Symptoms and medications

Hi all, newbie here, fantastic to have found this forum! I wanted to ask if anybody gets severe lower back pain with their fibro. I was diagnosed about 4 years ago; I also have an autoimmune disease called sjorgrens which makes my joints painful and has also damaged my nerves. I have lower back pain constantly, it goes away when sitting but starts as soon as I stand and when I walk it increases in it's intensity. I also get muscle spasms which come on if I make a sudden movement or have had a lot of physical stuff to do. Would also be interested to know if any of you have problems with very hot or cold weather. The sun makes me feel ill and if I get cold it takes a long time for me to warm up. I take lots of meds, the ones for pain are gabapentin, amyltripteline and naproxen. They don't seem to be doing much. I'm not sure if my symptoms are to do with the fibro or something else. Would love to compare notes, you all have my love and empathy! x

18 Replies

  • Sorry to hear you are struggling so much with your back? A lot of here struggle with our backs.

    For me my back affects my mobility and really find it hard to stand.

    If the medication is not working why still do you take them? Maybe try something else like physio, painclinic or other meds?

    Hope you find the answers you are looking for:-)

  • Hi decoleman28,

    Welcome to the right place, I have had fibromyalgia for around 16 years, I suffer terrible from lower back pain and my legs , my body temperature fluctuates , but I do take mega medication for breathing problems as well, one of the drugs you mentioned i also take that's gabapentin, I take 600mg 4 times a day but started lower but increase over the years, I wouldnt change it but I have others along with it and its a good combination i have had for some years now occasionally the dose age is charged but i am reluctant to change anything as it took years of trial and error to get something that gave me some quality of life, I am still in pain most days but bare able unless I have a flare up. But I have liquid oxycodon that I can take hourly if I need to but I try to only use it when I cant stand the pain anymore,

    I find heat pads help ease the pain or reasently I found bio freeze and its good for my back and knees , I use the gel or spray depending on if i have anyone to help me put it on the spray is good for the places you can't reach yourself. Lol

    You will find that there is a lot of friendly people on this site who share hints and tips abd its not all serious we have a laugh as well, sometimes if im not upto posting i just read the posts and often they cheer you up.

    All the best, wishing you a pain free night

    Loraine x

  • Hello and welcome I will tell you as I advise all the new members Fibromygia spreads all over the body that's what Fibromygia is Look up Fibromygia on the net HHS choices will advise you have you been diegnosed with the cronic pain condistion If you have we are nice people here to help you

  • Sorry to hear and I hope you get better. I have Fibromyalgia and I experience a lot of back pain. For me personally it hurts unless I'm laying down. Idk what causes my muscle spasms but I get those aswell. Haven't really noticed much with temperatures but I do know that if it gets hot in the house I start having flu like symptoms. Good luck and I hope you have a great day.

  • Hi dcoleman28

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    I am so genuinely sorry to read of how you are suffering and struggling, and I have pasted you a link and an excerpt to the *NHS Choices cache in this issue:

    *Medical conditions that cause back pain

    *Conditions that can cause back pain include:

    a slipped (prolapsed) disc (a disc of cartilage in the spine pressing on a nerve) – this can cause back pain and numbness, tingling and weakness in other parts of the body

    sciatica (irritation of the nerve that runs from the lower back to the feet) – this can cause pain, numbness, tingling and weakness in the lower back, buttocks, legs and feet

    ankylosing spondylitis (swelling of the joints in the spine) – this causes pain and stiffness that's usually worse in the morning and improves with movement

    spondylolisthesis (a bone in the spine slipping out of position) – this can cause lower back pain and stiffness, as well as numbness and a tingling sensation

    *NHS Choices - Causes Of Back Pain:

    The **HealthLine website says it could be bad posture? I have pasted you an excerpt below:

    **lower back pain during and following running, walking, lifting, and other upright activity is usually from allowing the lower spine to over arch. This hyperlordosis is not caused by an anatomic problem "condition." It is a bad posture, which is easily correctable.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you


  • I also get lower back pain which comes on when I try to do things . I have a stool in the kitchen so I can sit as much as possible when doing things in the kitchen .

  • Hi ya :-) My sincere sympathies for you :-( I too have FM (diagnosed 10 years ago) and for the last year and a half have suffered with severe lower back pain immediately following surgery. I'm not sure if it was a flare triggered by surgery or if, somehow, the surgery resulted in nerve damage in my lower back, all I know is since then I have this constant throbbing heavy very painful ache in my very lower back/hips area. I was initially tried on different meds like amitriptyline (apparently ideal for nerve pain), norflex, naprosyn, diclofenac - all with no success at all. Eventually, after nights and nights of not sleeping and very limited movement (and we know lack of sleep makes fibro even worse), my Dr gave me oxycodone, 10mg twice daily. I have been on that now since Christmas 2016 and while I still get some breakthrough pain, i have regained mobility and can sleep right through the night with the help of a low dose of diazepam to relax my muscles at night. There seems to be no obvious mechanical cause for the pain so by elimination, at this point, it's likely nerve pain. I'm still waiting on an appointment with our DHB pain management clinic. Keep pushing your Dr to find something that helps you - long term chronic pain is mentally and emotionally debilitating - let alone the physical side effects of reduced mobility and fitness. Good luck :-)

  • Hi your post caught my eye I have had the dreaded F for a long time. I had a hip replacement 2 years ago but the lower back pain is so bad now I have tried walking with sticks but can only walk a little bit before my upper thighs start to go numb the pain gets so bad. not sure if it will help but I have just bought a 4 wheel walking frame with a seat I don't know why but it really helps with back pain and can walk a little longer and have the seat for a rest I don't put as much weight on frame as I did my sticks but it really helps. I hope you find something to help you Olivia

  • As well as your meds look at investing ina Tens machine for the back. Its basically a belt and ita designed just for the back. Your only one of a few people that can have gabapentin and pregabelin with no major side affects or weight gain. I would sit down with tour GP and have a chat or asked to be refered to pain management. I your having muscles spasams and twitches why you not on things like baxlofen an diazpan. You might need to go on a stronger pain med something you will have to discuss with your gp. Looks like the shove every patient on Amyatripeline. Im on round about 25 tablets a day fir my fibro and theynhardly work. Joys with Fibro its a trial and error game.

  • Chrisbrooke 9, a Tens Belt? I have a Tens Unit but it attaches with pads and wires into control box . I place pads on different trigger points on my butt for sciatica pain relief. So do you wear belt around waist, then how does it work ?

  • Your not supposed to use the ten machines with pads on your back is a no no. So they have invented a tens belt for your back. Its a belt goes round you pop in the controller and of you go getting zapped. I tried the boots one at first to see how it went and i was suprised with the results really good, so ive done some more research and they say best back machine is a tens unit. So ive imported it in feom America $50 with delivery ill let you know in due course how it goes

    Thats it from Amazon but search Tens 7000 and make sure its the back version normally import only. Its been ratwd best machine. Ill dig out the article on back tens machine so you can read up on the top 10 machines might be 5 cant remember sorry.

  • Chrisbrooke 9, when I looked at Tens 7000 System , there was belt plus 4 patches ( like I have with Tens Unit I have now). So, I am confused, can you wear just the belt and get the electrical zap FROM the belt? Or do you also have to put on the patches? Or is it a either/or ? I have seen what looks like JUST THE BELT ? Please advise .

  • Leave it with me for the Tens 7000 as ive nkt recived it in feom America yet. Ill have a dig around about the unit and see what information i can find for you. I know the boots version is just a bult.goea round you wet the pads at the back fasten belt round you put control unit in of you go. Ill be back tonigjt and update you sorry for any cconfusson. I no.for defo unless it says back tens machine then youre not supposed to use it. That info also came.feom physio aswell as online neber ise a normal tens machine.on your back and also dont use pads on your shoulder neck or anywhere at the back as the same your stomach.

  • Chris, why do you say not suppose to use Tens on back ? Works GREAT for sciatica pain !

  • I cant answert that ill ask physio next time also stayes on line nkt to use a normal tens machine on your back unless its a back tens maxhine and clearly states back. I could just be simple as as could disrupt some.signals or something so not much help but ill look into it

  • Hi I'm new too and have never joined a forum before but must comment on your post ,I too have severe lower back pain but I have multiple bulges at multiple levels down my spine which at times ,well most of the time ,makes walking difficult as legs become weak and nerve pain goes down to the soles of my feet perhaps you too may have disc trouble ? I also take naproxen, pregabalin and mirtazipine and still suffer maybe it would help if you got a muscle relaxant ? I get one also but am afraid I can't remember how to spell it !!! But I wish you well and a pain free day's hoping xx

  • I have fibro and suffer from these symptoms. I take the same pain relief meds as you plus co-codamol and morphine, but they still don't relieve the pain! I take quinine sulfate for the muscle spasms/jerks with varying effect.

  • yes l to have lower back pain alday then later on to the evening it goes up to my back l now getting in in my left hip and finding it hard to walk l also get very hot one min then cold and then my back all hurt l try and put a warm hot water bottle on my lower back now to ease it. l cant walk very far with out my lower back pain kicking in

You may also like...