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Patient Zero

Feb 14, 2015 11:07 AM

So i finally have all the info and when I go on the computer later today I'll post I'm here about it (it will be a very long read sorry) this so far is just to remind me to post

Feb 14, 2015 11:16 AM

Will be back later to catch up Reece

Feb 15, 2015 8:22 PM

Me too. And prayers going up still

Feb 16, 2015 4:08 AM

Okay my pain is down enough fo me to do anything yay! (sarcasm) 9/10 pain is sooooooo great.

Anyway...Patient zero

So, they still don't know what i have so they've given me the most condescending diagnosis in the world (NSLBP with deconditioning). So at the moment I have to use a wheelchair nearly all the time. I can only walk 10 Meters at most and that is using crutches. So essentially I only walk to the bathroom and to the car,

So my paediatrician (unfortunately not a pain doc wish she was), found a loop hole in the care system of the NHS. That being that people in my position do not get any more treatment so were stuck herewith no physio etc. etc.

So she (who also teaches doctors up and down the UK), decided that she wanted to set up a new service for me and people like me with me being... PATIENT ZERO A.K.A. The Guinea Pig (as she calls me)

I loved this and it gives me the opportunity to help others (if it works, they'll let patients send me letters so i can support them) and to improve the service but if it doesn't work I don't know if they will continue the service. Also, if it doesn't work i will be P**sed off because this is my last chance at getting better no one else is giving any other treatment (ill make another thread about the 2nd opinion). So i'm going to go through 2 weeks (with the weekend at home) of grueling, paralyzing pain and.... yeah

if you have any questions ask away

Feb 16, 2015 4:10 AM

By the way NSLBP with deconditioning is a fake diagnosis because it stands for Non-Specific Low Back Pain with muscle atrophy but a) it doesn't fit my symptoms, i have spinal pain and other pain etc. etc. and b) all it means is it isn't cancer, inflammation or infection

Feb 16, 2015 4:10 AM

By the way NSLBP with deconditioning is a fake diagnosis because it stands for Non-Specific Low Back Pain with muscle atrophy but a) it doesn't fit my symptoms, i have spinal pain and other pain etc. etc. and b) all it means is it isn't cancer, inflammation or infection

Feb 16, 2015 8:03 AM

Reece, I truly sense your frustration and I know your pain (9/10). I also have many doctors who "brushed off" me &/or suggested diagnoses to look into. But I think its really great that you found someone who is going to try and help you , albeit through a "guinea pig" program. I've been a guinea pig for surgical procedures several times due to abnormal issues. It does help doctors & future patients. That being said, try and stay positive, knowing I & many others are lifting you up in prayer, and we'll be here to listen and help how we can. It will not be an easy road, and it may take longer than you hope, but have faith & stay as positive as possible ... Defeat in the mind can lead to defeat in the body. Love & prayers to you...πŸ™πŸ˜˜

Feb 16, 2015 8:15 AM

Thank you flappy, I'm just so terrified of the pain I'll be in and if it doesn't work that it will all be for nothing

Feb 16, 2015 8:19 AM

Try using relaxation music when going through it, if they'll let you. And like "the little train who could," keep telling yourself you can do this, you can get to the top of the hill! I'm here cheering for you!!!

Feb 16, 2015 8:43 AM

Reece, I keep saying to myself that line from an old war movie "pain is your friend, it lets you know you're not dead" when I feel particularly crappy. I hope the pain you will have to endure will lead to an improvement for you. I hope this program is successful and you'll be able to change the future for many more people in your situation!

Feb 16, 2015 11:33 AM

Reece, I know in my heart that you can get through this. I feel your frustration as I too have been brushed aside when MRI, X-ray, ct scans, etc came up as " normal". Then told its in your head, you're a hypochondriac, you need therapy, etc.. I'm glad your doctor is willing to go the extra mile to put a program in place to try and help you.. God Bless you that you want to help others and are willing to do so. I hope that this treatment works for you. Hang in there and remember, we're all here for you.

Feb 16, 2015 1:06 PM

These are good ideas Reece! I wish you the best. Hang in there! Who knows... You may grow from this and write a book on what you've experienced! :)

Feb 16, 2015 4:40 PM

Reece, absoluty keep as positive as possible. I tend to laugh (bizarre as that is) when I'm in pain. I tell myself I have to laugh or cry and I'd rather choose laugh. I'm no where near your pain level and I can't imagine what you are going through but just know there is loads of positive energy and prayers coming to you.

Feb 16, 2015 6:06 PM

Oregon, your not the only one who does that. I feel your pain Reece. It's so frustrating to just be brushed aside at times. Thank you for given me the motivation to keep going tonight. I really needed to hear that.

Feb 16, 2015 6:11 PM

Okay, here goes " did you hear the one about the Whiney old lady from Oregon?..." Lol just kidding...I love the support of the site and the fact that it's safe to vent and unload without worrying about reprocussions or judgements!

Feb 20, 2015 4:39 AM

Btw I'd be receiving physiotherapy and psychotherapy as well as a dietician helping me maintain my weight loss (I've managed to loss 6kg)

Feb 20, 2015 10:21 AM

It is but I'm so terrified of the pain that when I think about it I can't move (not far from my normal mobility anyway XD ) #MyAttemptAtAJoke

Feb 20, 2015 1:17 PM

Good news Reece!!! Been praying for you.

Feb 20, 2015 5:55 PM

That is good news Reece. I just restarted physical therapy this week. I made sure the therapist was aware of my multiple health problems and fatigue etc... Luckily I know him from prior therapy and he is listening to me and we are starting super slow. Baby steps, I told him we have to treat my body like a China doll lol and he agreed. Yesterday we started with weights and are using 1 pounders, lol. A bit embarrassing but it is what it is.

Feb 21, 2015 1:43 AM

Yeah, they'll be sending me up quickly, I do physio 3 times day there (whether I'm in pain or not I've been told)

Feb 21, 2015 1:45 AM

Don't be embarrassed sandi, you have to listen to your body and slowly ush it along

Feb 21, 2015 2:14 AM

Good luck Reece! I had to do PT on my neck 3xweek before my insurance would approve my neck surgery. They make you try all of the conservative treatments first. I hope you have better results than I did! It aggravated my neck terribly! When I went for my back it seemed to help some, but not enough so they discontinued the treatment. I wish you good luck and pain free days!

Feb 21, 2015 3:13 AM

Thank you Horns, I hope so too but I'm doubtful

Feb 21, 2015 4:42 PM

Reecebrowne, I wish you good results too. Maybe its because of my age or the 2 neck fusions and lumbar disc issues, but PT made me worse. They were trying to strengthen my core muscles and didn't listen when I told them it was hurting. So when they finally stopped and sent me back to my doc they wrote "non compliant" in the notes.

Feb 22, 2015 7:10 AM

I'm so tired of assh*le Dr's and PT's

Feb 23, 2015 12:43 AM

I hear that!!! I'm sorry, I know it's hard.

Mar 21, 2015 6:45 AM

Hi Reece, πŸ™‹
How are you doing? Praying & hoping you're getting some improvement &/or answers. πŸ™πŸŒΌ

Mar 21, 2015 10:10 AM

Reese Browned I hope that this pt will help you. Will keep you in my thoughts and prayers. When I saw my Dr. after he started me on Fentonyl patches how was my pain levels, I tried to tell him that the pain level in my upper back except my shoulders was a 6-7 but my shoulders it was a 10,and my thighs and legs were a7-8. He looked at me with a disgusted look and said no whole body pain so I told him a 8-10. It's like we are stupid or something. I don't know about everyone else but my pain levels aren't the same all over my body.

Mar 23, 2015 6:04 AM

Thanks flappy, my walking has improved a lot but my pain is no better.
Weezie my pain diagram is actually minute differences in pain, with the exception of the first 2 colours yellow and orange all of my pain is severe with very tiny differences and red and dark red have quite a difference. My doctors have given up on helping my pain and I'm in 9/10 daily, they won't even test me for CFS/ME! Sorry for tthe whining, I'll cut it short now

Mar 23, 2015 6:13 AM

By orange (in the last post)I mean amber, the one above yellow

Mar 23, 2015 7:16 AM

That's great about the walking Reece! Are they working with you on relaxation techniques to get through the pain? I'm still praying someone will find a way to help your pain more. I hope you have a blessed day with less pain in at least one area of your body. πŸ™πŸŒΌ And whining is allowed here πŸ˜‰

Mar 23, 2015 10:38 AM

Reece, you're not whining.... Even if you were, like FlappsyLady said, it IS allowed here. I'm glad you're walking better but there has just got to be some way to ease your pain. It's so hard to live daily life with such high pain levels... I know because I'm usually 8-8.5/10. I pray your pain levels get lower and that your walking continues to get better. Praying for you..... πŸ’•πŸŒ»πŸ™πŸŒΊ

Mar 23, 2015 7:22 PM

Reece that wonderful about the walking , don't worry about the whining it's allowed here like Alwayz and Flappsy said. Will keep you in my thoughts and prayers.

Mar 25, 2015 1:18 PM

I'm hoping to get referred to Manchester but I've been asking forever and all of my doctors, family etc. Say that the NHS (my docs) aren't going to do any more tests, change any of my meds or drop any procedures (I. E. Nerve blocks)

Flappy I have learnt self hypnosis and breathing exercises and have been practising a long time. Unfortunately I have yielded no results

Mar 25, 2015 1:28 PM

And sorry in a previous post I said yellow and amber are the only colours that don't mean severe. I meant yellow and baige (the one above yellow)

Mar 25, 2015 2:13 PM

Well Reece, we can keep hoping and praying. I've never believed hypnosis works. I do believe relaxation techniques help. The more stressed we are the worse we feel.

In my 20-30's I thought I was invincible, even with the mild issues I had then. I realize now that if I had done some things differently I might not be as sick as I am today. Believe it or not, being patient & calm is something we all must practice. I've just learned this myself in the past 3-4 years, and I'll be 54 this year.

If nothing else your relaxation techniques will help you not feel stressed, or help relieve it when you do. Since no one thing is helping, maybe a combined method will eventually turn things around and you'll get some relief. I sure am hoping & praying so. I hate that you (& other young people) are suffering. As hard as it is, just know we're here for you. πŸ™πŸŒΌπŸ’•

Mar 30, 2015 2:32 PM

At the moment I am on am intensive home regime of hypnotherapy, relaxation techniques andand physiotherapy and I'm soon to start a therapy I have not tried before but work a therapist I hate and they refuse to change hert to someone else! She made me worse last time! 😠😑😧😒😡😭

Mar 30, 2015 3:43 PM

Reece browned I am sorry you are through this. Hopefully she will be better this time around. Remember you can catch more flies with sugar than vinegar. Will be praying for you

Mar 31, 2015 4:35 AM

I know, I'm just so tired of all of this πŸ˜€πŸ˜³πŸ˜΅πŸ˜·πŸ˜«πŸ˜“πŸ˜ͺπŸ˜–

Mar 31, 2015 9:31 AM

Reece Browned I know I understand completely about being tired of the Mary go round of Drs,that we as a group have to go thru to get anything done. But belive me that they will put in your chart that you are uncooperative, and if you are beligerant,or anything else.

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