To all suferers

[scholey23]

I have been member of this site for about a week, now. I have read every post I can find. One thing I have noticed is that we are all suffering with the same thing but instead of telling each other that we know better or that my way is the only way or such similar sayings that we have all heard from our work colleagues, friends and even family, we are all sympathetic with each other. We make suggestions and provide advice and help and also we follow each others postings with genuine concern.

While we are all suffering the same complaints, our cases are very individual and personal. In my case it took me some twenty years before I would allow myself to be "Disabled" or suffering with "Chronic Pain Syndrome." During all that time I literally stuck to the key board and searched the internet high and low to find out what wa causing my pain. I learned an incredible amount of useful information, everything from 'quack remedies' to High Tech equipment and new drugs.

The main thing I learned was the definition of Chronic Pain. Chronic Pain is pain that is continuous for six months or more. I think we are all aware of how pain is normally handled by the nervous system but in our cases, the signals get muddled up somehow and while it initially physical in nature, there mental processes involved as well. It is not an easy problem to solve.

My researches gave me ample ammunition to take to my G.P. and have him make the necessary referrals to specialists that I wanted to see, not who they wanted me to see. I was able to speak to them on their level and was not afraid to question them.

I am extremely fortunate to have been seen by top surgeons and attended the best neurological cntre in the U.K.

I guess the upshot of all this diatribe is the two following statements.

1. Every morning I wake up and thank 'God" that I am alive.

2. Everywhere and every place there is always someone who is much more worse off than I am.,

In keeping the above statements in mind I feel that I am able to tackle anything that comes my way. l So, folks, let's all get up off our backsides, do our exercises, take our meds and let us think about all those who are worse of than we are and give thanks for what we CAN DO, NOT what we CANNOT DO.

Good luck to all of you and let's keep the posts coming so that we are all aware of what is happening out in the big wide world.

[Crazy_Horse]

Great post, Coach Scholey!

Inspiring!

Thanks for showing such Spirit!

Crazy_Horse

[lowlife]

Thank you for that and well said.

[katieoxo60]

Hello Scholey23, welcome to the site think I have already spoken to you on another post. But what ever as they say these days thank you for such a good outlook on our problems, your right there's lots of people out there far worse off health wise,. so we should concentrate on what we can do not what we can't. We also need to educate people to accept what we can do, not emphasis what we can't. In fact although disabled I can do more than some so called abled, much slower at it though have to admit. Adaptation to your health issues is how to cope with some things. Must go things to do. Have a good day speak to you again soon, keep up posting those words of wisdom.x

[Hidden]

wise words if life was that easy

[astitchintime]

Hello Scholey,

I think how you feel is very important. If you feel like "death warmed up" and can't get away from this no matter what you can do or not do then that, I think is another dimension. For example I can be very grateful that I can have a shower and change into nice clean clothes, but, that aspect of basic care does not counter-balance that my life is, many times a complet cess-pit, that I am battling with the doctors to put right. For example, I asked today at the surgery for some important information so as to aid my recorvery and she said "it will be days before the secretary contacts Dr. X so as to get back to me by phone". Given that my situation is dire and desperate it is a poor show on their part. So I am left to suffer and have to make another appointment with a doctor when it is so unneccessary. I was at the doctor's yesterday and the doctor would not give me the vital information for me to phone the hospital for an appointment. These people. .

I imagine many people on her do as you suggest and write out "a for grateful list" or in their minds do this. Sometimes if this was enough they would not be writing here would they? Shall we just go away and forget about things. Can't can we. Shall we all instead committ suicide? Not that easy.

A

[astitchintime]

I think you are one of those "pull yourself together" brigade. If we could do that we would believe me.

What about putting my bodily bits and pieces back together the way they should be? I really at this junction in my life can't go about saying there are people worse off and that means I should be grateful. It just don't do it for me. About the only person better off than myself is one in the same position that is determined enough to hang a rope around their neck and finish it all. After all they shoot animals in dire health conditions. why so unkind to human beings? People.

A

[scholey23]

I have been in that very same situation. I was even removed from the NHS because I refused letters regarding Bowel Cancer Treatment. My G.Ps. Admin staff. Dismissed me from their list even though I was at surgery that morning. I was immediately on the phone to whoever I could reach. To cut a long story short, the office manager had screwed up and I was immediately reinstated.

Yes, we all have many bad days and feel totally useless and wasted. Yes, the battle is very hard but you must keep going because if you stop pushing who is there to do things for you. Remember, it is the squeaky wheel that gets the oil. You have to keep bugging the office staff to get the paperwork for you, push them to make the appointments. Very soon they will realise that you are a force to be reckoned with and things will go your way. Do not let them push you around. But don't be obnoxious about it. Be firm and be polite and keep a smile on your face. They hate that because they cannot say you were rude, etc.

All I am trying to say is that if you try and remain positive then things. Will happen. If you are continually negative then all you will achieve. Is. Becoming. A very,very miserable person who isextremelylonely. My comments are just general. Everyone has there own ways of dealing with things.

[Hidden]

"So, folks, let's all get up off our backsides, do our exercises", That comment shows you know nothing about how severely debilitating Complex Regional Pain Syndrome is. I can't even lift a full Coffee Mug with my Right Hand barely walk 10 yds without my legs crumpling from the pain and I'm one of the lucky ones. For some it has gone full body all 4 limbs torso neck scalp eyes mouth and internal organs. I know of some who are bedbound 24/7 having to be helped out and into an ambulance for hospital appointments, even having to be given anaesthesia to have there nails cut. So Please tell me exactly what exercise we can do

[scholey23 in reply to Hidden]

I do not and have never said we are all the same. What I do say is that we should never give up. In all cases there are some things we can do and some things we cannot do. Concentrate on what we can do and leave what we can't do behind. Of course it is not easy. No one ever said it would be. Even those who have no injuries and live a normal life do not always have it easy.

I have been fortunate to have attended two Pain Management Courses. One in Canada and One in the U.K. I shared with other Pain Sufferers and spent a long time in listening to and discussing with them the many trials and tribulations of our cases. I saw some, who became good friends, at the beginning of the course, who were wheelchair bound and at the end they were able to walk out of the hospital on their own legs and they have continued to stay out of the chair. I have seen miracles performed at these two hospitals and I have seen failures. I have met persons who do not want to improve because they get more on benefits than if they were back to work. Those sufferers who just love to complain because they thrive on the attention given them.

I am saying never give up trying. Advances in Pain Management are occurring every day. Understanding of what pain is, how it all works and how corrections may be made are changing rapidly.

No, I do not have knowledge of every disease and hope to God, I never have but I do have some knowledge of Pain Control. Exercise, rest, relaxation, goal setting, pacing yourself are all part of controlling pain and I do advocate that we all try.

[Gogogirl47 in reply to scholey23]

Would love to know what hospital in Canada helped so much. I am in Canada and have hit a blank wall...no one can diagnose me lower back, hip and thigh pain or suggest what to go for it. Where was this pain centre you attended...l am in Toronto.

[scholey23 in reply to Gogogirl47]

I was treated at the Women’s College Hospital by Dr Mike Ford and then at the Arthritic and Orthopaedic Hosp., again by Mike Ford and had my drug pump installed by Dr. Phillip Peng at the University Hospital. Before the pump was put in I had to spend half a day doing psychological tests.

[Gogogirl47 in reply to scholey23]

Thank you so much for the info...l will see what l can find out. Cheers, Lin

[scholey23 in reply to Gogogirl47]

Do NOT try and get an appointment with a Dr.Hamilton who wrote the “Back Doctor.” He also owns the Back Clinic chain. I was treated by them and had nothing but problems. My case was also WSIB. Enough said about that.

Mike Ford is the best Orthopaedic Surgeon, he was the surgeon on staff for the Argos and the Blue Jays when they won the Grey Cup and The World Series three times respectively. Dr Peng is an Anasthetist and teaches doctors from all over the world . He is also excellent and very skilled. Good luck.

[scholey23 in reply to Gogogirl47]

I also attended a pain management course in Hamilton. Don’t go there if you are on WSIB.

[Gogogirl47 in reply to scholey23]

Am retired so not on wsib. Hamilton is not on my radar...too far .

[scholey23 in reply to Gogogirl47]

Hi again. I have just reread the previous from you. The symptzoms you describe, remember I am not a doctor, sound similar to mine which was caused by a herniated disc compressing the nerve root. There was a further complication of Piriformis syndrome. My surgeries were all successful except for the pain, so I commenced my Internet search and with the help of my Chiropracter and my own GP as well as the reluctant help of the Police Medical Officer. He thought I was malingering. Any way, boiling it all down, it depends on how cooperative your GP is in referring you to specialists. Have you been seen by an Orthopaedic Surgeon? Have you had a CT scan or an MRI scan? a Nerve Conductivity Test?

Keep me posted please and let me know how you get on.

Clive.

[Gogogirl47 in reply to scholey23]

Had series of regular bone xrays of spine, hips and knees. Had vascular Doppler to rule out claudication/artery disease and have nerve conduction a week from today. Apart from vascular doc and a totally useless rheumatologist have not seen anyone else. Rheumatologist who didn't even examine me put off down to trochanteric bursitis Which l think is BS. She gives me a three page handout Which goes on about that being a common problem for cyclists, joggers etc. People who are active. My pain came on in bed overnight and always did. That is why l thought arterial blockages atc first but test ruled that out. The outer hip thigh pain in muscle hurt like he'll. But now pain also involved knees and sometimes shooting pains below that. But always worse at rest.

[Hidden]

Let me try and explain how dangerous saying "So, folks, let's all get up off our backsides, do our exercises", is to a complex regional pain sufferer is. when I finally got to see a specialist 1year and 11 days after my complex regional pain syndrome started and told him what exercises and treatment Milton Keynes Hand Therapists had done to me he said that because of their actions I would never have a chance of remission and there was a high likelihood of it spreading. It has twice.

So please don't generalise on here you could cause serous consqueneces

[scholey23 in reply to Hidden]

Kevscar, by way of explanation and that you seem so hot under the collar, I have to be general in my writings. I can only relate to my own experiences, my own pain and my own knowledge. I would sincerely hope that people like yourself with your disease are sufficiently aware of what you can and cannot do. I have never written or told anyone to deliberately go out and hurt yourself. I have advocated Pacing yourself, Setting Goals, Rest and Relaxation and Exercise. I have written about my knowledge of drugs and in experiences I have had with Pain Management. My intentions are to help. If you do not like that then I suggest that you do not read my postings. Obviously you are well qualified to speak about Complex Regional Pain Syndrome and feel that you can advise all those suffering with the syndrome.

If you think that by telling folks to "Get off Their Backsides...." I want them to hurt themselves, you are sadly mistaken, my friend. Surely anyone suffering with CRPS is very aware of what they can and cannot do?

[deejames in reply to scholey23]

Shocley 23 I have to say that your statements about rest, setting goals, pacing etc make huge sense. Its the way I'm trying to deal with my difficulties. Obviously some of it is not appropriate fro some people . I think your ' get off your backsides' might be taken more metaphorically. I've certainly found that trying to take some control over what happens to me can only be beneficial.

Kevscar, we all have differing degrees of problems and ways of dealing with them. Surely what this site is about is sharing what works for us individually in the hope that someone else might get help from that suggestion. We are here to support each other. If something doesn't resonate with you then it can be ignored don't you think ?

[scholey23 in reply to deejames]

Thank you so much for your valued comments. When I wrote "...get off your backsides," I meant that whatever part of the body we are able to move, then let us start moving it. Any form of exercise is certainly better than none at all, no matter what our ailments are.

[Hidden]

That is the trouble very few sufferers do, there are 16.000 diagnosed in the UK but according to 4 different medical sources there are between 240,000 and 464,000 un/misdiagnosed. Our Specialist are 20 years behind the rest of the world.

I have no doubt you did not intend to hurt anybody but that doesn't mean you wouldn't by giving generalised advice.

[johnsmith]

What is causing one's pain may not be found on the internet for many people. Most neurologists have no idea when it comes to pain and how the body works as an engineering system. A top surgeon cannot do anything about pain caused by a problem caused by muscular behaviour other than make the pain many times worse.

There are people who the surgeons and neurologists have helped. There are many many people who they have not helped.

The medical model of pain talks about pain signals getting crossed. The medical model has no idea that maybe the pain signals are not get crossed and that there is a muscle somewhere applying pressure on a nerve which causes the nerve to complain. Or there there is damage and inflammation which is causing increased pressure in a particular area with the result that pain signals are being produced. This concept is part of an engineering systems approach.

My chiropractor has shown me time and time again how a minute muscle disturbance can cause pain in a part of the body that is seemingly unrelated. The "muscle trains" concept provides a reason why this is so. The spinal reflexes also demonstrate a reason why this is so. This sort of experience cannot be found on the internet.

The Scientific American March edition has an article on how electrical stimulation of the vagus nerve via a pace maker can remove the symptoms of rheumatoid arthritis. The vagus nerve is influenced by the muscles in the back applying pressure on the nerve roots.

Sorry, just someone irritated by the loads of people in pain because muscle behaviour almost never receives treatment from medical consultants who blame the problem on crossed nerves.

[scholey23 in reply to johnsmith]

Some excellent comments. The theory of Cranial Sacro massage is very similar to what you are saying. Very simply put, the brain and spinal cord are encased in a tube of fluid. This is a sealed unit and because it is fluid, it ebbs and flows similar to the ocean. When there is pain, the flow is interrupted. The massage locates the area causing pain and then works to correct the flow and put things back to normal. This is, obviously, a very, very simplified explanation. I had a session of this form of massage and did feel I received a longer lasting period of reduced pain than I had had with any other form of massage.