Please can anyone offer any advice on backpain ?

I can't stand this pain much longer. My lower back is agony and struggling to walk, sit or stand. I saw the rheumy who more or less said I just have to live with it but I'm finding it harder and harder. Went for physio today and am now in agony. I've lost the movement in my neck and I am losing the movement in my hips too. I've been prescribed garbapentin but the side effects are terrible and I just feel doped up all the time. Sorry my post is so long but I try to keep cheery and then I hit a wall, and that's whats happened today.xxxxxxxxxxxxx

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  • Hi I have been feeling the same for about 2 months. Next hospital appointment is next month I hope they don't say the same thing. ...am very worried. ..I hope something helps you soon. . Xx Uzi xx

  • Hi. Sorry to hear you are in so much pain. I too get neck and back pain. I was prescribed lyrical which helped the pain but gave too many side effects. I now take gabapentin. It took a few weeks to adjust to it and it doesn't control the pain as well as the lyrical did.

    Have you tried a chiropractor? When I have seen physios in the past I always felt they didn't look at everything because it wasn't on their referral form! I start seeing a chiropractor last October as my neck pain was so bad I could hardy move. It was very expensive initially as I had to go 2-3 times a week but it worked. I now go every 2 months just to keep everything in check. Best to try and see one who knows about Lupus or is willing to learn!

    I hope you get some relief from the pain soon. Take care.

  • The trouble is crazyk, I was turned down for dla and so money is very short. To be honest Ive had a bit of a gutful. Lost my brother recently as well and I think everything has got on top of me today.

  • I hope you won't mind me saying this but if your DLA was turned down in the recent past and it isn't too late I really urge you to appeal. I know it's enough to drive you crazy with all the papers but I was told that if you find a local solicitor, for a very low fee, or maybe you can get help (some of them do one hour for a low set fee) and you get the solicitor to complete the form with you and he will see to it and send it for you, then they take more notice.

    I did not use this procedure myself because at the time I didn't know, but I did decide to appeal and I won my case. This was a long time ago but it was worth all the hassle. I have Lupus and all the related side-dishes that it comes with. I hope you find this helpful and good luck.

    Kind wishes, Carol.

  • Rest rest and more rest ! I have found sitting in bed propped up with my electric blanket on eases the pain. I had a full CT body scan last month to try and find out possible causes of constant back, hip and chest pain - not been to discuss results until next appt with Renal const next month. Being under stress with the loss of your brother will have made things worse for you. Take care and hope things improve for you soon hun :)

  • Thanks Pattismith and I'm sure you're right about the stress making things worse at the moment. Just had a good old cry and felling a little better now (although my back is still terrible). Sorry to moan but had to get it out somehow. xxxxxxxxxxxx

  • Have you tried accupuncture? Iv been getting it on my lower back and hip for a few weeks now. This can be expensive however ask your gp about it as one of the doctors in your surgery may be trained and able to do this for you and so it wouldn't cost you a thing.

  • I had a double discectamy and was left with a lot of pain due to the scar tissue. I started doing pilates with a brilliant instructor who understood that some sessions I was just too tired to keep up with the rest of the group and gave me alternatives on those days. I can't believe the difference it has made. It's never going to make it go away but it makes it so much easier to cope with-added benefit is for the first time in my life I'm happy with the way my bum looks!

  • Hi, sorry to hear about your brother, my condolences. The loss will not have helped with your body which can react in different ways but I think it sounds like you had an underlying problem already. I suggest that you go and see your GP and ask for a referral to an orthopaedic specialist as they know more about backs than anybody. Where do you live as some orthopaedic specialist hospital take referrals from a very wide area. I go to Gobowen hospital which is near Oswestry but takes patients from Midlands and Birmingham etc up to Cumbria. Also Rightington hospital is near Charnoc Richards (Camelot theme park if you know it) again takes from a huge area. I am now on a cycle of spinal injections similar to steroid but direct into the area done under a scan in an operating room. I have once every 6 month (he wanted to do every 3 months but can't due to waiting list).

    Osteopathy is a good alternative therapy. I was told due to my specific problem that under no circumstance should I go to a chiropractor as they could cause more damage.

  • I was in agony with back pain even with all my meds and eventually found I had broken a bone in my back.So keep at them to find the cause.There are other things that might help like tramadol, amitryptiline etc. Constant pain is so hard to deal with and I just think they could do more for you.Hope things get better soon.

  • I know exactly how you feel!!! I have had back problems on and off for the past 20 years, had physio etc., etc., but nothing helped. I went to my GP and said I've had enough this is taking over my life I need to see a Specialist. She agreed I had a facet joint injection approx. 2 years ago and it worked I was free of pain for a whole year. Unfortunately, the pain returned so I went back I have since had 2 more injections which helped a little but not much, The last one caused my back to go into spasm which lasted 3 weeks (absolutely agony). I was put on Baclofen and Amytriptiline which helped a little, but they made me feel terrible (woozy, aggressive) after 3 months I have weaned myself off and am a lot better, only get pain if I overdo it so just rest for 10 mins with a heat wrap till the pain subsides. At least I can get on with my life a lot better. So please don't leave it as long as I did and get to your GP and insist on seeing a specialist. I have a lovely GP but she couldn't help me with a health plan as she didn't specialise in this field. There are people out there who do so lets use them. I wish you all the best.

  • Thanks everyone for some great advice. I'm feeling a little better now although still in a lot of pain. I phoned my rheumy at the hospital yesterday and told them I couldn't stand this pain any more and I needed to see him asap. They are sending me an appointment and I won't be fobbed off this time. I know that lupus and fibro are not curable but surely there must be something to make life more bearable. I was taking amitriptyline but the g.p took me off that and gave me gabapentin, but neither has worked to be honest. Sunday, I could not put my feet to the floor because the pain was so bad, was going to go to a&e but didn't know if they would do anything because I am already under a doctors care. My fighting spirit is back now so lets hope they can help me this time. thank again and hugs to all xxxxxxxxxxxxx

  • Doctors have no idea at all what effect back pain has on patients unless they see them when they are obviously suffering with it.

    At my last consultation I mentioned that since my previous appointment I had suffered an extreme back problem. The worst it had ever been. By the time I saw the consultant the problem had resolved.

    In the clinic notes it said ...she has had some exacerbation of back pain. It is not troublesome at present.

    All true but failing to point out just how bad it was. I was unable to stand or even sit upright without using a stick as a supporting tripod for 6 days. It was taking 10 minutes to turn over in bed and about 45 minutes to get to standing from bed. I couldnt get to my GP as it was hard enough to even get from one room to another.

    When I get it, I try to keep warm. Not sit too low. Have essential food items at worktop height. Make sure that I have sticks close by at all times and hang a mobile phone around my neck in case of emergencies. I always keep a stock of food essentials indoors anyway these days.

    I know its hard but really when its as bad as you state, there is little more than rest that will help. When it is that bad extra movement just seems to make it worse and a period of rest allows the muscles to heal (thats if its a muscle strain). As things improve then steps can be taken to try to improve muscle strength.

  • You are so right about movement making things worse because that's exactly how I am. Its still no better and I've phoned my rheumy but no response so will ring again on Monday. Ive got to use my stick but even then can only take little steps because the pain makes me wince. Ive noticed the tops of my legs and my one foot is going numb too and that's worrying. Thanks for your replyxxxxxxxxxxxxxxxxxx

  • One other thing I do is try to prepare myself mentally in case things dont go to plan.

    I make sure I wear pads in case I cant get myself to the bathroom. Luckily I have always managed.

    I tell myself that it has always passed previously and it is just a bit more of the old familiar.Time to call in favours.

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