Discussions By Condition: I cannot get a diagnosis.

Chronic back hip and leg pain unable to walk

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: faulknerp
  • August 18, 2010
  • 06:03 PM

Hi,

I am posting here on behalf of my girlfriend who is 29 years old. For about 5 years now she has had pain in her back which about 4 years ago spread to her legs and hips. The pain got so severe that around 5 months ago the pain management team injected cortisone into her lower back.

This has made the problem much worse. Previously she was able to go out every now and again for up to around an hour, but now she is totally housebound and unable to do anything. She needs crutches to walk and we have now had to buy a wheelchair for her.

She's had MRI, blood tests, xrays... all the medics can tell her is that she has a "mechanical back problem" which they think was caused by a fall when she was 12 years old but there's no evidence of this on the scans.

She also suffers from crohn's disease which we think may be related to the problem but this seems to have been dismissed out of hand by the medics.

I am growing very concerned that the problem seems to have got worse over the last year in particular, especially after the cortisone injections.

Does anyone know what this may be, and if so can she expect any improvement or does she need to be prepared for this is how it is for the rest of her life? It's soul destroyng to see her like this, she's a very strong person mentally but it is now starting to creep away at her now which is understandable.

She's now on pregabalin, amitriptyline and tramacet but it's making no difference really.

Any help is really appreciated. Thank you so much.

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5 Replies:

  • Hi, I am posting here on behalf of my girlfriend who is 29 years old. For about 5 years now she has had pain in her back which about 4 years ago spread to her legs and hips. The pain got so severe that around 5 months ago the pain management team injected cortisone into her lower back. This has made the problem much worse. Previously she was able to go out every now and again for up to around an hour, but now she is totally housebound and unable to do anything. She needs crutches to walk and we have now had to buy a wheelchair for her. She's had MRI, blood tests, xrays... all the medics can tell her is that she has a "mechanical back problem" which they think was caused by a fall when she was 12 years old but there's no evidence of this on the scans. She also suffers from crohn's disease which we think may be related to the problem but this seems to have been dismissed out of hand by the medics. I am growing very concerned that the problem seems to have got worse over the last year in particular, especially after the cortisone injections. Does anyone know what this may be, and if so can she expect any improvement or does she need to be prepared for this is how it is for the rest of her life? It's soul destroyng to see her like this, she's a very strong person mentally but it is now starting to creep away at her now which is understandable. She's now on pregabalin, amitriptyline and tramacet but it's making no difference really. Any help is really appreciated. Thank you so much.Let her lie down on her back and lift her legs and raise them and rest them on the seat a chair kept below her legs. This may stretch the spine and give her less pain. If her weight is above 45 then -She has to avoid all solid food and stay on soups- liquid food, for atleast 3 days and if possible avoid all medicine except the important ones- always do it consulting yr doctor! I am not a doc. But I am a naturopath,yoga man. Try this. God bless you, you will be alright in two weeks, if you change your eating habits, drink more fruit juice, give enema to cleanse your intestine...Best,param
    Anonymous 42789 Replies
    • August 18, 2010
    • 06:34 PM
    • 0
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  • This sounds very much like a type of arthritis called ankylosing spondylitis which is characterised by teriible back pain (lower back) and can also effect other joints like hips, knees, elbows etc. It is also linked to bowel disorders like Crohns. It is tricky to pin down but key symptoms are - pain in lower back - damage to sacroiliac joints which cannot always be picked up on xrays - other inflammatory conditions such as crohns, iritis - raised levels of plasma and CRP readings in blood which indicate inflammation - the gene HLA B27 is normally present in suffers. If you search the web you will find lots of info and seeing a rheumatologist might be your next step. My husband has AS - and was in the same position as your wife 3 years ago. He's now doing the house work while i write this mail! There is hope - good luck. Hi, I am posting here on behalf of my girlfriend who is 29 years old. For about 5 years now she has had pain in her back which about 4 years ago spread to her legs and hips. The pain got so severe that around 5 months ago the pain management team injected cortisone into her lower back. This has made the problem much worse. Previously she was able to go out every now and again for up to around an hour, but now she is totally housebound and unable to do anything. She needs crutches to walk and we have now had to buy a wheelchair for her. She's had MRI, blood tests, xrays... all the medics can tell her is that she has a "mechanical back problem" which they think was caused by a fall when she was 12 years old but there's no evidence of this on the scans. She also suffers from crohn's disease which we think may be related to the problem but this seems to have been dismissed out of hand by the medics. I am growing very concerned that the problem seems to have got worse over the last year in particular, especially after the cortisone injections. Does anyone know what this may be, and if so can she expect any improvement or does she need to be prepared for this is how it is for the rest of her life? It's soul destroyng to see her like this, she's a very strong person mentally but it is now starting to creep away at her now which is understandable. She's now on pregabalin, amitriptyline and tramacet but it's making no difference really. Any help is really appreciated. Thank you so much.
    Anonymous 42789 Replies
    • August 23, 2010
    • 11:05 AM
    • 0
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  • Thanks very much. We're also thinking that this sounds like some kind of arthritis. The rhematologist we saw did a blood test for crohn's spondyloarthropathy and came back negative, I am not sure if this is the same blood test or not. We're going to see a different rhematologist who specalises in back pain and crohn's disease so we're hoping that we can get somewhere. The NHS here in the UK have no idea how to deal with this at all and keep on pumping her full of cortisone injections which do nothing apart from making it worse, they have no intention of trying to diagnose the problem. The NHS seem to be OK at serious life threatening conditions, but things like this they have no knowledge or not prepared to spend the time looking into it. Many thanks for your kind words, I am sure if we keep on searching we can find something that may at least make her life a bit more bearable at least. Thanks. This sounds very much like a type of arthritis called ankylosing spondylitis which is characterised by teriible back pain (lower back) and can also effect other joints like hips, knees, elbows etc. It is also linked to bowel disorders like Crohns. It is tricky to pin down but key symptoms are - pain in lower back - damage to sacroiliac joints which cannot always be picked up on xrays - other inflammatory conditions such as crohns, iritis - raised levels of plasma and CRP readings in blood which indicate inflammation - the gene HLA B27 is normally present in suffers. If you search the web you will find lots of info and seeing a rheumatologist might be your next step. My husband has AS - and was in the same position as your wife 3 years ago. He's now doing the house work while i write this mail! There is hope - good luck.
    faulknerp 1 Replies
    • October 4, 2010
    • 09:07 AM
    • 0
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  • I would also say it could possibly be ankylosis spondotitis,It sounds similar to my symptoms.Ask your doctor to check for B27 in a blood test. If you are positive, it still may not be AS, but maybe.When i was at my worst:a super light tap on the hip would drop me to the floor.that was on the days i could lift my legs over the side of the bed or even walk.If you have AS they will probably try 20 different drugs on you until they find one that works. It took me 20 prescriptions over 12years. I found the drug HUMIRA, and it changed my life in 2-3 days.I am now a superhuman. or at least feel that way.PUSH THE DOCTORS EVERY TIME YOU SEE THEM.MAKE SURE THAT THEY ARE ACTUAL TRYING TO FIX YOU.GET SPECIALISTS.SEE EVERYONE YOU CAN TILL ITS FIXED.
    Anonymous 42789 Replies
    • January 28, 2011
    • 11:19 PM
    • 0
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  • Chron's disease disrupts the gastrointestinal permeability barrier and allows entry of possible pathogens into the surrounding tissue. This causes an immune response that can cause swelling of the lower spine and sacroiliac joint. I have both inflammatory bowel disease and ankylosing spondylitis and due to the inadequate health care that I was receiving I decided to do a degree in microbiology which I am near completing. I have suffered several bouts of severe loss of mobility which I have successfully recovered from using antibiotics that target Enterobacteriaceae (bacteria that include E.coli and Klebsiella). If your friend has not had prior use, I would suggest the use of a macrolide antibiotic such as clarithromycin. Other antibiotics to consider are cefixime and trimethoprim.
    Anonymous 42789 Replies Flag this Response
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