Hi everyone ive been on here a few times not long been diagnosed with cps aswell has having ligament damage and movement of my c1 and c2. Anyway it always seems that when its time for our dreaded week of crap that we that suffer get it full wack and all our aches and pains are practicaly trebbled . We feel so ill no that we do not anyway . I know its to do with our hormones and chemicals in our body . But dont you all think we suffer enough ?
This is so unfair do u not think ? Xxx
That aside, Donna, I've been wondering how you got on in your quest for appropriate treatment after you returned to the UK with the results from your dmx x-ray at Nubest that showed extensive ligament damage to your neck, iirc.
Sorry to hear about the CRPS diagnosis in a way but does it seem to be helpful in obtaining a useful referral for you to a specialist Pain Clinic?
Hi its been crazy i went to see a neurosurgeon he said i wouldnt benefit from surgery .paid to go see a orthopedic surgeon he said he had never seen anything like it before went of with results to see surgeons come back with the same . Referred me to maxifacial for my jaw to do exercises . No one wants to touch me . I go see a chiropracta in london that has been brilliant he has broke down loads of tissue damage and loads of inflammation but because i had to go get another upright mri scan in london that showed all the same as nubest my ontinoid peg which joins the neck to my head has been shifted so my head keeps moving and i have to have my spine realined ive spent thousands . I got in touch with a clinic for stem cell injections in colorado they said i was a candidate but my chiropracta has enquired about prolotherapy in milton keynes as he needs it . He reckons if i get my ligaments sorted my spine will hold my head . It has been a nightmare i tell you .but if i want to go to tampa and pay for fusion they will do it straight away . Drs in uk are not trained on ligaments and things like them scans and do not want to put there head on the line so i have been pretty much on my own with it all . Long story . But still really suffering and lost faith in the system . Hope you are well xx
Donna as a person that lives daily with the same problems as you, I do know exactly what your going through, especially the facial and neck areas, that drive you mad with pain that feels like it goes all the way into the brain, affecting ears and eyes and especially the jaws.
But I wanted to let you know that there really isn't much that the doctors can do, but I know how clinging to hope stops you moving on to managing your pain and accepting your situation so that you use all your mind to find within yourself the strength to find exercises and movements that don't cause more pain.
In the face there are surprisingly muscles that you never noticed before, for example the ears , forehead and eyebrow muscles all seem to affect my pain, meaning that as you get in touch with learning to move these muscles you will find that as you move each one, that the different pressures are shifting the pain, I do them myself as I drive, and god knows what people think as they see me doing all these facial and mouth expressions while sitting at traffic lights. But I do know that it helps me with the worst of the pain even if it is just for a minute or two.
It is accepting that there is nothing that doctors can do and that you are on your own, because it is your body and mind that has to manage your life, not them, and there is many things that you will learn about your face and neck pain that can ease some of the worst pain and discomfort as you try to live some kind life with it, make no mistake it is a full time job, but you can do it by learning that distraction kicks in as you do these exercise without thinking as you go about what life you make for yourself.
I do hope this helps you a little, but you are never on your own when you know out there are other people that know exactly just what you are managing day in and day out, all the best Alex
PAIN OF ARTHRITIS AND SPONDYLOSIS (female)
Pain, Pain And More Pain
