Update on Back pain

[lillyanne]

For a year I have suffered excruciating back pain. I told my rheumy and he said that it was from the Lupus and there was nothing he could do about it and pretty much washed his hands of me. I am now barely able to walk so went to see my g.p who ordered an x-ray and I've just had the results. I have no discs left in the last five vertebrae so am basically rubbing bone on bone every time I walk. The vertebrae are also disintegrating. I am so pi**ed off that all this time I was ignored by my rheumy whilst slowly getting worse and worse. I've now been referred back to the rheumy and all I can say is he better have a good explanation as to why he didn't x-ray me in the first place. I am really upset because I've been hoping all along that the pain would go and I could maybe go back to work but that doesn't seem likely now. Just wanted to have a moan and am now off to have a good old sob. Love and hugs to all xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[anbuma]

i can sympathise with you. dont know why doctors just want to ignore whatever you tell them your symptoms are. i have symptoms of lupus and a thyroid problem and my dr is ignoring these.my rheumy ignored me when he said I need to lose weight after telling him I had lost weight on arms and legs and any weight gain was abdominal which I had no control over and taht I couldn't diet cos I don't eat much,no cakes biscuits puddings ,I have just had a keyhole surgery to remove gallbladder which was only picked up when I saw a private gp because mine refused to do another scan.

[dawnie43]

I've got lupus and have been in so much pain with my lower back , doctors sent me for x-ray and nothing showed up so last week I had to have an MRI scan , I go and find out my results on the 19th sep 2 days before my wedding, am finding the pain very hard to deal with at times x

[EOLHPC]

Hooray lillyanne: you've done SO WELL!!!! Despite your careless, thoughtless, patronising consultant &@£¥$%^+#*

I've lived with severe spondylitis all my life due to a childhood fall on my head from a great height + global hypermobility and a lost infant & teen SLE diagnosis. I've had chronic back pain (mostly cervical spine , lumbar & sacral all my life) with SLE related referred soft tissue pain which drs all underdiagnosed. My life has been one long campaign to figure out what my pain has been about, with plenty of MRIs etcetc and loads of consultants telling me nothing they can do and i'll feel better when i'm older...and everyone thinking I was a hypochondriac.....they were all basically missing what was staring them in the face.

So, I've spent years on useless, damaging long termheavy pain Rx, had numerous ops & procedures, been forced to retire early etc etc. BUT, like you, I persevered and FINALLY got both effective treatment & full diagnosis. Since a 2010 SLE (re) diagnosis breakthrough, I now have fab consultants whose treatment is dramatically effective....and drs in all my clinics show me so much respect that haha: after each clinic appt. I feel like sobbing with joy! PLUS I've found this great forum and no longer feel alone. I turn 60 in oct and feel as if my life is starting afresh....(except: too bad the damage in my feet, of all things, has progressed so far due to untreated SLE that I am debilitated enough to have to avoid weight bearing)....I guess I'm saying: it's never too late to benefit from finding good diagnosis & good treatment & celebrate

Seems to me a good VENT & SOB now & then is VITAL: most of us feel plenty of frustration & depression due to all the stuff going on with our health.....so, I'm glad you let it all hang out! much better then bottling it all up. And, here, you know we REALLY do understand & sympathise!

And, as well as having a really good moan: am hoping you can dig deep to CELEBRATE your diagnosis achievement: my feeling is: HEY: you really really deserve to....do something really special that means smiles all round!

So, HUGS and Congratulations! Now you're through to accurate spine pain diagnosis!!!!! Now: best of luck with treatment: you're all set to move on in a more positive direction.

Take care & good luck. XO

[lillyanne]

Thank you so much for your kind words Barnclown and yes, I do tend to have a good old cry and get it out of my system. Today its onwards and upwards I was just so frustrated with my Rheumy but thank heavens Ive got a lovely G.p who has written to the Rheumy for me and told him the results of the xrays and that I need to be seen urgently. I did feel like a hypochondriac but I also felt there was more wrong than they were saying and could they just check it out, but basically it was 'go away and live with it' but, as you well know, I found the loss of mobility really hard to deal with and have got more and more frustrated because of it. Hopefully now the rheumy will do something otherwise it will have to be a second opinion I'm afraid because I'm not prepared to put up with his patronizing anymore. thanks again for your support. Many huggies xxxxxxxxxxxxxxx

[EOLHPC]

Take care dear! Your post & reply inspire me to keep on keeping on putting my best foot forward (that's my left foot, haha). Thanks for saying it all so well! XO

[madmagz]

Lilyanne you poor love, I can sympathyse with you as I have suffered from chronic back problems for years was born with a twisted spine and things escalated from there on in. One thing I will recommend that I was given when I was waiting for surgery on the base of my spine and was in a wheel chair is a T.E.N.s it is worth it's weight in gold dust and is the difference between me being able to walk and not walk. I started going to a pain clinic instead of going to the rheumy about the problems in my joints as I have lots of allergies and pain killers are something I can't take so this was a God send when they got it out of the box and showed me how to use it. They are now available in chemists but it might be worth finding out if there is a pain clinic that you can go to so you can try one out. I still have mine and just make sure I have good batteries and decent pads for it and I lead a full and active life I no longer use a wheel chair and only occassionally use a stick.

Good luck sweetie, I hope you manage to get to use one and if you do fingers crossed it works for you,

Madmagz x

[lillyanne in reply to madmagz]

Hi Madmagz and thanks for the advice. Someone else mentioned this to me about two weeks ago but I had completely forgotten about it but I'm definitely going to have a look into the Tens machine. There is a local pain clinic so I'm hoping that when I see the rheumy, he will refer me there but was just wondering could I ask my G.P to refer me? Does anyone know if I can? xxxxxxxxxxxxxxx

[madmagz in reply to lillyanne]

You could ask your G.P. for an urgent referral but the rheumy may get it quicker if it is the same health authority or may know of one in the same hospital as them and can send a referral elecronically and also details of relevant scans, xrays and other tests that might be useful. If you have an understanding G.P. and a good relationship with them they should be able to help but it may just take a little longer, have a chat with them and see what they say.

Good luck and I hope you get a positive outcome of this,

Madmagz x