Lifelong Battle! Lower back pain — Scope | Disability forum
Please read our updated community house rules and community guidelines.

Lifelong Battle! Lower back pain

blueberrymuffin
blueberrymuffin Community member Posts: 1 Listener
I am a 25 year old female. Ive experienced lower back (can spread upwards as pain increases) since I was maybe 8. I’ve seen tons of doctors, pain management, orthopedics, chiropractors, you name it. I’ve had X-rays and MRIs, and everything comes back MOSTLY clear. I’ve been told I have degenerative disks, osteoarthritis, mild scoliosis, and “military neck”, but every doctor says the same thing “This doesn’t explain your immense pain. I can’t sleep without taking Gabapenten, Flexeril, and a handful of other meds. Without them i’m changing position every 30 minutes to an hour. I wake up in pain, I can’t sit in one position too long, and by the end of the day i’m in so much pain. I gave birth to my 3 girls from 2014-2018, vaginally. Every since then my pain is extreme. I can barely do anything psychical, i’m so moody, and exhausted mentally. I finally found a doctor who takes me serious. I’ve currently been on Cymbalta for 5 days now, for fibromyalgia. I don’t feel anything yet, but it can take a little while. I also am redoing physical therapy for like the 5th time, and my doctor wants to try trigger point injections. Does anyone else have any stories that are similar to mine?

Comments

  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @blueberrymuffin and a warm welcome to the community! 

    I'm sorry to hear you have been in so much pain for such a long time. I know that a diagnosis of fibromyalgia can take a long time to receive due to the nature of the condition.

    I'm glad you have found a doctor that is understanding, I imagine this really helped!

    I hope some people on the community can share their experiences and please do let me know if there is anything the community can do to help :)
    Scope

  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Hello @blueberrymuffin
    Sorry to hear that. But a kind caring specialist does make a difference, doesn’t it? Unfortunately I have no experience. 
  • Matilda
    Matilda Community member Posts: 2,593 Disability Gamechanger
    I am sorry to hear of your suffering. have lower back pain but not as bad as yours.  I have found osteopathy very beneficial and the exercises osteopath has given me.  Unfortunately osteopathy is not available on NHS and not cheap.  But worth it if you afford it.

    on the wider issue of the merry go round of tests showing little wrong but I know my symptoms. I'm going through this at the moment.  I'm going to ask my consultant if the tests DID show any serious problem would there be any treatment! I think I'll get a blank stare.  And this is at a supposedly top NHS hospital.
  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    I’ve had that problem before. Over the past three years we have met with several doctors and therapists. His medical team had no answers for me at first. I attended many appointments with unanswered questions. None of the specialists could give me decent information. I made requests trying to advocate for my son.
    One appointment was memorable for all of the wrong reasons unfortunately. And it is annoying, isn’t it?  I left the room unsure what to expect. The urologist refused to conduct tests. I have made complaints to patient liaision services as well. 
  • Matilda
    Matilda Community member Posts: 2,593 Disability Gamechanger
    It seems common that patients have severe symptoms but tests show 'nothing wrong'!  Apparently, doctors themselves say that medicine is more of an art than a science.  Very little is precise.  Often doctors seem to be floundering around in the dark.  

    My previous rheumatologist told me that back pain is 'something we [doctors] are not very good at'!
  • Matilda
    Matilda Community member Posts: 2,593 Disability Gamechanger
    My time was wasted this morning.  A neurologist conducted some tests and couldn't find much wrong - but I've still got the symptoms!   

    I'm just thankful for osteopathy, which helps, rather having to rely on conventional medicine.  It's a different approach.
  • Matilda
    Matilda Community member Posts: 2,593 Disability Gamechanger
    Conventional medicine can miss a lot.  A friend of mine's GP missed signs of her cancer.  She was finally diagnosed after eight months - by which time it was too late.

    Doctors should pay more attention to patients' symptoms than to 'test' results.  Tests show diddly - but nevertheless the patient's symptoms are serious!
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @blueberrymuffin, I'm tagging people who have previous spoken about Fibromyalgia.

    @Saffy, @ricky1040, @AvaKat and @carebear2611 :)
    Scope

  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    Hey there @blueberrymuffin

    It sounds like ur having a thought time. I was also diagnosed with fibromyalgia around 5 years ago after a serious health issue which left me partially sighted. 

    I get widespread pain but mostly in my legs and shoulders and back.

    I too was taking cymbalta at the maximum dose. They did definately dull the pain to a more manageable level. But there where a lot of side effects. In the end I decided to come off them and had a very rough time doing so. I am finding the pain more manageable than the side effects. 

    I try and do a little walking every day and get physio every few weeks and have hot baths and use ice packs too. Sleep is difficult but If i have a real hard time i have a non addictive sleep aid called phenegran which does work. I try to use it as little as possible tho as it makes me very drowsy the next day but needs must when u ain't slept for 3-4 days. 

    I also tried antitryptalin co codamol lyrica naproxen and others in the past. Apart from the cocodamol all them made me feel awful. I still take cocodamol now but only the 15/500 ones.  

    I have say I prefer life off the hardcore opioids. It was a bit of a lost few years to be honest and the withdrawal was brutal. Now I get pain but I cope. I am a lot happier than I was. 

    I dunno if I'll ever be pain free but not being spaced out and sweating profusely and shaking and sleeping all time is a definate improvement pain or not.

    May e ultram wont effect u how it did me and I really hope u get some sort of solution.


  • skiptonlady
    skiptonlady Community member Posts: 4 Listener
    Hi, I too have degenerative disc disease and scoliosis and one thing I did to help sleep and wake up not too stiff was to buy a pressure  mattress, there  are  sections inside and they go up and down alternately gently moving your back all night. It is a bit weird for a few nights but really worth it,  I placed mine on top of my normal mattress. They used to be £1,000 but now you can get them for less than £100, even less if you buy used, there isn't much to go wrong with them, I hope this may help
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @skiptonlady, thank you for this advice!
    Scope

Brightness