Need help managing possible CFS!

I have posted my testemony a few times and do so here to save you looking for it.

About 1963:: It was an idilic life for a young father with a lovely wife and threeYoung boys. Up early to tend The horses, walk and milk the goats. Family breakfast then off to School and on to the office. Then collect the boys and off home to walk the goats and tend the homes. weekends just as packed. It was a great action packed semi rural life in our large old house requiring endless maintenance and boundless energy. My energy fell a little short when the wheat and barley fields were sprayed. That should have warned us.

Then came the Wilson era. Mr Wilson infamous for his "pound in your pocket" delvaluation speech. We could no longer afford our lovely big old house in its large garden and stables and outhouses. We sold up and moved to a smaller country house twenty miles the other side of town.

It was not long before I went to the doctor. It is onyye of these "space age viruses" he pronounced. Code for "I have not a clue what is wrong with you". As I didn't get any better he referred me to a chest clinic. There the consultant looked at my Xray which had a number of bright dots sprinkled over the chest. He suspected Sarcoidosis and a biopsy proved it.

He put me on a "smalll" dose of Prednisolone (22 mg daily) for three months. He assured me with two or at the very outside three treatments of three months he would have me right. From the first pill it was a disaster. Worse, I had not yet learned to say "No" to a doctor. The fatigue grew worse, I generally felt unwell, brain fog came and deepened, memory became more and more patchy, logical thought more and more impossible-at its worst, I had half an hour first thing in the morning-the smallest decision could take a day, or two or three. Speaking took immense effort getting a couple of words out at a time. 

One time when I was about 40 I was walking with my father-in-law. He was about 70. I just could NOT keep up. I felt that I must be like an 80 year old. My legs would not go fast enough. And I was cold although I was wearing my wool overcoat on a hot  August day. 

All that was spread over ten years. To me it is just a vague, patchy memory of misery. Our GP fairly early on had told my wife that such illnesses sometimes happened and she should not expect me to be around in about two years. Even in that my doctors were not correct. But pill was added to pill. None helped. At the end of this nightmare period I was attending the professor of psychiatry from the local top rate university. He listened/waited patiently while I struggled to get out the words to answer his questions. He added a large pill to my already large selection. But he wrote to the lung consultant begging him to stop the treatment. The Professor at least did not think I was a nut case or that my troubles were all in my head. Somehow when next attending the lung clinic I managed to decide. I told the consultant I would not take any more of his pills. "Is that fair to me." he replied. "If I do not come back, would that be ok?" I said.  He seemed happy at that.  

We, my wife mostly, had been doing some research. It was difficult. There was no web that provides us with so much help today. We talked to friends and got some help from homeopathy. We were also told that if all else failed, and we felt all else had failed, we should move to a different area. So we sold again and moved into town. That was the beginning of the long slow road to recovery. My wife took advice from a dietician. So I had a short period of a diet of filtered water, boiled brown rice and pears. Why? apparently few people react to brown rice or pears. Then one food at a time was added. If I did not react that food was added to y diet. If I did it was excluded. With my new diet I gradually, very gradually made progress. Once I was making progress it was obvious when a household chemical or cosmetic upset me. Any offender was excluded. It also became obvious when I became affected by chemicals outside the house. I became very wary of any scent of chemical including cosmetics. With unremitting care and perseverance I regained an acceptable level of "normal" health. It had taken much of another ten years. After that I gradually became more confident and little by little I found I could tollerate nearly everything that I had once excluded. I was almost normal once again. Sadly, I have few memories of my boys growing from primary school to their mid teens.

The major lesson I had to learn the hard way was never to push myself physically. Wherever I did there was a long pay back penalty of exhaustion and fatigue. I still cannot afford to push myself. I have to think very carefully whether the object is worth the cost of two to three days of being washed out.. 

 

Hello Miabright:  I am fully supportive of, and understanding of, your issues, and you; as I know the feelings that you are wxperiencing.  I don't know if you read my last contributions (which I added on discovering this sight, last week);  but I,  too, spent many years trying to understand what was happening to me, and seeking many doctors' advice, too.  (even to going to psychiatrists, as I felt there was a good chance it ws psychosimatic - as I started having some issues with a weak muscle a couple of years after nursing my father who was terminally ill). At this stage, a physician with whom I worked, thought I had developed MS.....so went through A LOT OF testing, including lumbar punctures, then blood patches, EEGs etc..all coming back negative.  Even after being referred to a Rhuematologist, also with whom I knew/worked with and trusted, I thought I only had Osteo-arthrites...but couldn't understand how this could cause all of the other more debillitating effects...it wasn't until I was having a coffee with a good friend of mine who was also a nurse, and she told me I had CFS...that i started researching more and more, and agreed.   In answer to your question re treatment, the only answer I have for you, is Yes, you do need to treat each symptom, especially the "burning pain in muscles" with Endep,  Valium for muscle Stiffness, and watch your Activity levels and stop/rest.....I still get Very frustrated, and know that even though my husband and children know that I do have a Definitive Diagnosis, I know my husband and son don't always understand why I can't do the things that they want me to....even what I could do  2 years ago, am not able to do now, and I think "why"..surely someone can find a cure?  It's not terminal...but it's b...restrictive.   My concern for you is your age, as you are sooo young, and you are missing out on the most important years of your life.  Perhaps, if you feel upto studying via correspondence, at your own pace, hopefully your will be able to have a career, and when answers come through, you will be ready to take on life with all that you can have, with a career and financial  security. 

What a sad, but typical, saga. When I first got ME/CFS, two doctors told me I just needed a vacation, implying it was all in my head. One doctor said, “You know, some doctors don’t believe this illness is real.” I didn’t believe them for one minute. I went to UCLA and got a diagnosis. I stay away from people who don’t believe this is a real illness. I immediately stop seeing doctors who don’t think it’s real. In other words, I can’t control ignorance and arrogance. But I can control my own thoughts and actions. I do hope you get into that special program. Until then, there’s some common sense stuff you can do. First, don’t push yourself! That can cause symptoms to worsen, or can result in a relapse. You might want to reconsider your 40-hour work week. Avoid stress to the extent possible. To do this, aside from avoiding stressful situations, consider meditation and mindfulness, listening to music, deep breathing, whatever works for you. Get a good night’s sleep if you can. Avoid sugar and caffeing, and eat healthfully. Oh, one more thing. Your breathing issues remind me of when I went through “air hunger,” which is a feeling of not being able to get enough air. This is a fairly common symptom of ME/CFS. Could that be what you’re experiencing? 

Try reading Fighting Fatigue by Sue Pemberton. It's not a solution but it gives some pointers on how to cope

Hi Mia, Have you heard of ANZMES- The Associated New Zealand M.E. Society? They have a website under the same name and are there to offer support to those in New Zealand- might be worth telling the GPS you see too- if they are so ignorant of it. 20,000 poeple in NZ suffer with CFS/M.E. apparently so GPS shouldnt dismiss you (but heck we know they do hey). Lots of support on here as well as on support groups on the web in nhow ot cope etc and how to have the best life possible xx