Any ideas what to do with this?

I've been moaning about this for ages now! I have seen doctors and been told its a "mechanical" issue.

I found my back pain began almost 2 years ago without reason, just felt a bit tight and as if I needed to stretch sideways to release my back. Sort of like I'd squashed my lower spine into my hips and the sensation was/is very irritating! I would find it appeared more when moving around, not just running, walking as well and cycling.

First thing I did was go to my GP after a month of trying top stretch things out, she said it was musculoskeletal and gave me exercises to do, advised building up my core. All of which I did. It got worse. I went back after 14 months as I had given the back exercises a go and done everything I was suggested all to no avail. I was referred to a physio (NHS) who told me I needed to never run again and when I said I didn't think that was a realistic cure as it hurt when walking. He then suggested Pilataes classes for 6 sessions which I did, they made it hurt more as lying on the floor REALLY hurts! I didn't find the pilataes helped what so ever and my core strength really isn't that bad.

So I was sent back to my GP who on my request, sent me to a rhuematoild doctor. I was told I have osteoarthritis in my knees last year and wondered if that was the same in my back. I also have a hypermobile spine and have heard it puts me ar risk of OA. The doctor first refused to entertain my theory but on my plea ran tests. They ran an MRI and told me no, it was not OA, they did a bone scan but my bones have not gotten any worse and there is nothing showing up on a DEXA bone-scan and I had blood tests which showed my bloods (vitamin D, liver and bone) were all within normal range.

I am now at a loss as to what to do, the types

Comments

  • So at the moment, I have been told I have a musculoskeletal/mechanical back pain issue which no one has any answers for.

    I have been given exercises which make things worse; I said this to the doctors (GP and Rhuematoid doctor) but they just shrug their shoulders. I am on too many pills and do not understant why I have to wait and watch for this to get worse. -Though even if this gets worse there is no sign anything else will happen to help!

    I have wondered about the MRI being looked at my another person. They took an MRI of my leg before the stress fracture and it came back all fine, it was only when the orthopedic doctor looked at it himself he could see it was not fine, it was inconclusive because of the swelling. He then pushed for another scan. I asked the Rhuematoid doctor to get a second opinion on the scan but the (student) doctor told me it had already been seen by a specialist and that it didn't need a second opinion. Am I entitled to ask for someone else to look at the scan? And if so, being that I am now discharged, how do I do this?

  • PSCPSC ✭✭✭

    ask your GP how to do it would be my first call...

    or go private (but that's clearly going to be expensive).

    You need a specialist...  I would be amazed if anyone on here has the diagnosis.

    Good luck...  sounds aweful.

  • jennn - email me at andydubois@hotmail.co.uk - I cant help you but I know a few people who should be able to depending on where you are located
  • Hi Jennn,

    I agree with PSC in that you should be able to access your scan though the GP. They may be able to give you a copy on CD that you could take to someone (probably privately) for a second opinion. It's hard to get a second opinion on the NHS. Sometimes a consultant will involve a fellow consultant for this if you ask them to but they might be reluctant to do so.

    Where are you based? I may know someone local to you to see.

    Backs are complex. Scans are helpful but also can be misleading. For example around 50% of people have a disc bulge on a scan but with no pain. Lots of people with severe pain have no changes on a scan. They are useful for ruling out serious problems (e.g. fractures, tumours, spinal cord compression) but beyond this they have their limitations.
  • I run a back pain management service in Brighton. In that we see how complex pain can be and how hard it is to treat. It isn't just about exercise and strength it's also about pacing yourself. Often people are desperate to get better and push themselves with exercises and find they get worse. The challenge is to find an amount of exercise you can do without it aggravating your pain. This applies to daily activities too.

    It's easier said than done though and it isn't the only factor. If you find a physio who is experienced in managing backs and isn't anti-running they should be able to help you improve.
  • I've had an MRI, thats come through fine already. I had wanted to get a second opinion on the scan but the student doctor refused saying "it was already seen by a radiologist" but yet when I had an MRI on my leg a year ago, that came back as fine but when the doctor himself actually looked at it, it showed the whole leg inflammed and it wasn't possible to see anything- turned out on that occasion it was a stress fracture which was my arguement for a second opinion but the student rhumatoid doctor refused.

    I have also had a Dexa bone scan which shows weakend bones but they haven't gotten any worse since the pain began but the pain has worsened.

    I have seen a sports massage person before as a volunteer for a clinic and they decided it was in the sacreatic joint (if I've even spelt that right!) but didn't know what it was and as they can't see inside of me would not have been able to diagnose either. I had thought it was a joint issue being that it hurts to move or when I am in certain positions but apparently not. What they did say (the sports massage students) was that my lower back and bottom muscles were very very tight as were my quads possibly as a direct result of whatever the problem is. I stretch regularly and in the areas I've been suggested, been doing that even before it began yet its not made any difference what so ever (hence me thinking it was a joint issue).

    My problem is its not showing up on those scans yet drives me mad and hurts a lot at night. I have no idea what it is which makes me worry as well as it hurting...I don't know how to stop this thing getting worse or go back to running properly if I don't know what it is. I had wanted to see a private physio but to put it mildly, huge hige debt, low low low wage and no way to save as a result.

  • Tom Goom wrote (see)
    Hi Jennn,

    I agree with PSC in that you should be able to access your scan though the GP. They may be able to give you a copy on CD that you could take to someone (probably privately) for a second opinion. It's hard to get a second opinion on the NHS. Sometimes a consultant will involve a fellow consultant for this if you ask them to but they might be reluctant to do so.

    Where are you based? I may know someone local to you to see.

    Backs are complex. Scans are helpful but also can be misleading. For example around 50% of people have a disc bulge on a scan but with no pain. Lots of people with severe pain have no changes on a scan. They are useful for ruling out serious problems (e.g. fractures, tumours, spinal cord compression) but beyond this they have their limitations.


    Thanks- its good to hear scans can miss things- I am feeling worried my GP thinks I'm somewhere between a hyperchondriac (I have been moaning about this to her for 2 years) and being OTT about something pretty minor. Its bad enough to lose me sleep and affect my exercise, there are some things I just cannot do anymore. Swimming for example, some yoga poses, cycling hurts but after cycling it kills!...

    I am in London, but problem is I can't afford anyone, hence me trying to find out what the problem could be by myself. Someone suggested F.I but apparently this would show bone spurs and there were no bone spurs on my scan.

  • RicFRicF ✭✭✭
    I used to have a problem with the Parathyroid glands. Medics call the symptoms moans, groans and stones. Parathyroids are NOT thyroids, those do something different. Parathyroids regulate the calcium levels in the blood by adding and subtracting from the bones as required. When they go wrong, they bugger up your muscles to some extent, affect the joints and make you slightly depressed. Vague symptoms but nothing you can really pin down. Blood test job. My condition was discovered via a research project by accident, osteoporosis study. My own GP had never come across a case until then but found four more cases once he was alerted to the condition.

    🙂

  • RicF wrote (see)
    I used to have a problem with the Parathyroid glands. Medics call the symptoms moans, groans and stones. Parathyroids are NOT thyroids, those do something different. Parathyroids regulate the calcium levels in the blood by adding and subtracting from the bones as required. When they go wrong, they bugger up your muscles to some extent, affect the joints and make you slightly depressed. Vague symptoms but nothing you can really pin down. Blood test job. My condition was discovered via a research project by accident, osteoporosis study. My own GP had never come across a case until then but found four more cases once he was alerted to the condition.
    RicF wrote (see)
    I used to have a problem with the Parathyroid glands. Medics call the symptoms moans, groans and stones. Parathyroids are NOT thyroids, those do something different. Parathyroids regulate the calcium levels in the blood by adding and subtracting from the bones as required. When they go wrong, they bugger up your muscles to some extent, affect the joints and make you slightly depressed. Vague symptoms but nothing you can really pin down. Blood test job. My condition was discovered via a research project by accident, osteoporosis study. My own GP had never come across a case until then but found four more cases once he was alerted to the condition.

    Thats really interesting- I have osteopenia (the early stages of osteoperosis) and also take calcium pills daily (1500mg) with vitamin D3 which by most peoples estimations, is a large amount as so few take in the recommended amount.

    I have had a blood test though and one that looked at my calcium levels as well as hormones and liver function. I was told that everything was fine but do not have the results to see myself. I wouldn't have a clue what I was looking for anyway though! I could ask my GP but doubt they'd even have a clue what they were looking for either- or why.

    Apparently everything on my blood test was fine though and that was done about a month ago following symptoms of chronic depression and insomnia (though in all fairness, I'd been burgled, found out my grandmother both had Cancer and then died 5 days later- very fast and even more so sad, she was too young...) so I was within my rights to feel as bad as I did but having a low mood wasn't a new thing, I just tried to ignore it and push on until it got overwhelming when everything kicked off.

    I think what I will do is read a bit about the condition and then go back to my GP and ask them. I tend to do things like this (go and ask about specific conditions) because if I go along and just point to what hurts, I end up with somewhere between "its nothing" to being "what would you like me to do about it?" Which is no help to be as I am not a Doctor and don't have a clue what makes the problem go away!

  • RicFRicF ✭✭✭
    Worth a read for sure. I was undiagnosed for 30 years since I can almost point to the time when my concentration failed and a kind of fog filled my head. As a kid I was a top of the class in everything sort, total clarity of thought. Anything I saw, heard or read I remembered, total recall. Went to a Grammar school top and came out bottom. On friends re-united I saw guys who were professors, top medical consultants, city accountants and barristers. And to think that when I was 12 years old I thought they were thick.

    🙂

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