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Doctors Have No Clue - Looking for someone who has experienced/seen this

I'm new. Hi everyone. Happy and sorry to be here.
I'm looking for someone who has experienced what I have, or similar or who can point me in the right direction.

About a year ago I started to feel pain in my lower back that would start in the afternoon and get more intense as the day continued. This started to happen more frequently than 2 days a week.
I am in pain if I stand, sit, lie down, walk, or stretch. It can be so severe it brings me to tears.
I have muscle spasms in my lower back (that is the only thing evident to me, whatever else is happening is unknown)

In the last couple of months my pain has become more frequent and more severe.
Some days I am so stiff I can't walk very well especially after sitting down for a while. In the past 3 weeks; My legs can at times feel slightly weak and feel a gentle tingling up and down the back of my legs. In the last week, I've woken up in the morning stiff and still in awful pain. I used to find relief in the mornings for a few hours. Now that's gone too. In the past 2 weeks I've experienced knots in my muscles from my mid back to tail bone... yes, muscle knots on my bum. Lovely, isn't it?

I have yet to be prescribed any medication that helps... at all. (I'm from the U.K)
I've tried co-codamol, tramadol, naproxen, amitriptyline, methocarbamol and meloxicam so far... so narcotics, anti-inflammatories, an old style anti-depressant that relieves pain (apparently) and muscle relaxants. In the beginning it took three 50mg tramadol tablets in one sitting to make even a small dent in the pain and that level of consumption just wasn't viable or advised by the prescribing doctor.
The only thing that sometimes soothes the pain somewhat is a hot water bottle. Heat patches, sprays and gels don't work at all. Is there anything anyone can reccommend I take/use while investigating this?

My doctors have ran blood tests to determine vitamin and mineral levels - normal. Organ function - normal. X-ray on lower and thoracic spine - completely normal. I have to make an appointment to go back in and I'll have a hell of a fight to make for any other pills to try and possibly getting an MRI to get a proper look at my back.

I'm female, 25 and I was not injured. I did not fall. I have good posture, am a healthy weight, I've exercised regularly for years, eat a good diet (have hypothyroidism also, so have to eat well.) My job is active but not strenuous. I have regular life stresses but nothing radical. I don't drink very often at all but I smoke a little bit... Oops.
I have no history of back pain, or any type of localised pain without injury to the area and even then I've never broken a bone. I've had hypothyroidism since I was 14 and have taken a high dose of thyroxine (synthroid) every day since diagnosis. I have no confirmed allergies although have difficulty metabolising sugar and starch and don't generally eat the stuff.

I've seen 5 different doctors in the past 6 months. I've searched online through everything I could possibly think of related to the back, the muscles, the nerves... Nothing fits.

Can anyone help me in any way with this? Because I'm not dealing with this very well anymore.

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Comments

  • SavageSavage United StatesPosts: 5,940

    Welcome to Spine-Health

    It would be very helpful if you could provide us with more details. So many times we read about members who have different tests and they all come back negative. The more clues and information you provide, the better chances in finding out what is wrong,

    Here are some questions that you should answer:


    - When did this first start?
    - Was it the result of an accident or trauma?
    - What doctors have you seen? (Orthopedic, Neurosurgeon, Spine Specialist, etc)
    - What Conservative treatments have you had? Which ones?
    - What diagnostic tests have you had? And their results (MRI, CTScan, XRay, EMG, etc)
    - What medications are you currently using? (details, dosage, frequency, etc)
    - Has surgery been discussed as an option? (If so, what kind)
    - Is there any nerve pain/damage associated?
    - What is your doctor’s action plan for treating you?

    Providing answers to questions like this will give the member community here a better understanding
    of your situation and make it easier to respond.

    Please take a look at our forum rules: Forum Rules

    Please remember that no one at Spine-Health is a formally trained medical professional.
    Everything that is posted here is based on personal experiences and perhaps additional research.
    As such, no member is permitted to provide

    - Analysis or interpretation of any diagnostic test (ie MRI, CTscan, Xray, etc)
    - Medical advice of any kind
    - Recommendations in terms of Medications, Treatments, Exercises, etc

    What could be good for someone could spell disaster for another.
    You should also consult your doctor to better understand your condition and the do’s and don’t’s.
    It is very important that new members (or even seasoned members) provide others with details about their condition(s). It is virtually impossible to help another member when all the details we have are
    I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

    Diagnosing spinal problems can be very difficult. In many ways its like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then its up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

    Specific comments :

    Personal Opinion, not medical advice :

    ---------------------------------------------------------------------------------------------------------
    --- Ron DiLauro, Spine-Health System Moderator :
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • SavageSavage United StatesPosts: 5,940
    edited 06/04/2015 - 3:53 PM
    Is the doctor prescribing for your pain a pain management doctor? Or other kind of spine specialist?

    The only other thing that comes to mind is, when I started seeing my PM/neurologist, he ordered different tests.
    One test was EMG and that was most revealing to doctor. It showed areas on my spine effected that I never even gave voice to.

    Others may come around who are better able to relate to your symptoms.
    You're not alone! Hang in there
    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • I'm not even sure if I have access to a pain management specialist. But that is one thing I need to bring up with my doctor. I really need that kind of support while the source of the pain is located. But it makes me so angry and upset because doctor's aren't just reluctant to prescribe pain management... they just don't.

    I've only been seeing GPs, because they're the front line and I can't see any other specialist without a referral... or a pile of money. I have enough money to do certain things privately and a private health plan that will get me reduced cost access to other forms of medicine like an Osteopath, whom I am considering seeing for a fresh perspective and a hands-on approach.

    I've seen a podiatrist (no fallen arches, very good arches actually) I've been to physiotherapy for 6 months... nothing. I can do exercises easily that aren't in their program for 'beginners' so it was ineffective. I've done yoga (hate it. it didn't work) I had an x-ray and all I was told was that it was totally normal, no abnormalities at all. I've been referred to physio again... Not looking forward to it.

    An EMG looks to be useful! I'll print some information and take it to my doctor.
  • itsautonomicitsautonomic LouisianaPosts: 1,941
    It's hard to comment without knowing full extent but are your thyroid levels normal and regulated I saw you said thyroid issues in past . This alone if off can have serious effects on pain and muscles and just generally feel bad . Are you on synthroid?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • SavageSavage United StatesPosts: 5,940
    I, initially was working with my primary doctor, about two years before she referred me to pain management.
    Prior to that, I was trying to tough it out for almost a decade before going to primary.

    During that time, I went to chiropractor on and off, until my symptoms had me wanting to pull my hair out as they only worsened and new ones added. Yes, I was on a slow learning curve. :)
    At that time, I wasn't aware of a pain management doc. You know the saying, you don't know what you don't know.

    I think my primary doc did her best for me, but specialist is best at knowing, or at least trial and try again approach to proper pain control, and aware of more testing available to diagnosis spine issues.
    They are best to monitor meds given and follow up with, for ex urine testing to be sure one is in compliance.

    Sometimes the dosage of pain medicine will seem too high for primary docs to be comfortable to prescribe themselves, whereas the specialist is aware more of body tolerance and is continuing to monitor it.

    My PM doc also neurologist. He doesn't just accept findings from another doctor reviewing my tests.
    He always want to review test itself and he will talk to me about how written finding contradicted itself, or it pointed out something that's not there, or ignored something that my doc did see.

    That's why tests and their written findings are not diagnosis in itself. They are tools doc uses to search for source or cause of pain.

    To ask your primary what he thinks about referral does not seem out of line.
    To have a new pair of eyes looking at our pain in itself can be helpful.

    Please keep us posted on how you're doing!

    Sue
    Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • emma777eemma777 Posts: 19
    edited 06/05/2015 - 9:10 AM
    Are you from the UK? I h am going to see my 5th doctor on June 23rd and am still in pain with no solution. I have had injections in my hip and back that have not worked. The last doctor I saw last would not move up my appointment time or prescribe me meds even though I was in extreme pain. He said to me, "I am the knife guy, not the pill guy" You have to shop for doctors, just like everything else, because some are good and compassionate while others are in a hurry and just see dollar signs. If you don't feel comfortable with a doctor, find someone else. I think some of these doctors forget they have jobs and big pay checks
    because of us. Hope you feel better soon. This is such a long journey, especially when you are not finding the right doctor right away.
  • June77JJune77 Posts: 24
    edited 06/05/2015 - 9:25 AM
    Have you had a complete blood work up? Certain blood cancers can cause back pain. Just to rule it out.
  • Hi, an MRI is a very good idea, the doctors will have a better clue. My anti-inflammatory is cataflam/diclofenac. That helps with my shoulder swelling and part of the swelling in my back. Without a look inside they won't know what to give you though for the rest. For muscle spasms I was on valium which worked more than the tizanidine I am on now. I was told tonic water because it has quinine may help to with spasms.Haven't tried yet, but talk to your Doctor. Get better tests and good luck...... Back pain can be unbearable, especially when waiting to see whats wrong. Xrays can show shoulders out of sockets and bones broke, but they don;t show,discs nerves,etc like an mri. Again, good luck..
  • Thank you all for responding! Yes I'm from the U.K... Northern Ireland actually so limited resources are even more limited for me.
    My thyroid levels are stable. I've been on a 200mg of Levothyroxine for a long time, previously 300mg. But I was tested a few months ago and I'm alright there. Right dosage and T4, T3 kevels on point.

    I think an MRI is the next step. Only 1 GP seems willing to make the appointment, the same GP who ordered the X-Ray and the blood tests. The blood tests were very thorough I think. Any signs of arthritis, vitamin and mineral deficiences, organ function. I will ask about such nasties as blood cancer though.
    I don't have any sciatia although I did briefly last year. The doctor suspected a slipped disc as I couldn't sit down without intolerable pain building and building. My experience now is completely different.

    I've seen in the last few years, with regards to back pain, probably 9 or more different GPs. I am a healthy weight and size 10, and exercise regularly even with the thyroid issue. So 1 lady GP stated a few months ago that she would only be concerned if I was incontinent and even though my muscle spasms sounded severe, if I exercised rigiorously for 2 years and lost weight (?!) I'd start feel better. So I haven't had the best experience with GPs this far.

    And GPs are even less likely to prescribe medication like Valium here, I would love something like Diazepam for -bad- days, where I'm above 7 on my pain scale and crumbling into emotional mess.

    I've been sore everyday for over a week, the pain as usual goes up and down the scale. I'm afraid it's going to impact my job noticably. When the pain is above a 5 and I'm stiff, I move slower... It means I don't finish my work as quickly as I might need to.

    Practically in life... I don't know how to prevent the spasms. If I'm on my feet for too long, pain. If I sit down for too long, pain, some days active with rest periods, pain. Some days the pain doesn't start until the late evenings, some days I wake up stiff and achey and the pain begins early and stays with me all day. A good few nights I've hardly slept because the pain isn't receding in bed at all. How on earth do you live long term with that without help?
  • itsautonomicitsautonomic LouisianaPosts: 1,941
    Not everyone has good results with levothyroxine and have had much better results with other stuff. You can read online several sites for bad reactions to it with pain , spams and many other stuff. Might be worth reading about
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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