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  • Been diagnosed... is it a real diagnosis?? PLEASE HELP!

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    Old 03-23-2012, 09:25 AM   #1
    monsweet
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    Been diagnosed... is it a real diagnosis?? PLEASE HELP!

    Hi all, im new to the site and after some answers!! Ill tell you my history then tell you what happened this morning. Back in april 2010 i started with servere swelling in my left foor which got worse over a number of months, was passed pillar to post etc and had isotope bone scans which showed small inflammation to a bone in my left foot. I have extreme shooting pains sensitivity to that area, pain travels up my leg, i have shoulder pain along with at times terrible pains down my left arm, i also suffer with my right knee. My eye sight has deteriorated over the last 6 months too. after several appointments in neurogical hospital i have been diagnosed today with CHRONIC WIDESPREAD PAIN SYNDROME?? along with slight inflammation to the bone.
    My question is IS THERE SUCH A DIAGNOSIS???? A PERSON HAS SAID TO ME THAT SOUNDS LIKE A COP OUT TO ME BECAUSE YOU COULD HAVE TOLD THEM YOU HAD WIDESPREAD PAIN..........I NEED TO CLAIM DLA but need a firm diagnosis.........?????has anyone else got this diagnosis or heard of it before? 2 years iv been waiting for this diagnosis!!

     
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    Old 03-23-2012, 12:17 PM   #2
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    Re: Been diagnosed......is it a real diagnosis?? PLEASE HELP!

    First thing, welcome to the pain boards. Sorry you have a need to come to the pain boards.
    Yes your diagnosis is REAL. You will find out who your friends are in the short future. People who don't understand what you are dealing with jwill come up with all kinds of stupid comments.
    Good luck.

     
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    Old 03-23-2012, 01:42 PM   #3
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    Re: Been diagnosed......is it a real diagnosis?? PLEASE HELP!

    Quote:
    Originally Posted by Frederick123 View Post
    First thing, welcome to the pain boards. Sorry you have a need to come to the pain boards.
    Yes your diagnosis is REAL. You will find out who your friends are in the short future. People who don't understand what you are dealing with jwill come up with all kinds of stupid comments.
    Good luck.

    Ah thank you very much for your reply, It probably sounds strange me asking but i just hadnt heard of it before. now its just the matter of explaining it to my friends which i think will be the problem.

     
    Old 03-23-2012, 06:07 PM   #4
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    Re: Been diagnosed......is it a real diagnosis?? PLEASE HELP!

    Not to confuse you but it also sounds like it could be complex regional pain syndrome so I would look into that and see if it fits your symptoms.

     
    Old 03-24-2012, 12:52 AM   #5
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    Re: Been diagnosed......is it a real diagnosis?? PLEASE HELP!

    Quote:
    Originally Posted by Boxerluver View Post
    Not to confuse you but it also sounds like it could be complex regional pain syndrome so I would look into that and see if it fits your symptoms.
    Hi, thanks for that but the specialist I saw is a specialist in that area, I was refered to him because my original consultant suspected crps. But he says it's not :-/ x

     
    Old 03-24-2012, 12:02 PM   #6
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    Re: Been diagnosed......is it a real diagnosis?? PLEASE HELP!

    Quote:
    Originally Posted by monsweet View Post
    Ah thank you very much for your reply, It probably sounds strange me asking but i just hadnt heard of it before. now its just the matter of explaining it to my friends which i think will be the problem.
    Monsweet: If your friends are like the ones I used to have ,don't bother explaining it to them. They won't get it!

     
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    Old 03-24-2012, 01:01 PM   #7
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    Re: Been diagnosed......is it a real diagnosis?? PLEASE HELP!

    Quote:
    Originally Posted by Frederick123 View Post
    Monsweet: If your friends are like the ones I used to have ,don't bother explaining it to them. They won't get it!
    I have even found out today my closest family are the same. I have been in agony today and wondering whether stress can make things worse??
    I am 5''11 and over weight but not massively size 18uk and the way my family have treated me saying to loose a couple of stone and your symptoms will go and my health will get better etc etc i find it really upsetting. not once has a consultant ever said to me i am badly over weight and should loose it to get better, if that was the fact wouldnt they of said it??? if i could physically go for a run i would, i have been for a walk today with my 2 year old and i can barely walk now im in that much pain. im seriously at the end of my tether :-((

     
    Old 03-24-2012, 04:42 PM   #8
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    Re: Been diagnosed......is it a real diagnosis?? PLEASE HELP!

    Hi, ignore the weight comments a uk 18 at your height is not big. When people do not understand pain they have too find something to blame it on. Do not give them head space.

     
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    Old 03-30-2012, 03:03 PM   #9
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    Re: Been diagnosed... is it a real diagnosis?? PLEASE HELP!

    Hello I have had chronic pain sor several years due to back issues. It is hard to see but easy to feel. People just dont understand if they can not see a physical problem they assume you are fine. You should buck up, loose the weight, get moving and your body will feel better. It doesnt work that way and those who do not feel what you are feeling, that dont feel the pain that brings you to tears, the pain that messez with your psyc because you cant just get up and do what you should or what you want. They will think you are lazy, finding an excuse to sit around, not being 'real' with yourself. It is very hard and you will have to be very strong. Unfortunatly people are quick to judge and I was one of them beforeall this happend to me. You have to find a way in your own words to make them understand, find some compassion, or move on. It is a sad place to be and I hate it everyday of my life but there are a lot of great people on this board that can give great support. It is nice to habe a place like this to come to and vent read others stories and how they relate.

    You will always have an ear if you need to vent just let.me know I understand, I can feel you pain, desperation for justification and acceptance.

    Stay strong and know you pain is just another part of you to learn to manage, do not let it consume you, vent when needed, get good medical advice, and try to have a quality of life. My thoughts are with you.
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    Old 04-02-2012, 12:21 PM   #10
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    Re: Been diagnosed... is it a real diagnosis?? PLEASE HELP!

    Hi Sandy, So sorry to hear your feeling this way.

    Reardless of what you try to explain, their are some folks that just equate opiate use to addiction. Befor the late 90's every doc and nurse were tought the same thing.Longterm useof opiates is bad and only leads to adiction. I remeber when I first hurt my back I saw a well respected spine Ortho. His advice was wait untill it's absolutely unbearable and what I really needed to do was ecercise 3 or 4 days a week/ Walkd out knowing I had huge bulges and tears in disc impinging nerves. and all I need to do is excercie, Sure

    The real changing ponmt for me after 3 dailed surgeries 93, 96, and 99 left me bed wridden for a years. Surgeon discontinued the meds quick before that is was like begging for 20 viodin A WEEK TO KEEP FRFOM GIVING UP. He got tired of the requests, cut me off and referred me to the local med schools dept head of pain management took 10 weeks to get in to see her.. Her deal was acupuncture and anti D's. At least she admitted that she didn't think she could help me ans referred me to a program at anifferent hospital that had in and out patient pain management. So I went a month there, doing everything from art therapy to counseling, PT twice a day etc etc. Very structured. But their doc did use pain meds, It took from 93 to 2000 and 3 failed fusions to convince these docs, their methods just didn't help. That was the 3rd 30 day pogram I had done.

    I ended up changing docs because the director of the clinic wasn't in my network, clinic was, but not her private practiuce. She referred me to another clinic that had been their for years where they offered pretty much anything and everything interventionally, to SCS and pumps and med management along with an onsight shrink.. WE did modalities some I had done before, some I hadn't, but he put me on morphine, worked with me on the insurance switching me back between MScontin, Kadian and Methadone for a couple years. but soon meth was all I could afford. It ,ade ,e feel cappy, laxy, I would fall asleep and baically nod, It wasn't ptetty and not how I wanted to spend my life.

    The subject of the pump had come up several times over the last decade and I felt what to I have to loose. The frst trial failed miserablly do to a spinal fluid leak, But 6 months later I did another trial and it was succesful, I had surgery, healed, started working out, lost almost 40 lbs and returned to work part time under the ticket to work program.. SDSD doesn't make it easy, you can loose benefits if you exceed the max amount you can earn by 1 dollar in one e month. Right now that dolar amount is 720 nucks, Pretty pathetic but do have someone other than TV half ther day was such a blessing.

    But I truly have found that much of what I learnd in PM boot camps when opiates weren't used, and all the PT I had been through tought me to excercise without hurting myself and what to focus on.

    I can't explain what going back to any kind of work when you have been home bound for several years. It's an amazing feeling to interact with other adults, feel like you doing something productive and just covering my monthly medical expenses.

    Untill you decide to see things for all you sill have rather than all you have lost, thinking things will never change prevent you from changing or your life from changing.
    . It's baby steps, First you got to get walking, even if it's to do things someone else may gladly do for you, Then start walking outside, My phylosophy was i was really such a wrechk already, how much worse could I make it bby trying to regain strength and endurance.
    The absolute worse thing you can do for overall health is to be sedentary. I wouldn't wish that on anyone. My determing factor for the use of opiates is that it's perfectly safe if they don't impair you more than your physical condition. I hated the way LA orals made me feel, The head fog, nodding off, etc tec. I just felt drugged to get to a level of relief that I didn't want to end it. The pump seemed like a great opportunity because you don't have all the cognative effects of taking orals.

    I worked yesterday and am paying for it dearly, didn't sleep, hurt like a %%$^&* but I made decent money for 5 and half hours, had a lot of interaction with others and just fee llike Im a contributing member to society. I have no doubt you pain is real, I just wonder how much better you could make things trying to me more active. I can bearly sit still 10 minutes with the junkyard in my back so I know how much it benefits to tighten and stregthen you core, not to mention feeling strong from fdding dumbells into an aerobic workout.

    It's one step at a time, If you went to the gym tomorrow you would wreck yourslf. But how much worse would walking to the mail box make you feel. I truly believe those of us with good docs, are doing the best they can, sadly not enough explain how important it is for the patient to do all they can do to improve their own situatiom. Life is truly a glass is half full or half empty kind of thing when uyou through long term chonic pain into the equaltion. You ca ount our glessingg and work yo increase those or you spend you time thniking about all the negatives aspects, what you have lost, etc etc. Wouldn't those day be better served if you doul sneek a quick workout in and make the night special for a loved one. How you act given you circumstances are entirely up to you.

    Good luck, Dave
    Sorry bout spelling and grammer, slept aboutt 2 hours after work sitting up and haven't been able to lie flat and sleep yet.. But it's still worth geting out o the house.

     
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