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I dont even know where to start...

AnonymousUserAAnonymousUser Posts: 49,321
edited 06/11/2012 - 8:33 AM in Chronic Pain
My name is Heather, Im only 30 yrs old and have had chronic back pain for over 5 years. I have lower backpain and thoracic pain and not one single freaking diagnosis on WHY i am in pain! I had an MRI but they didn't do my whole spine like they said they would, just my lower which just showed 'wear and tear' ?? I've been to pointless physio therapy, and i keep going back and complaining to my dr with no answer.
I also have sciatic pain, numbness/tinlging in my hands and legs, burning sensations in my right thigh. I was diagnosed with a slipped disk from a chiropractor in the US, but no tests to confirm. Then I saw a chiroprator in the UK where i live now who said I had luxated vertebrae (again, no test to confirm), my physio said I was loose jointed, I've tried massages (made it worse due to my loose-jointedness), acupuntcure, chiroprators, spiritual healers, and medication (which seems to be the norm her in the UK-the drs all want to pump you full of drugs instead of finding an answer and fixing it!)
They've prescribed me with valium (which does nothing for the pinched-nerve like pain in my thoracic)and diclofenac (which again does nothing for the pain). I cant take codience or any remote relative of codiene (if something sits next to codeine on a shelf I'll swell up LOL) or I get a serious allergic reaction, so traditional pain relievers are out. What is one to do?
Over here in the UK you cant just go to a specialist w/out a referral, and getting them to send you to one is like pulling teeth (due to 'free' healthcare-no one wants to spend money sending you to someone who might find the answer. It seems they all want to look at each symptom instead of thinking they could all be related :??
Im so depressed, my sleep patterns are awful, im cranky and can never get comfy no matter what i do. it SUCKS! :''( :''(
I dont know what to do or where to go anymore
SIGH! Thanks for reading my little rant-i know most of you know what it is like trying to find answers or atleast some relief!


  • Hi Heather! :)

    I'm so sorry to hear of your predicament! We may not be able to get you the help you so desperately need but we can at least give you moral support. You'll find lots of empathy on this board and no doubt someone with similar problems will be able to give you some suggestions to ease your pain.

    Keep courage and know that you're among friends! >:D<

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Puppy,
    Hang in there! That's the best advice I can give you. I "feel your pain" so to speak, I have had pain & sciatica issues, and after two years of poking, prodding, MRI's, x-rays, CT scans and god knows what else, the doctors can't tell me why I hurt either. My pain management doc put me on extended release pain meds and said I have to wait until something changes enough for them to find the problem.

    You are right, that is a tough thing to face!

    I wish you good luck in your quest to find the source of your pain!!
    Oh yes, last but certainly not least, welcome to Spine Health!
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  • i'd push the dr. hard with the fact your hands are affected. that ponts to a problem above the lumbar. ask dr. why he isn't scanning higher up, i'm getting upset and it's not my back. please give them a shove
  • I'm so sorry you are having to go through all that. Only advice I can give you is to keep pushing for more answers, more treatment. Be adament about how you are feeling and how it is affecting you. Show them how miserable you are. If that doesn't work maybe try and find a new doctor if possible, one that will listen to your needs. Good luck and I hope things start going in your direction. :)
  • have you heard about the acticare unit? its like a TENS but more ..its also an external spinal cord stimulator ..i have one and think its fantastic see www.acticare.com for full details ..dont be put off with the price .because you live in the uk you can try it for 30 days and if its no good to you you will get a full refund ..dont confuse it with the cheap TENS that you can get from the chemist ..this is a professional machine used by hospitals and physiotherapist.i have thoracic outlet syndrome{have you been checked for that?} and i also have really bad back and leg problems from a car crash and 2 failed operations {so i know a bit about pain!} if weaker pain killers are not doing it for you ask your doctor for something stronger ..i am on oxycontin and oxynorm for BT pain .if you want any more info please feel free to contact me .{i am in Manchester}
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  • Welcome Heather and great avatar. Where are you from as you mention “visiting the US” and “UK where I live now” not that that matters much and just need things attended to? I cannot help but can certainly show you that you are not alone and have lots of sympathy from people that can unfortunately relate to your situation.

    I tend to believe there is a huge variation in doctors abilities and their desire to get to the correct diagnosis and often tend to just expect the patient to “suck it up” while they “see” (as such we suffer for hours/years) instead of ordering a relatively cheap test. The balance of suck-it-&-see vs. good diagnosis is not the same from doctor to doctor or nation to nation. I have even seen several postings on spine-health where doctors reading the same MRI have given very different interpretations.

    To demonstrate in practice how diagnostics, capabilities to interpret test results, and the lack of empathy and practical considerations can vary even in very simple cases I will tell you what happened to me Sept 2008. I had a bike accident on a Saturday so went to Emergency room at a highly respected hospital and after some debate they took 5 X-Rays of both arms. I was advised of the good news that both arms badly sprained and to see GP if does not settle down :smile:" alt=":smile:" height="20" /> . Next evening the hospital telephoned me to say they reviewed X-Rays and both arms broken, and then told upon arrival “you can see where blood has gone into the bone” and that it was the “Ulna” (and proceeded to plaster both arms from arm pit to fingers). :jawdrop: The next week at the orthopedic section of the hospital they looked at X-Rays and told me I had broken both arms at the head of the Radius :jawdrop: (and stayed with that diagnosis from then on :applause: ). As getting a bit worried asked the GP (Huisarts :angel: ) to request the records from the hospital :evil: (so could go elsewhere if needed) and the hospital sent out the original assessment of bad sprain :shocked: :puzzled: :confused:" alt=":confused:" height="20" /> :angry:" alt=":angry:" height="20" /> . On the second visit to Orthopedic Surgeon the doctor measured how much could move my arms and wrists, said doing well and referred me to a physiotherapist. I asked when I would be right to get back to work and told I could return immediately :devil: . The doctor did not have sufficient empathy or consider the facts (that she just measured) that I could not bend my wrists well enough to wipe myself (after going for #2’s at WC and personally do not consider that to be the sort of thing you should ask of work colleagues). Looking back :rollinglaugh: :rollinglaugh: Note to all the spinies (particularly backies) out there, I would rather break both arms again than suffer what is happening to me now!

    Some doctors in the Netherlands are taught it is their DUTY to not refer patients (and will quote their costs vs. hospital cost) as that referrals costs the health system money whereas other doctors are happy to do referrals. With my current situation there was clear reluctance by reception staff to have me see a doctor for a week (as tried on me nine years ago with my daughter who had her appendix out later that day). I left their office stating I would go elsewhere (which is not permitted as registered to a doctor) and if not treated would notify a friend at Department of Foreign Affairs and leave the country immediately for treatment, to which they called me back and a week later after pushing for the tests now have me on narcotics (OxyContin).

    I am sorry to go on with my stories but it is to show that I can relate to being in a country where the medical system is not familiar, not being referred on when it is really needed, suffering from poor diagnosis and coming across some doctors that are not as competent or professional as we would like (and could add more). I hope you battle on successfully.

    From a practical perspective I can only suggest if you are not from the UK (all medical systems have their problems) then try to find someone that knows the system and can advise you how far you can push. I did a quick google.co.uk search and limited it to the “Pages from the UK” on: NHS Patient rights referral and found that “If a GP is unsure about a diagnosis, they could be found negligent if they failed to refer you to a specialist and you suffered as a result of this. If this is the case you can make a formal complaint.”
    Please be careful not to offend the doctor (even if they deserve it) but suggest you do the search mentioned as there are documents on rights to referrals (and limitations) and hope it helps. Most importantly I hope you get a good diagnosis soon and can recover!
    Kind Regards :hug: :hug:
  • thanks so much for the support and understanding-it is very frustrating to say the least. I am going back to my GP next friday to complain- if they have to see me every week until i get a diagnosis from someone who knows what they are doing i will!! :))(
    to answer some of the questions I saw, I am American and moved to the UK with my british husband. I was treated by dr's in both countries, but my back pain wasnt severe until i moved here to the UK. When i go to the states to visit my family, I see my chiropractor that i dealt with in the US. Trouble is that he cant really refer me because im usually not in the states long enough to see someone, nor am i in the position to travel back and forth financially.
    As far as the TENS machines, even the cheap ones I cant tolerate because of my loose jointedness- instead of easing pain it makes it worse, so Im not sure i could handle a more powerful one, the one I bought is the 'top of the line one' at Lloyd's, and I gave that to my Mother in Law because I am in agony when I use it, even on the lowest setting/pulse :(
    am curious though, what is thoracic outlet syndrome? I was reading on line that bloodshot eyes can be a result of a back issue, and i frequently have red irritated eyes but thought is was due to lack of sleep (because of pain!!) Does anyone know about this and if it has any validity?
    thanks again for the suggestions-glad I am not alone :) :)
  • I know you said you've tried physio therapy and it was pointless BUT have you tried Pilates stretches? And exercises that help strengthen your "core" abdominals? It really helped me prior to my surgery and I can't wait to get back into it!

    You've mentioned that you're depressed. Are you seeing a doc for this? A doc that can prescribe medication? And a doc or therapist that can provide therapy? Do you do any kind of work or hobbies that can help take your mind off the many painful areas?

    GOOD LUCK! :)))

  • Hi Heather (and everyone else)! I'm a newbie, just joined. My name is Nora. I feel that we have a lot in common. I am 31 and also I have severe pain that the doctors can't find the reason for. I have pressure pain in my lower back that increases from the minute i stand up until I can't bear it anymore and I have to lay down. The pain goes into my legs and effects my walking. I can't walk long distances and during the day as I walk, I feel heat sensations and tingling in my legs, and at times it feels that my legs won't hold me. Like you I have tried most therapies and tens of doctors. First time the pain occured when I was 12, but went away. At 16 it became so serious I couldn't walk for months without crutches. The pain never went away again, except for decreasing at times until the next flareup. EMG tests show that there is an ongoing inflammationin the nerves coming from the lower L4-L5 region. There is some degeneration in discs and facets, but the docs say it does not explain the problem in walking. Several MRIs and x-rays have been taken, even bloodtests to rule out rheumatoid arthritis. Nerveblocks and facet injections made me worse to the point where I couldn't walk for a month even w/ cruthes, then for 9 mos with cruthes and now finally without. The only thing that eases the pain is laying down on my back or side and curling up into featal position. Also icepacks feel good. About the red eyes. I have red eyes during flare ups. The more my pressure pain is the worse my eyes burn. The pressure starts from my lower back but spreds through my whole body and head. And also my face gets red. After laying down for some time the situation calms down. But obviously people who know me well can see it. They tell me they can see my pain level from my eyes that day. Sorry for the long letter, it just feels that I finally found someone who can relate to me and who I can relate to:)

    Hugs, Nora
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