Hi its my first visit to this site, and i was wondering if there is anyone out there with the same syptoms as me, and know what it is .

[mufos]

Hi, i have had severe chronic pain in my back for 3 years now, and the doctors still dont know whats causing my pain, there is nothing medicaly wrong with my spine, but the pain i get is so bad, i am on morphine tablets and liquid, and still in pain. my pain can cover all my back and my buttocks, my legs even hurt some times, the pain changes on a hourly basis, from bad to worse within minutes, and some times bad to a bit better, it can hurt my lower back my upper back it even hurts through my ribs,which makes it hard for me to raise my voice, or even to breathe deeply, travelling is so painful , the g force of braking or accelaration causes me extreme pain. Pain that i cant really describe, but i broke my foot once and it feels a bit like that, and the pain kind of radiates out, in waves, its so strange , and so so painful The only thing that seems to ease it is laying on my side with Morphine but even that can get painfull if i stay there too long. I dont know when its going to be bad or worse or even better, i have little control over it , i can move with ease even though i hurt. I have had xrays and scans , and nothing shows up as with blood test. My pain has taken my life from me, my daughter does a lot for me now, as i am in too much pain most of the time , I am living my life as best as i can , i try not to let it beat me, but i cry some times when it just gets to much, but i really try to do my best considering my pain. I am also on high dosage of anti depressents for my pain, and i think that helps my mental state too, i just want my life back , has anyone got any idea what is wrong with me . Many thanks

[Hidden]

Hello

Could be posture, contact your GP He may? make an appointment with a pysio and try that as that can be the problem I gather you are young, so changes happen that may not cause problems later.

Try posture

BOB

[mufos in reply to Hidden]

Hi , thanks for your response, my posture is very good, i have seen a physo and many other profesionals, still no answers, and i am 51, and have been in pain for over 3 years

[hamble99b]

Hi mufos, has anyone suggested fibromyalgia? do you see a rheumatologist? physio?

just a few ideas.

[mufos in reply to hamble99b]

Hi , thanks for our response , at the start that was mentioned, but its not, i have seen a rheumatologest, and physo, and many other treatments, the still cant find anything wrong with my spine. but my cronic pain continues . regards Mufos

[Poppy_Ann]

Hi Mufos, i have had severe back pain after a accident in the army and every time i go for a review and a new MRI i get told a different story from there is nothing wrong that they can see to your back is broke in three places so just because a doctor says they can see no reason for the pain it does not mean there is nothing wrong with it, when i was in the army they did a think called manipulation under anaesthetic where they give you a general anaesthetic and then move your body about and see how you react to the movements with me when they tried to manipulate my back i lashed out and ended up knocking out the doctor by hitting him with my foot straight to his head when he came round the following day he told me that even though they can see nothing wrong on either X rays or on a MRI but they know there is something as if there was no real reason and it had only been in my head that i would not have reacted the way i did as i was starting to believe it was all in my head, over the years my back has got worse as the years have passed now i can hardly stand up most of the time and i can only walk up to 20 yds before i need to lean on something but like most people these days trying to get help via the social system is almost impossible i just get told that there is no way to measure pain so they can not say how disabled you are for a report and unless you have medical evidence that they do not want to hear from you, all you can do is try and get on with your life and ignore the pain, most people have no idea how bad a back can be my ex wife told me after an accident that damaged her back that it is worse than giving birth at least when giving birth you know it is going to stop in a couple of hrs but with her back that it just goes on and on with no let up she added that she had no idea whet i was going through until she damaged her's.

good luck with finding something to remove the pain over the years i have tried just about everything going and it is now over 30 years since i damaged mine.

regards

Poppy Ann

[mufos in reply to Poppy_Ann]

so sorry to hear about your 30 years of pain, and thanks for your response, i still am surching for an answer, but my doctors says to say its firobromyalgra. Apart from that she still cant find the root to my pain , along with the 4 other Gps i have seen, and the pain clinic.thinking of you, mufos

[Jamie186 in reply to Poppy_Ann]

Hi PoppyAnne As a long time back pain sufferer, I am really sorry for you and all my sympathy goes out to you, but as the old saying goes you cant spend sympathy I cant imagine what it must be like having constant pain, and being told there's no obvious cause and nothing we can do, just keep taking the pills.

At last after 5 years with NHS for hip, I went privately, within 5 weeks X-Rays, tests , MRI scan. the cause has been Identified nothing to do with hips, but back problem, having operation next month (at my expense) but hopefully pain will be gone. I,m so sorry the answer to your problem is not so simply. I

have my fingers arms hands and after the op my legs crossed for you

My best wishes

Jamie

[Poppy_Ann in reply to Jamie186]

Thanks Jamie, i am quite use to the way the army and the DSS treat people if you do not answer the exact way they want then don't expect to get any help. now i just expect that they will find any excuse to not have to pay people or to pay for the NHS to help people, this country is slowly becoming the same as the USA if you are willing to steel from others then you will be in the 1% that has 95% of the wealth if not then you will be in the 99% that has 5%of the total wealth. I can see a time that they change the law so if you are not working and paying tax then you will lose the right to vote and slowly people who either cannot find a job or are to disabled to work will receive nothing. it is time that the majority of people in uk ran the country not the 1% of top earners who run it as it is now.

regards Poppy Ann.

[Jamie186 in reply to Poppy_Ann]

Hi Poppy-Ann Thanks for your swift response, I don't think we should talk too much, as I think our political views are very much the same. I was brought up in the Rhondda , which was a hot bed of socialism and my Dad was a miner for 25 years. who died a terrible death caused by dust in his lungs, until that time I had a very successful business, and money was no problem. I was a founder member of the Jamie, self preservation society, but since Dad died and all the events you described, my socialist roots have returned, and I can see the damage being caused to our society, the NHS and all the other caring agencies, all because of a few benefit scroungers being used to tar all people who genuinely need help with the same brush. The main problem with our country is it is full of apathetic voter's who are not prepared to stand up for their rights.

Right Poppy-Ann I'd better get off my soap box and say by by.

My best wishes

Jamie

[Bananas5]

Hello mufos,

There can be many reasons people suffer CP but there are also many who appear to have no reasons to siffer as they do. Sometimes it can go way back to a long forgotten childhood injury. For most adults the injury has long since healed but the nerves have gust forgotten to swutch off.

You said toy are having morphine so the GP is taking toyu pain seriously. That;s a positive start. If this alone doesn't help, and it often won't, their are many drugs and alternative therapues which can work together.

Can you get a referal to a Pain Management Clinic? They have the knowledge to gelp you and in our experience - none better.

Here they will discuss all your symptibs abd ofer a cocktail of support, druhs and alternatives. One of the first things you must learn is how to 'pace' tourself. Learn that you can never afain live your life as you used to. Once you can accept that you can move on. Learning to stop doing something before the pain licks in. Prevention is always easier than cure.

There is no doubt it will be hard but believe me keep an open mind. Tens machines can be helpful as can acupunctire and others will talk of alternatives to drugs they find helps. Some drugs can be used for their side effects. Like Amitriptyline whoes main use is anto depressant but also as a muscle relaxant. A low dose is beneficial.

Realise what tiy can and can't do is a great start to living with CP even agter some years. Push tourself too hard and your body will react in the only way it kows how to protect itself. Pain and possible flair up.

Sorry if this is a bit long and badlt spelt - I get a bit carried away!

And never be alone - we are all here to support and help each other where we can.

Good Luck

Pat x

[mufos in reply to Bananas5]

Hi i have been to pain managenent clinics, and have tried many drugs, but still no wonder drug and no conclusion as to why i am in so much pain , i have been to pain meetings and seen a srink, to help me deal with my pain. so i just carry on with my Morphine and my pain. and thanks for your support , Mufos

[CWG2210]

I concur with Paton, a cocktail of drugs, taking into account the effects/bad effects has helped me lots. Amitriptyline when it was first mentioned to me made me cringe as I had heard of their use as an antidepressant BUT I AM NOT DEPRESSED, go with it as they do help especially sleep but watch side effects the next morning re driving; the TV moving around the room was not a good start to the day!!! Didn't drive that day!

Sleep they say is natures healer. The addition of Pregabalin (mainly used for epileptics which I am not!!!) with a low dose of morphine at night with codiene when needed during the day allow me to rest easy at night. The pain clinic is essential as without their input, my own gp, who is exceptionally supportive and sympathetic to my needs would not have necessarily introduced pregabalin as in my liquid form (can't take capsules) is very expensive.

Good luck and don't ever give up, MRIs, x-rays, lumbar punctures and blood tests have not showed anything to explain my symptoms, an electricity conductivity test is being carried out soon! But, the Pain Clinic and my own exceptional GP are helping me get back to a standard of living that is not what it used to be but 1000% better then what it has been over the past 4\5 years!

Let us know if you manage to get into a Pain Clinic and remember you are not alone!!!

[mufos in reply to CWG2210]

Hi , I am so pleased that your standered of living had muched improved. But i have been ther and done that and had many other treatments, and tried many cocktail of drugs including all the ones you have mentioned. please can u tell me what is electricity conductivity test, and how would u go about getting one , i have never hurd of it , but it gives me hope, some thing else they can try, as my pain just carries on getting worse and worse almost all of the time now, and thats on Morphine!! regards maria

[CWG2210 in reply to mufos]

The conductivity tests are done on the arms/hands to test for possible damage to the nerves in and around the carpel tunnel. Electrodes are place on a finger and at various places on the arms, my partner had them and it diagnosed carpel tunnel for which she had a small operation. My doc can't understand why my neurologist didn't check for this last time to try to account for some of my left hand side stroke like symptoms! So having a chat on Sunday to neurologist at local hospital

[mufos in reply to CWG2210]

Hi thanks for ypur quick response, but my pain is mainly in my back, most of the time, do they test for possible damage to the nerves in the spine. regards Mufos

[lotsoissues in reply to mufos]

If it’s possibly inflammatory pain it may not even show up on scans

[Kat3]

Hi Mufos,

whether or not your scans show anything concrete, your pain is physical and real. If you don't think your doctors are helping enough, then ask to see a new doctor. You may have already tried a pain clinic, but if not, make this your first stop. Perhaps they can get you into a pain management programme. You may need to try out some different combinations of drugs. And yes, pacing is really important. Though if you don't know what makes the pain worse or better, this may be difficult! At least you know lying down helps, so try lying down throughout the day, with frequent breaks. Set a stopwatch to see how long you have to lie down, before it starts to hurt and then set a timer for a little bit before this, so you can move before it starts to hurt. There may be some alternative therapies that can help: acupuncture (including electro-acupuncture - they have at some pain clinics), cranio-sacral therapy, Tens machine, osteopathy, massage. There are also specialist pain physics – one of these may be able to help you, and will also be able to give advice on pacing.

Good luck!

Kat

[mufos in reply to Kat3]

Hi, thanks for your response, i have seen up to 4 doctors so far, and yes i have been on a pain management programe, and have seen a physo, and tried other treatments , including all the ones you have mentioned. I will try your advice about laying down and using a stop watch , but it varies anyway , depending on how bad i am at the time. Thanks for your support Mufos

[aleckelly]

Have u had an ultrasound or mri?

[mufos in reply to aleckelly]

Hi , yes i have had both, and seen phyiso, and tried many other things, and all sorts of combinations of drugs, but still no answeres. Thanks for tour support , Mufos

[Dammy]

Hi Mufos

Everyone who reads your story will be thinking how very sorry they feel for you. All of us have been in pain for ages and know how it gets to you.

It does sound bit like fibro-myalgia because that effects everywhere and it can be extreme. Have you been to any rheumatology people at all? The other thing is that your GP should be sending you to a pain clinic; also it would be a good idea to see a senior physio if your GP could refer you urgently. The pain clinic lists are often rather long, but access to physios is usually quicker. Could you afford to go to one privately?

Sorry I can't tell you what's causing all the pain but I"ll be hoping to hear that you've got some help somehow. All the very best

Dammy

[mufos in reply to Dammy]

Hi, yes indeed, i have been to both mentioned and many other treatment have been tried, still no cure and no answers, they cant find nothing wrong with my spine, but the pain continues. Thanks for your conccern. Mufos

[Dammy in reply to mufos]

Hi mufos

Have you tried either of the websites:- "crowd med" or "find zebra"? (for identifying difficult to identify diseases).

All the very best Dammy

[johnsmith]

X-rays ans scans do not show up muscle spasms. Doctors are not trained to recognise muscle spasms and their pain causing mechanisms. A doctor will be only too happy to prescribe a pain killer and would not know how to stretch out a muscle which has gone into spasm.

A physio on the NHS would be very happy to prescribe exercises on a one size fits all with no effective instruction on how to do a muscular exercise in an efficient manner. A sports physio would treats footballers would be far effective.

I have treatment from a McTimony chiropractor which have helps me with my pain. The McTimony chiropractor I get on the NHS and I have a treatment about every six weeks. This will not cure the problem I have, but it helps keep it under control and at a lower level than what it would be without the chiropractor treatment..

I have regular Alexander Technique lessons which help my body understand how my muscular behaviour causes my pain and enables me to help do something about it.

Muscle in spasm will cut off the blood supply to the muscle. Because there is reduced blood supply though the muscle muscle waste products can accumulate causing discomfort.

It is easy to have surface muscles which look relaxed while the muscles below the surface can be over contracted.

Hope this helps.

[mufos in reply to johnsmith]

Hi , thanks for your response, and pleased that you have found somethiong that helps you, can you please tell me about Alexander techniques, and how you know what you have, that causes your pain. Many thanks for your concern. Mufos

[johnsmith in reply to mufos]

Hi Mufos

I have been doing Alexander Technique for 35 years. I have also been doing Mindfulness for 35 years. Meditation also for about 35 years. As part of my HNC Applied Physics endorsements I studied feedback loops as a unit of its own. I have also taught T'ai Chi and have a good knowledge of spinal reflexes.

I got hit by a ten tonne double decker bus in 1991 and have had pain and discomfort since. I have had several MRI scans which highlight a problem. The problem creates a feedback loop which when taken up by the muscles generate pain. By interfering with the feedback loop and inhibiting muscular action I am able to keep the pain at a low level. This requires a lot of mental effort.

What I have cannot be cured. All I can do is modify the muscular actions that the injury I have causes.

One of the oldest treatments is laying on of the hands. This when used by a practitioner who knows what they are doing is very beneficial. Most doctors and Medical Scientific reports have dismissed this as a viable treatment because they do not comprehend what sensitive hands can do. They fail to understand just as there is an IQ factor determining those who can do academic studies there is an IQ which determines how well someone can use there hands for healing purposes.

There was a medical trial recently which compared physiotherapy against Alexander Technique using STAT registered Alexander Teachers. The results are still unpublished. Knowing some of the Alexander Teachers involved in the trial I was able to get some of the unpublished results. Before the trial started measurements were taken of the propioceptor response of the patients. It was found that the propioceptor response of the patients treated by the Alexander Teachers improved. There was no improvement in the propioceptor response of the patients of the physiotherapists.

The propioceptors feed into muscle control.

proprioception

A sense or perception, usually at a subconscious level, of the movements and position of the body and especially its limbs, independent of vision; this sense is gained primarily from input from sensory nerve terminals in muscles and tendons (muscle spindles) and the fibrous capsule of joints combined with input from the vestibular apparatus.

Alexander techniques depend on the usage of the Alexander Teacher's body and the good usage in the body control is picked up by the patient who incorporates a better muscle control into their own usage. To comprehend Alexander Techniques you need to visit an Alexander Teacher preferably one who has at least ten years of Teaching behind them.

[mufos in reply to johnsmith]

Many thanks, i have now found a local teacher and am considering going, i will give her a ring, and have a chat about my condition, and how she can help me improve my pain. regards Mufos

[katieoxo60]

Hello Mufus, welcome. I would try some of the suggestions given. Pain is a vicious circle, muscle and nerve pain does not always show up on tests. Multi treatment is sometimes the only way, i.e physio, painkillers, tens machines, massages and herbal options most treatments have to be ongoing for chronic pain. Good luck with finding a personal option that relieves the pain.

[mufos in reply to katieoxo60]

Hi thanks for your input, i do all of which you mention, and still no relief, i just wonder how much more this is going to test me, i have put up with more pain than i could ever inmagine, this is my life now.

[katieoxo60 in reply to mufos]

Sorry to hear your pain is really getting you down, there are stronger painkillers, even painkilling injections or heat pads. Another one some people use is whisky, but what happens when the effect wears off. You need some long term relief but where to find it after three years of suffering. you are right this is your life and the thought of long term pain is daunting, have you considered Hypnotherapy, I understand your feeling as I have had constant pain as a companion since 1990.Wish there was a straight forward answer , everybodies pain is perceived differently, take anything that reduces the pain. Thinking of you

[mikew]

Hi,

Sorry to hear of your pain but I guess that from your description of your symptoms I have the same but a less extreme case, mine was bought on by a van accident, the best thing I have found is heat treatment.

My wife purchased a back heat pad from LIDLS for about £15, that goes underneath your jumper and plugs into the mains, it heats up and I feel the warmth reduces the pain but does not remove all of it, but it helps greatly what a great wife. Chemical heat patches that are available from supermarkets and chemists are also good, but they only work on a small area.

Hot baths are also very good at reducing the pain but don't fall asleep as the waters cold when you wake up!!!!!

[teadrinker]

No, I'm afraid I don't know what's causing your pain. But I have been in the same situation of suffering from chronic pain for a long time without knowing what was causing it.

I believe that being in pain but being unable to attribute it to a specific medical condition or event such as an accident or illness is very frustrating & upsetting. It can also make you feel like you're fibbing - even though your pain is very real - but when all the tests come back negative it can make you feel a fraud.

Don't give up trying to find ways to make life better. You are right, there is no "wonder drug", it seems to take a mixture of things to get it to improve, drugs and / or other things. (for me it's been a bit of medication, botox injections, physiotherapy, exercise and heat, and i tried many other things along the way which didn't work).

I have seen 7 pain clinic doctors and finally got an answer to what was causing the pain and eventually they helped me work out how to deal with it. So maybe giving this another try could be option.

It's a complicated problem for all of us that takes a lot of time and effort to solve, and I really feel for you, but just want to offer some hope - life can get better.

[shuggy54]

hi mufo, i have 3 types of arthritis the worst being whole spine spondalosis, i was in constant pain even when i was on mst's 70mg twice a day untill my pain clinic put me on Fentanyl patches 75microgram's per hour, i have since gone from taking 350 tabs a week most of which were pain killers to 250 a week i have to say that the other tabs i am on are for other conditions and the strongest pain killers i take now are paracetamol, i have found the patches to be excellent with less side affects as the mst's, mst only has 8% morphine in them but the fentanyl patches have 10 times more.

i hope the above helps you with your pain controle untill you find out what your problem is good luck.

[lotsoissues]

I know how you feel. About seven years ago I developed back pain and it’s now been declared autoimmune. You may want to see good rheumatologist