchancing, it helps heals wounds, regutates insuline , and improves blood cholesterol levels, and it may improve Throyroid hormone levels particlarly T3.

    And lastly Vitamine C, as it is a essential nutrient for human, and our body neither produces nor store Vitamine C , it contributes too the normal function of thr nervous system, and blood vessels, bones carlilage, also helps with stress tiredness and fatigue.

    It has given me a new hope, i feel that any thing is worth a try. and these alternitave medecations, just might be what we need, is it just that our bodies are so out of balance, and lacking in Magnesium, or we just need to get our levels of dopamine up, and our systems running back to normal, then we just might get to the bottom of our pain, i am 51 now but have been in pain now for 4 years. do your own reserch, see what you make of it, and if you do give it a try hunt around, as prices are all over the place. but do check with your GP, to make sure that they wont react with the meds you are on. I will be thinking of you and good luck, we all would love our lives back.

  • "Last week I woke up with swelling in my wrists and GP(not mine) and Emergency doctors both said Ulnar Nerve causing this and could be stemming from my back problems."

    Ask if you can see a chiropractor or osteopath on the NHS as per NICE guidelines - NICE clinical guideline 88 – Low back pain.

    Manual therapy1

    • Consider offering a course of manual therapy, including spinal

    manipulation, comprising up to a maximum of nine sessions over a period

    of up to 12 weeks.

    1.4

    Manual therapy

    The manual therapies reviewed were spinal manipulation

    (a low-amplitude, high-velocity movement at the limit of joint range

    that takes the joint beyond the passive range of movement), spinal

    mobilisation (joint movement within the normal range of motion)

    and massage (manual manipulation or mobilisation of soft tissues).

    Collectively these are all manual therapy. Mobilisation and

    massage are performed by a wide variety of practitioners.

    Manipulation can be performed by chiropractors and osteopaths, as

    well as by doctors and physiotherapists who have undergone

    specialist postgraduate training in manipulation.

    1.4.1

    Consider offering a course of manual therapy, including spinal

    manipulation, comprising up to a maximum of nine sessions over a

    period of up to 12 weeks.

  • Hi, I was sent to a pain management person in a clinic.It was suggested to me to try a ti-chi course . It is to help me starting to manage my pain. I have been going for five weeks now and it is started to make a little difference.The NHS pays for you to go for 20 weeks also you should give it a try it for six weeks as it takes time for your body to decide if it will work.The movements are so gentle and yet it makes you feel that your body has been worked in a gentle way.Another thing is water walking. To take it gently and gradually work up to be able to swim again.The thing with course is that they show you things you can to help your body to be less painful. Ask your DR. about it.I have a lot to be shown yet but i am trying.All the group has things wrong with them so your not alone with the pain you have.

    Hope this has helped you.God bless.

  • If you have had lower back pain for so long, and if it wasn't the result of an obvious injury, then you really need to be assessed by a rheumatologist to rule out spondyloarthritis. If by chance it is spondyloarthritis (ankylosing spondylitis or one of the other forms), then its not surprising straight pain meds don't deal with it well - spondy is an autoimmune inflammatory condition, and needs specific antiinflammatory treatment. If you want to find out a bit more about it, check out the nass.co.uk website, as there is some good information there about differentiating inflammatory back pain from mechanical back pain.

    Most back pain is better from gentle stretching and movement, and worse if you avoid moving, even if it might be hard to actually get started. Walking and swimming can be good, but don't do hard swimming - more like floating and gentle moving of your arms and legs in the water, or even just walking in the water.

  • Do you have Psoriasis? If so check out Psoriatic arthritis - it always get missed as the inflammatory markers always come up negative with it, but it can be treated with "biologicals". Google it and see if that is a suspicion. It presents with sacro iliac and finger pains initially and then spreads. Then there is Fibromyalgia or undiagnosed Hashimotos thyroiditis (not found with just TSH and T4 tests).

  • I'm in a very similar situation, just keep being told it's all about self management! You feel like you're just going round in circles. I'm waiting on being referred again to the chronic pain team and results from rheumy at the hospital.

  • Shelly7 Hi Firstly hang on in there Secondly try another doctor at the practise tell her or him just what you feel ,like you and so many others I over the past few years have been on and off various medications, now I am waiting for a Transdermal patch as I hope that this will be the one to work and help with my pain.

    The important thing is Shelly dont give up or in fight it I know that when the pain is there its not easy, we know just where you are coming from.

    I wish you all the best and hope that you do get a result and that the cause of your pain is identified and then the proper course of treatment can begin.

    We all wish you that Shelly.

    Sam.

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