I have recieved this question so many times I would like to explain !
First I would like to split just a few of my healthproblems and their causes;
DIAGNOSIS; - Spinaldamage and the after-effects following backsurgery. This state was in itself enough to qualify for disability - as I lost almost all my work ability - the state has been completely abandoned to treat or relieve.
Given me duing a bachsurgery in 1991 - left leg feels frozen, like it has been in a deepfrezer for many years. !!
And the rest of the body feels like it is covered by redglowing lava !!!
And then someone have tried to connet the two bodyparts ! A really weird and very unnatural feeling for humanbody !!! And very stressfull ! Hard to adjust to, and hard to perceive temperature correctly.
I can freeze in the heatwave !!!
I have a complet different experience and perception of temperature after surgery. Diffucult to handle with the EDSs need for staedy temperature and clothing !
I needed to learn to walk again - I can walk a few meters with walkingsticks, an ability that I have to maintain with pfysical training each day. Rest of the day I use electric wheelchair.
Such a damage makes your body wanna compensate, and it bukles up, stiffens around the affected location. So many many new damages occured across the hole back, which also is heavily attaked by EDS.
I needed to get used to lots of different extreme pain, nothing could easy - my basic pain was, and is still, that the very little movement in your body when breathing, makes me wanna scream !
Everything in addition requires an enourmous self-disciplin and effort to do ! EVEN the smallest movements we do without thinking about !!!!
When a spinaldamage like this occurs, it automatically gives nervefunctiondamage to the urinbladder.
DIAGNOSIS; Neuromuscular dysfunctionnn of the urinary bladder without spec.
DIAGNOSIS; Interstitiel Cystitis, Painfull Bladder Syndrome. State in itself so severe it dstroyed my abilty to work.
The bladder got ill very soon - it was tryed treated intensely for many years but without effect.
Perhaps because there are several serious conditions that trigger, provocate and aggravate.
I became incontinent, I had to learn to use catheters, heavy cramps started, urger, up to 40 - 50 per day, and awfull cramps - between the spinal and bladder - a nervesystem completely beyond your own control.
Urin became like acid.
LOTS and lots of other symptoms, heavy reactions on food and drink.
Lots of bleeding from the bladder.
If my bladder isnt emptied well enough and on regulare basic the presure changes and that is detected by the spinal and a heavy headacke starts, dizzines..and so on and on and on.....and heavy cramps that gets like an interaction between the bladder and the spinal cord !!!
And each movement can trigger new cramps.!!!
Arms, legs and lower body shakes and cramps without control, large blue spots indicates bleeding. And A LOT of other symptoms !!!
The list of symptome is almost endless !!!
DIAGNOSIS; Ehlers-Danlos (EDS) a congenitial connective tissue disease, diagnosid 7 years ago. LOTS of damage in the hole body - again provocated by other diagnosis - AND THE WAY they act together is like writting an hole new book - and completely impossible to deal with - or control !
DIAGNOSIS; Asthma, bronchitis - well treated at the moment.
-- ONE acut cough or sneeze can trigger seizures !
Complex long term/cronic nonmalignant pain.
I have approximately the last twenty years, only slept about 4 hours a day, I experience waking up with the feeling that it hurts too much to breathe, I feel my sleep is interrupted constantly.
And was sent to a specialist-unit and was linked to very sensitive equipment and the specialists analyzed the results the same way as I experiences.
I stop to breathe because of pain !
Awake I can force myself to breathe, in sleep I cant.
Post Traumatic Stress Disorder.
Pains for so many years - at this level causes stress - the body feels under siege, you have been taken hostage in a broken body - a prison without shortcut for one seconds peace !
This was just a few headlines .....
This is just the headlines - I could continue with how I must deal with autoimmune disease that causes major problems with the immune system (lots of pneumonias and other infections) in addition to those things mentioned here.
But the hopelessness of relieving should be clearly displayed.This just to explain the level of pain and damage and show why it is impossible to ease.
Painrelief - not possible, have tried ALL known combinations of different types of medicine, tolerate it badly (gets very ill) because of EDS .. and abandoned everywhere !
I survives through mental resources and have invented my own way of cooping in order to maintain self-control ...
Have been with lots of specialists, and also pain clinics, those who are specilazing in getting people to LIVE with pain - they told me they have learned more from me, than they would ever be able to teach me and have recommended me to write a book about my "ways to manage" !!!!
And after only 25 treatments in a chamber in the hospital !!!!
And I was sooo amazed when I had the first 25 treatments in the chamber.
Cause it was a remarakble difference in my entire life perception !!!!
It is a welknown and accpeted fact everywhere, that after staying just 1½ hour, only 25 times in a decompression chamber, you have 8-fold you stamcells in your body !
Now THAT is a form of a life-gift for a sick body ! These are the cells designed to ask "OK - where in the body there are some injuries, where should I go and cure"? - It is a vey complicated subject.But also extremely intreseting and fascinating - documentation will be uploaded soon.After the 25 Treatments I had 7 pages - notes filled with improvements -
AMAZING !!! See them here;
Oxygen in mask - outside chamber - why ?
On the way home from the hospital, in the ambulance I got many heavy cramps, 3 hours drive, bad roads, first wintherday with lots of snow and really cold in the ambulance.
And exhausted for many reasons...so they called for a doctor to come to the ambulance and the doctor offered - oxygen ! As he heared that any medication would make me more ill
(here in Denmark there are ambulances that drives you between hospitals or between hospital or home, most of these transports dosnt have doctors on board, but they can offcourse be called if nessacary)
So he said maybe I was so lucky that the oxygen would work a little better than usual because of the chambertreatment. He was willing to give it a try !
SO we tried higher dose then normally used, and I DID feel much more effect !
And I made it home with the nice doctor and oxygen - he didnt know much about the subject - BUT he knew, that THEY ALWAYS offers oxygen to a lot of the people they help.
They KNOW FOR A FACT,he said, that oxygen makes you feel better, it gives you the "boost" that makes it possible for people who have been in chok or traumatic experinces to recover faster !
And it is painkilling, and makes people feel better and then more able to cooperate with the emergencyteam.
After comming home, I offcourse tried to get more treatment.
And informations !
The use of oxygen.
Here in Denmark (as many other places) it is believed, that if a person cant saturate - if your oxygen consumption is not good enough, then you have, among many other issues, cramps - in your muscles !
If you breathe oxygen in a mask - most used is 3 lite pr minute, you will feel a relief.
But when you saturate well - If your oxygen consumption is good enough you CANT benefit from oxygen !
- And it may even be very dangerous.!!!!!!!!!
Meaning - you get cramps as a symptom of needing oxygen - and when you saturate the oxygen will solve the cramps and it will be fine !
The pain will easy and - no cramp !
This is a very very simple explanation - there will be more comming, cause the doctors also seems to mean that the oxygen in itself ISNT painkilling, antispasmodic and ALOT of other wonderfull things.
They mean that bad saturation is the only indication - and it dosnt work in any other ways ! And end of conversation !!!!
And the absolute only way to get oxygen here, is if you have ex COL, or for other reason dont saturate well enough - and have a doctor from a hospital to prescribe it. Otherwise it isnt possible !
I have tried ! Also contacted oxygencompagny and asked if I could buy as a privatperson - no way !
And I offcourse asked Dr Petra Kliempt if it was me who in some way simply was way out of line here.
Cause some of the doctors got VERY angry and upset with me - but again Petra send documentation and said that I should consider myself very lucky, cause my body was working extremely fine with oxygen !
And the oxygen DO a lot of good things ! And send documentaion ! I will opload some later !!
And explained that doctors also here, have "forgotten" to ask the next logic question - if the oxygen work so wonderfull when a person is in need of oxygen and so greatly ease the pain and discomfort -
WILL THE OXYGEN STILL HAVE GREAT EFFECT TO OFFER EVEN FOR A PERSON WHO SATURATE WEL ????
Luckely for me and lots of other persons, doctors other places have asked that question - and they can prove that it does have a lot of effect !
So it isnt me who just got some weird experience !
As I have now been connected to oxygen in mask for many days I can tell that the "top" of the cramps ARE easing - I CAN BEGIN TO FEEL THE EFFECT - I must also say that I have had heavy bleedings and spianlcramps and it is such a blessing to feel the ease !! As a cooling breeze in an overhaeted room it shows the first indications of effect.
I know I must be patient - and I have learned a great deal about that the last many years - so I will.
Only place besids this (here in Denmark) is oxygen used as a treatment - of Hortons headacke.
They also know about pain that can make a person senseless, meaning they dont know who they are, where they are going, how to breathe, what is up and down, cant see anything (apart from the blood-red mist pain has placed in front of your eyes !!)
The hugh detour !!!!
I had to take a huge detour to get oxygen I went throught the entire healthcaresystem talked to LOTS of doctors about this subject. Chambertreatment and the use of oxygen - in the last despearte hope for help - I started with the hope that a patient like me would be meet somewhere with just a tiny little posivite attitude, cause it would solve a lot of the problems that was so hopeless to treat. Some of them had the opportunity to help, the will just was not present.
I've never felt that I should have any special treatment - but having to live with this health was not possible anymore. I can perfectly well accept and respect a no! But I could no longer mobilize to live with this chaos - so I let myself be persuaded to go public and use the principle called "human compassion".
And it was quite overwhelming !
I had to take a hugh detour to get MY oxygen - both in the decompression chamber and outside - it's unbelievable that it is now here and I start to feel the first tentative signs ....it is sooooo overwhelming fantastic!!
Things can only get better !!!!!!! ;)