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mocca

Original Poster:

93 posts

24 months

[news] 
Thursday 9th August 2012 quote quote all
Hi all, kind of at the end of my tether here re the above.

Three years ago I was a healthy 23 year old but had a fateful event in the gym deadlifting after a period out put paid to that. The pain soon changed to a weakness in the legs and a literal pain in the neck.

Over the years the pain, joint pain including pelvis knees and ankles has worsened unbelievably, as has my ability and strength. my joints and back crack profusely. I suffer from huge fatigue as a result and am barely holding down a job or my impending marriage as a result.

I've chased diagnosis/treatment- osteos, physios, Chinese meds including accupuncture, a orthopaedic surgeon early on, a couple of rheumatologists and pain clinics.


All that has surfaced is an impingememt at l5 s1. And no one has offered any help apart from offering me some pregabin to calm the pain which I can not live or sleep without.

I am seeing a neurosurgeon privately at the moment, my last throw of the dice before I'm completely immobile I guess. Does anyone have any experience of dealing with them that could perhaps help me? Whenever I am examined, doctors have previously ignored my pleas and have said I appear fine.

K77 CTR

1,020 posts

51 months

[news] 
Thursday 9th August 2012 quote quote all
I don't know enough about it but ankylosing spondilytis would cause all those symptoms and you're the right age and sex for it.

Zad

8,707 posts

105 months

[news] 
Thursday 9th August 2012 quote quote all
Could it me that the original injury has lead to chronic fatigue syndrome in one of its forms? I seem to remember that chronic muscle and joint pain are symptoms.

http://en.wikipedia.org/wiki/Chronic_fatigue_syndr...

It is one of those things that is phenomenally difficult to diagnose and chase down, not helped by the "we can't measure anything therefore nothing is wrong" attitude of some medical people.

mocca

Original Poster:

93 posts

24 months

[news] 
Thursday 9th August 2012 quote quote all
I've been tested for AS and that came back negative.

I think that chronic fatigue is undoubtedly at play here. I've never heard of someone suffering such widespread pain and disability from what seemed such a simple injury.


Red 4

1,355 posts

56 months

[news] 
Thursday 9th August 2012 quote quote all
Finding the cause of back pain can be very difficult. Especially low back pain. To be honest even the experts may not be able to pin-point the exact origin. There is so much stuff down towards the base of your spine that it could be any number of things (at least that's what I've been told by more than a couple of orthopaedic surgeons).

Have you had an MRI scan ? Even this may not diagnose the cause but it's worth a try.

I've had serious back problems for 14 years (spinal injury) and I understand the level of pain you describe. I've seen numerous specialists and the best they can come up with is "non specific low back pain". I have a sacro-iliac joint dysfuction which is part of the problem. This may account for some of the symptoms you describe.

Unfortunately it might be a case of simply managing the pain.
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mocca

Original Poster:

93 posts

24 months

[news] 
Friday 10th August 2012 quote quote all
Thanks for the responses. The MRI has only shown an l5 s1 slip.

My rheumatologist advised me that it could not be causing all the pain in my legs. This was the last investigation I had prior to the neurosurgeon I'm seeing at present who will give his own interpretation on the scan.

Alternatively a friend who is a physio thinks that it could be causing my problems, and the joint pain and leg pain caused by nerves not firing the messages to my legs thereby placing greater strain on the joints.

All I know is that the condition is so rapidly getting worse, andthat my body does not tolerate any form of the slightest bit of exertion/exercise.

dreamer75

996 posts

97 months

[news] 
Friday 10th August 2012 quote quote all
I had herniation at L4/5, and eventually got to the point the disc was pretty much gone, and the bones made holes in each other rubbing togehter.

As a knock on from that, various muscles just sort of stopped working properly. Physio's opinion was that the pain can stop nerves firing/muscles working etc. Then other muscles which aren't designed to do the job have to over-work to compensate.

I would get pains all over the place; my stomach, sides, ribs, legs, feet - all over the place.

At first we corrected an SI issue (using a belt, and doing a lot of strengthening work on my core, and physio to release the seized joint every week) and that's fine now. Then since a fusion op in January (5-6 years after the initial problem) and a lot of strengthening work and pnysio, gradually the other pains are going, as the muscles start working properly. I''m having to re-learn how to do stuff, as I've got used to doing them all wrong.

The main remaining pains are a bit of an ache in my back, and leg issues due to nerve damage from the op, but overall it's much improved and I'm not fully recovered yet.

So in a long winded way, what I'm saying is, potentially yes you could be right and it's all linked!!

mocca

Original Poster:

93 posts

24 months

[news] 
Friday 10th August 2012 quote quote all
Gives me hope that surgery and physio might be a (even at least partial) way out of this dreadful situation. I am absolutely dismayed at the time it takes to get physio on the NHS though.

I too have suffered over the past 2.5 years of parts of my body effectively just switching off, particularly around the leg and trunk area, especially after attempts to exercise as I am an exercise addict and get really infuriated where the amount I can do gets less and less, and I eventually am turning into a fat blob! I really have reached the stage now where even very lightly swimming a length will really adversely affect my health.

Cheib

6,213 posts

44 months

[news] 
Friday 10th August 2012 quote quote all
If you are near London I know a fantastic Osteo.....he treats a lot of world class athletes (used to be an athlete himselfa and still coaches) including U Bolt esq. Appreciate you've been down that road before but he's very,very good.

Panda76

1,015 posts

19 months

[news] 
Sunday 12th August 2012 quote quote all
Osteopath treatment and changing my work activities has helped me.
I have 2 slipped discs of which the lower one is just a leaky mess.
Keeping on the move at work has done wonders for my back strength.I dont get pain anymore,at it's worst I couldnt walk and my right leg and side of my foot would be tingling and numb.It came close to costing me my job.


I have also seen a consultant who is going to be giving me caudal epidural injections as a precaution.I wont lie to you,it has taken almost 12 months to be on the right track rectifying this.You have to push and push to get what you want from the nhs,its depressing.

The osteopath I used was very good,around 40 quid per session.Physio did nothing for me,traction made me worse.

You can get better.You will get better but you will have to be very careful what you do with your back now.I have a new found respect for mine,you only get one and it cant be replaced.

mocca

Original Poster:

93 posts

24 months

[news] 
Sunday 12th August 2012 quote quote all
I do have hope, but where I've got weaker and weaker over the past 2.5 and pain and joint problems have also got worse, it is filling me with the heaviest dread. It has all but completely ostracized me from my friend groups and in really fearful of the work situation as I'm clinging on for dear life.

I am hobbling about because I have lost so much strength in my legs/trunk area.

I looked through my previous mri and the only mention of anything adverse is a central prolapse at l5s1.

Has any one had experience of a discogram?

mocca

Original Poster:

93 posts

24 months

[news] 
Sunday 12th August 2012 quote quote all
Oh and this should have some resonance with ph, I've been given a new mx5 for the week and can't enjoy it because of the pain turning corners and the force required for the major controls frown

dreamer75

996 posts

97 months

[news] 
Monday 13th August 2012 quote quote all
Yes I had a discogram. After the discectomy in 2010 the pain reoccured, and it was the final step before a fusion op, to prove it was definitely the disc causing the pain. (BTW the op was originally planned to be an ADR - disc replacement - but due to poor condition of the bones it wasn't possible. Worth investigating potentially though).

I don't remember a thing! I remember being wheeled into the operating theatre, then I "woke up" half way through a conversation with a nurse. They gave me some sort of drug that sedates you (but you are still awake) but also kills the memory somehow :s

Plus they injected local anaesthetic in, so for a few days afterwards, I had a fair bit of relief!

The physio I use, uses a combination of treatments; acupuncture type needs, K-tape, manipulation, exercises & stretches, etc. etc. and I found that worked the best - rather than having to pick "discipline" I got the best of all worlds !

mocca

Original Poster:

93 posts

24 months

[news] 
Monday 13th August 2012 quote quote all
dreamer75 said:
Yes I had a discogram. After the discectomy in 2010 the pain reoccured, and it was the final step before a fusion op, to prove it was definitely the disc causing the pain. (BTW the op was originally planned to be an ADR - disc replacement - but due to poor condition of the bones it wasn't possible. Worth investigating potentially though).

I don't remember a thing! I remember being wheeled into the operating theatre, then I "woke up" half way through a conversation with a nurse. They gave me some sort of drug that sedates you (but you are still awake) but also kills the memory somehow :s

Plus they injected local anaesthetic in, so for a few days afterwards, I had a fair bit of relief!

The physio I use, uses a combination of treatments; acupuncture type needs, K-tape, manipulation, exercises & stretches, etc. etc. and I found that worked the best - rather than having to pick "discipline" I got the best of all worlds !
Glad to hear that you are on the up.

My situation just feels like it has gone from bad to worse, to critical! It really is giving me such a low quality of life so I hope the neurosurgeon has something to offer that will at least improve my quality of life.

Was so depressing watching mates play football yesterday and barely being able to coordinate myself when the ball came to me, because my legs are so weak frown

dreamer75

996 posts

97 months

[news] 
Monday 13th August 2012 quote quote all
Believe me it's not all plain sailing frown And I had years of issues in the run up to the surgery - I have a fair few residuals and can totally empathise !

I can now stnad up for more than 5 minutes at a time, so I've been able to go to a couple of "days out". But I got in the Caterham on Saturday for the first time in a year (!!!) to see if I could even sit in it, and my feet are so jerky that throttle control is somewhat interesting.

But at least I can sit in it I suppose !

When things are bad it is very depressing (properly) and it gets hard to cope. I watched almost all of my 30's disappear (I'm 37 this year) and it's horrible. Now I'm facing the fact I'll never do some of the things I took for granted, but I would swap that for pain free and being able to do most "normal" stuff !

Persevere for a diagnosis and remember there is a light at the end of the tunnel!


mocca

Original Poster:

93 posts

24 months

[news] 
Monday 13th August 2012 quote quote all
Ah, those inescapable dark moments...

Physio and any form of physical exercise only seems to exacerbate things at the moment so it literally is like having my life on hold until my case progresses with the neurosurgeon http://www.londonbridgehospital.com/LBH/consultant...

dreamer75

996 posts

97 months

[news] 
Thursday 16th August 2012 quote quote all
Have you tried acupuncture for pain relief? My physio used needles on me a few times - when the physios use them it's a combination of getting deep muscle spasms to try and release, and some of the pain relieving pressure points?

Might work (didn't help me much but did help a little bit)?

smartypants

17,356 posts

38 months

[news] 
Thursday 16th August 2012 quote quote all
K77 CTR said:
I don't know enough about it but ankylosing spondilytis would cause all those symptoms and you're the right age and sex for it.
I have this. It's a bit of a fker. However at that age and that early I can't believe he'd get all those symptoms, and you don't get them over a prolonged period - you go through "crisis" stages.

It can be partially diagnosed by a simple bloody test, 95% of people with AS also have the HLA-B27 marker. Go ask your doctor - at least rule it out.

EDIT: Should read the whole thread! OK cool, you dodged a bullet there I can assure you smile

mocca

Original Poster:

93 posts

24 months

[news] 
Thursday 16th August 2012 quote quote all
smartypants said:
I have this. It's a bit of a fker. However at that age and that early I can't believe he'd get all those symptoms, and you don't get them over a prolonged period - you go through "crisis" stages.

It can be partially diagnosed by a simple bloody test, 95% of people with AS also have the HLA-B27 marker. Go ask your doctor - at least rule it out.

EDIT: Should read the whole thread! OK cool, you dodged a bullet there I can assure you smile
I can assure you I've dodged no bullets!

Really finding it hard to get through the days, such is the weakness/lack of dexterity/fatigue.

smartypants

17,356 posts

38 months

[news] 
Thursday 16th August 2012 quote quote all
mocca said:
I can assure you I've dodged no bullets!

Really finding it hard to get through the days, such is the weakness/lack of dexterity/fatigue.
No, I am sure you haven't. Not knowing what is wrong has to go be pretty stty.

Hope you get it sorted soon!
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