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Old 12-11-2011, 12:29 AM   #1
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not sure whats wrong anymore ???

hi everyone, i havnt posted in a good while but iv been reading and keeping an eye on how everyone is doing. i hope all are as painfree as possible and all surgeries went well. i have 3 kids a 12 yr old and a 2 yr old and and an 18 mth old so i dont have much time to spend on the computer anymore. iv suffered with chronic back and leg pain for over 10 yrs now and am no closer to any answers.the last time i posted i was due to see the neuro-surgeon as my doctors couldnt do anymore to help. that trip was a bit of a disaster as when i got there my mri scans and xrays and notes had not been forwarded from my doctors so i didnt get to see the topman. i saw his registrar and she checked me over and took my history. it then took 2 months for them to receive all my files . they have now ordered a full spinal mri, a pelvic mri and a brain mri to try get to the bottom of this. my mris are not till feburary so im just trying to hang in till then.
iv been in really bad pain since sept, pain is non stop in my lower back and 2 legs, i now have pain in the rest oof my back and neck too. still have all the numbness, tingles, electric shocks, feeling of water running down legs etc. my legs can shake from time to time and had a couple of weeks where i started falling again, i have a lot of balance issues lately too. i now take oxycontin extended release and oxynorm for break through pain on top of all my other tablets and am still in pain all day every day.
im also having a lot of problems with my stomach, pains, trouble eating,trouble swallowing, throat problems, headaches, im exhausted and my memory is shot.iv lost 2 stone and im not overweight. my bloods came back my white blood count was high and my iron was very low, the iron was ok on the 2nd lot of tests but white blood count still high. my dcotor and the neuro- surgeon are talikng of sending me to a rheumotologist and a pain psycologist to try get some answers but they want to wait till the results of the mris come through. im only 35 and feel like im 90, i keep fighting i try to do what i can i dont give in to the pain, i still do all i can at home to look after my family they are what keep me smiling. but its getting harder every day i fight depression daily. i have no social life cant work or drive, i just get by on a day to day basis. thanks for listening, sorry its so long, any help suggestions would be great. take care, shelsers

 
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Old 12-11-2011, 09:51 AM   #2
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Re: not sure whats wrong anymore ???

Hi shelsers,

I'm happy to see you posting again, but am so sorry you are having so many issues. Severe pain can cause a cascading effect, causing symptoms in various body systems. I cannot even imagine having to wait so long to get a MRI. If I have to wait over a week, I am annoyed.

In the NHS are you able to get copies of your tests like MRIs, etc? I always advise patients to request copies of all written reports, test results, copies of X-rays, MRIs, etc. as you never know when you may need them quickly.

Sometimes what happens is the pain itself begins causing issues and more pain, as the brain itself gets wired and no longer processes the real pain signals properly. I imagine it is for this reason that a pain psychologist has been suggested to you. It doesn't mean the pain is "in your head" (as in, you're making it up).

I cannot begin to guess what all is going on with your spine...but I can imagine that by this time, stress is playing a part in all of this. I am not the kind of person who goes for a lot of "new age" concepts, using meditation, CDs to resolve all issues, etc., but before my last surgery (which I regarded as my last chance to resolve my pain issues) I bought a couple CDs that were designed for people facing serious surgery. One was actually researched and tested at Harvard University on patients facing and undergoing surgery, with very positive results. I only thought to do this 2 weeks before my surgery so I didn't have long to listen to it. I put it on as I was going to bed, and fell asleep listening to it. I can't say if it was just coincidence that I breezed through surgery, had little pain, and made a quick recovery, but compared to my other two surgeries it truly seemed miraculous to me!

I would suggest you find something similar for relaxation and pain management and start listening to it either when you can, or as you are falling asleep....some of the suggestions sink in even when you are asleep.

You need to somehow break the cycle as you are waiting to find out what physical issues are causing your symptoms.

 
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Old 12-11-2011, 10:20 AM   #3
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Re: not sure whats wrong anymore ???

H ave you been tested for rheumatoid arthritis? I don't know much about it, but you might want to do some research so you can ask the doctors about it. I know one symptom is the high white blood cell count, and it might explain some of the issues with your spine.

 
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Old 12-11-2011, 11:50 AM   #4
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Re: not sure whats wrong anymore ???

So sorry to here that you are experiencing a lot of pain. I too am having joint and back pain and was hospitalized with a high white count, crp count and rh factor. If I have another attack I will be seeing a Rheumy. It often takes a very long time before a final diagnosis of RH arthritis is made. The only thing is RH does not usually affect the lower back and you do not speak of any other joint involvement. Obviously from your blood work there is some kind of inflammatory process going on. Hopefully you will get some answers soon so that treatment can progress.
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Old 12-12-2011, 12:49 AM   #5
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Re: not sure whats wrong anymore ???

thanks teri and pooby, the neuro-surgeons office did; take bloods to check for inflammation she thought maybe this might be linked to my pelvis(.'which i damaged 12 yrs ago having my 1st son wasnt discovered for 10 yrs). she said i was very slight and wondered should i have had 3 natural births. i did have a pelvic ultrasound in hospital last year but that was all clear. i try relax and not get too wound up about the pain as i know it only makes things worse, luckily im a very upbeat and happy person so i try stay that way as much as i can. my nanny had severe osteoartritis (spelling) and she seemed very interested in this. i have looked in to ra and while i have some symptoms i dont have them all but i do suffer terribly with sweats and fevers, my doctor thinks it might be medication and i wonder are half my problems from all the meds too. i try to take as little as i can but they help me look after my family so im not stuck lying down all the time so im grateful for that. i appreciate your advice and i will look for the cds teri as they seem like a good option to help me relax. well today is my birthday im 36 yrs young lol, so im going to smile and laugh and enjoy the day. take care, shelsers

 
Old 12-12-2011, 05:30 AM   #6
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Re: not sure whats wrong anymore ???

Having a positive attitude can carry you a long way. I hope you have a wonderful birthday...I barely remember turning 36! I hope you can enjoy the day, despite your pain.

 
Old 12-12-2011, 05:44 AM   #7
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Re: not sure whats wrong anymore ???

Even though February seems like a long way off, especially when you're in pain, the time will pass quickly. Hopefully you will get some solid answers after you get your MRIs.

This may all be tied into your pelvis, depending on whatever damage you sustained, and whatever happened afterward. Pelvic floor issues can mimic the same symptoms as lower back pain...and many back doctors are beginning to recognize this.

 
Old 12-12-2011, 06:54 AM   #8
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Re: not sure whats wrong anymore ???

I keep having these random thoughts for your consideration. I was thinking more about your pelvic issues and the symptoms you mentioned, and I'm thinking SI joint dysfuction. Please do some reading on this topic -- it would explain many of your symptoms.

You might want to look online for a sacroiliac belt and give one a try. It might provide enough support that it would help with your pain until you get in to have the imaging in Feb. It is a narrow band that wraps around the low hip area and closes with a velcro closure that you wear under your outer clothes. It helps any time you are on your feet...and the good thing is, it won't cause any harm.

 
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