So this is my first post. I suppose I should tell you why I am here. I have been suffering with back pain and sciatica for 10 months now. I've been passed here there and everywhere to different doctors and physios and had all the tests under the sun. And now as they can't establish the cause of the pain (which is excruciating) painkillers are thrown at me and everyone it seems has given up, leaving me still with this pain.
My life has seemed to just be over taken with this, I can't walk without crutches and although everyone says they feel sorry for me, I don't feel any support from them. Its almost like they think I'm putting it on or attention seeking and I should just get on with it. Unfortunately, it is not that easy, as am sure many of you probably understand.
I have now been put on a pain management programme and my physio is overseeing my care. However, this has left me confused, as the amount of doctors etc I have seen, they all seem to have different opinions and telling me to do different things!! One doctor even took my off all my painkillers altogether, making me life unbearable, while another disagree and told me to take them! So god knows where I stand and what the right thing to do is.
So I now turn to the support of you, and will hopefully find people with similar issues and are able to help me with some self help techniques or things that have helped you manage when times are tough.
Thank you so much for reading!
L
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Leelee16661
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Yeah I have had 2 MRIs and they can't give me a reason for my pain. I've had nerve conduction tests as well. They just keep saying oh it's just your nervesthat are damaged ( from what they think was a previous slipped disc). Just don't seem to be getting straight answers from anyone cause one said its inflamed nerves then another is saying it could be something further up my back causing the pain! You can't win!! Yeah taking tramdol and pregablin and diazepam at night to help me sleep ( cause that non existent!)
Sorry to go on but it's been very frustrating and getting to the end of my tether!!
At your age, and if it wasn't the result of a definite accident of some kind, ankylosing spondylitis (a type of inflammatory arthritis) should have been suspected and ruled out, and for that you need to be referred to a rheumatologist. AS typically hits people in their 20's and is quite treatable if you get onto it before it causes permanent damage (which luckily doesn't usually happen for 8-10 years or more.)
Well I can't remember doing anything specific to hurt it. Not heard about that inflammatory arthritis, definitely something I will look in to. The doctors just seem to have written me off, which is so annoying because the pain is unbelievable!!
Thanks for the reply though and I will definitely being doing some research!
Sorry to hear you are in such pain so young, well twenty years ago ago when I had the first bad bout of it all. I found the accupunture with ultrasound worked for me, but then I had it on the NHS, now you cant get it.
I don't have back pain but I had an awful experience with a GP recently who thought I was lying about pain and a drug seeker. Even sent me for an emergency psychiatrist appointment. I attend a pain clinic and my pain is very real. Sometimes you have to accept that some doctors are just eejits and a degree doesn't mean they are any good at their jobs. Some are better than others. I am 29 and have been in agony for over a year. My pain is nerve related and I would love a cure. Pain management is useful but if you have a feeling that there is something more to it, pay private and get some more opinions. Life is too short xx
I have chronic sciatica diagnosed by MRI and have tried a number of treatments:
Private chiropractor- rubbish and made pain worse!
NHS physio - again no idea and no help.
Osteopath - 6 sessions on NHS. Amazing helped loads at the time.
Private physio following car accident - has helped lots and although not pain free am MUCH improved and been able to reduce meds plus got more idea of pain triggers.
My point is that it very much depends on the skill of the practitioner as to how much help they provide. But worth trying to find something that works for you.
Did any doc give you a diagnosis ? Why can't you walk ? Have they done MRI or CT Scan? If you are in pain, what do they say it is from ? Maybe time to see orthopedic doc ?
No they haven't told me for sure what it is. One says inflamed nerve roots another says it's all in my brain and the nerve signals are misfiring. Yeah I've had scans etc and it was originally caused by a slipped disc but the pain just hasn't gone. I wish I could walk without the crutches but that just is unbearable. I get pain as soon as I move my leg. I definately do need to do my research and start asking them more questions and hopefully get some answers!
Hi you said you had an MRI did the do the whole of the spine ? You my have what they call a syrinx in the spine , this is a very rare illness ( look it up ) not many doctors have even heard about it !! It's called syringomyelia and has no cure but is very painful !! . I have this and it took a long time for them to find this , hope you get sorted soon . Linda
No Scan of just the bottom of my spine and my pelvis. Will definately be doing some research! Thanks! L xx
It is good that now you are been seen by a Pain Clinic.
One problem you could develop is future pain caused by the crutches. When we use them it can cause problems with your posture, although f that is what the suggest it is not my place to contradict. I use one or two walking sticks, when they are adjusted properly they give support and prevent pains in spine and shoulders. Yes you need support, no you do not need the support that restricts movement. You need to be able to keep and maintain your bodies flexibility. Also it is the weight of crutches that unsettled me
You seem to be in the right place for your condition and hopefully the sciatica will ease given time
At this time I have sciatica in both my left and right legs, my left is worse and it feels like someone is sticking needles into my thigh. This has been going on now for over a year now and I have tried my coping skill and managing my medications. So now I am seeing my GP in two weeks time.
That is no consolation to you, my condition. It only shows there may be no real thing they will do in the near future as that nerve is one of the longest in the body.
What I use is a V-TENS set up as a nerve block, Pain clinic will be able to show you how to set the machine up to give some form of relief. Sometimes I use a shower head and use an intense shower pattern on the affected area, that helps me, I do not know if you could find that of any benefit. Personally I would try and keep your leg moving through the pain as restricting movement can cause DVT.
Your GP or Pain Clinic may do a nerve continuity test as they try and find where the nerve is pinched I have not had this done for a long time and I do not know if they still do it or not. There are also scans that they may do also physio as you mentioned earlier
So that above is all I can suggest, the clinic will show you how to manage your medications and that can give you a chance of controlling the pain better.
Thank you for your reply, I am using lots of distraction techniques, particularly listening to my favourite music , you can't help but sing along! Seem to help a little! Definately trying to keep moving and my first aim is to get off these crutches.. Will keep you posted on that one!
You need to look at the complementary medical practitioners. You will find that Alexander Teachers, McTimony CHiropractors, yoga teachers could provide benefit.
Your problems could be due to faulty muscular behaviour. You can look at some of my other posts for descriptions of the reasons why.
One additional point is that if I have to do any significant walking if I use my walking stick I get lots of additional pain. Probably due to posture. I now use a rollator and I can walk much further with no referred pain.
Plus I am unable to stand - this causes significant pain but the rollator has a seat so I can always sit down when needed!!
Thank you so much for all your useful tips. It's given me something to think about and have a research into. So next time I see my Physio I can ask her about this and hopefully be able to get somewhere with this as it's driving me insane!! L x
I have siactica the pain is so bad having to drag a dead leg around the pain goes down the back of my leg and in to my knee. You are very young to be having pain like this ask your GP to send you to a pain clinic they can do radio frequency this helps me
I feel your pain..constantly being passed around is so frustrating, especially when you have to explain everything to each new doctor. I don't know if I can help but I'm sure, like everyone else, I can at least listen x
I know it's been a long time since you posted this. I was wondering how you've got on and have you still got the pain?
Im nearly 31 yrs, I first hurt back in July 2015 picking a 'dead weight' child up, then Oct my back suddenly went. Got worse had 1 session with physi cant help you as its nerve pain, now have had 2 MRI's i have a prolapsed disc where the bulge is pressing on S! nerve and a Tarlov cyst. I use one crutch seeing my gp in two days to find out what happens next has ive been told by a surgeon that i wouldn't benefit from surgery. I just can't believe it young people and they can't do anything, going to have to look in to acupuncture, reflexology etc to try anything but then if its private money is an issue. I just hate it that if you have money you will get results.
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