Well, after three years trying in vain to get help from the doctors, consultants and specialists, by whom I have been diagnosed with mild CFS/ME/SEID, I’m now going my own way.
Settle in, it will be a long post –
Oh, if you need a bit of a back history click over here to read what’s gone on in the last three years. Better make a cuppa as it is another long read.
Yes I do agree that I suffer from Chronic Fatigue but it does not explain why I’m still in pain and what has caused the pain to start. And no one, so far, has told me what I need to do to get better. I’m just instructed to learn to “manage” my condition.
I’m reluctant to take any pain killers, because that is just masking what is happening and I fear that I might do permanent damage if I can’t feel when it hurts. I’m sure that pain is the body’s way of telling you “Erm, please stop what you are doing, or else you will break me.”
The other reason is that I tried amitriptyline and I was – to put it bluntly – off my tits. I only had a small dose and for two days, but I have never felt so out of control and spaced out, and I didn’t feel like enduring this for another five to six weeks before the side effects wore off.
Over the last three years only three things have helped in reducing my pain/discomfort/symptoms.
Antibiotics: which I took for my first bout of middle ear infection that I couldn’t shift. Overnight wonders happened and the pain in my ears and sinuses went away. Along with the horrid pain in my feet, plantar fasciitis, which caused me to struggle with walking especially in the mornings. After two days on antibiotics both ailments were reduced to less that 10% of what they were before. Third day they were gone. Though those three days I was not stable, my balance was off, painful clicking in ears, hot and cold pressure pain in my sinuses. And I felt that I didn’t have full control of my body. My GP was very surprised when I told him how fast it had worked. And said “You’ve got me beat” when he heard that my feet pain went away too. Sadly about six months later the ailments were back with a vengeance.
Turmeric: or rather the active ingredient within, curcumin. From random clicking about I read on forums, reviews etc. that many people have had success with taking turmeric tablets. Anything from pain, swelling, fatigue, better joint movement etc. all with various levels of success. Not a total cure but made life better for so many. So yes, a shot in the dark, I got a pot of 500mg tablets on an offer from a health food shop. After three days taking these I could feel a relief from the pain, pressure and mucus build up in my nose ears and sinuses. I would say about a quarter drop in annoyances, so instead of feeling like the need to take Sudafed (Sinus Pressure Pain & Cold Congestion Relief) or paracetamol, I could actually live with the pain and pressure. When I forgot to order some more in and ran out I could feel after three or four days that the pain and pressure coming back.
Homeopathy: a natural antibiotic. I’m firmly in the camp that this homeopathy is – for the lack of a better word – snake oil, tree-hugging-hippy-dippy-old-wive-tales. Though, I do agree that natural stuff, as nature intended, is good for you. Not all these funny chemicals, “E” numbers and other additives which is put into our food and medicine. So after two and half years of no improvements regarding my ailments I thought “Why the heck not?” when a good friend said to give it a go. I got one potion and clearly something was afoot within a half an hour. Clicking and pressure relief in my middle ears and sinus. A milder reaction compared to the reaction I had with the antibiotics, but exactly the same, and at least I had control.
We even tried the Whole30, a Paleo based diet, which excludes grain, sugar, dairy etc. We were very strict for a month and a bit. We haven’t found anything that my body/stomach reacted to when trying to introduce various bits back into our meals. Though, I can feel when I have sugar, so chocolate and high sugar desserts is very much off the menu. Every time I can feel a not very nice rush and when I had a lot my vision played up. Junk food is definitely off the menu forever, shocking that people eat this stuff. I felt utterly crap, swollen tongue, saliva filling my mouth, bizarre rush through the body (nearly like fever shivers), feeling more hungry and stomach just felt meh. Do people just ignore this when they eat shite?
I was on steroids for my middle ear infection that I couldn’t shift, for three months. While I took it all my other symptoms got worse – more painful arms and hands, feet a right killer where the pain crawled up my legs, felt much weaker, tired and fatigued. My general mood went south and it became harder to get going or starting anything, just didn’t have the oomph or desire to do anything. Sadly after that period the specialist found nothing wrong in my ear, nose and throat area and had no clue why the other ailments and symptoms got worse. When I asked him why the antibiotics had helped, his response was “I cannot help you, I am not a physician.” So that was great.
I have had various blood tests, including ones we had to pay for ourselves as the GP refused to listen to my concerns, and have been declared negative as far as Lyme Disease, Thyroid problems, low B12, D vitamins, diabetes etc are concerned. The only thing that all the various test and scans have found is a some damage to my ulnar nerve in my left hand, which sadly don’t explain the pain in both hands and arms.
After much reading, talking to friends etc it is time to do something, because waiting for it to just pass ain’t helping. The way my GP and other consultants are talking to me now is that they have done everything they can do, now stop moaning and go and learn how to live with it. Dismissive and disinterested.
Numerous things could be wrong from what I have gathered and the general consensus is to “reboot” my system to get me back on track. So along with a good friend I’m going to try out some more homeopathy and follow a nutritional supplement regime for fatigue devised by Dr Sarah Myhill.
I know the controversy surrounding her, but reading elsewhere on big respected forums many people have followed her advice and have become better over time. Yes some more than others. I will follow this for a half year along with eating healthily – in January I will follow an alkaline diet plan, as recommended by our friend who initially suggested homeopathy. If I see a backlash I will stop right away and if I feel any better I will continue and every three month I will reassess.
Honestly, what is the worst that can happen? All the stuff I will be taking are good natural supplements – vitamins, minerals, good fats, antioxidants. And, who knows, this “snake oil” might actually work.