Treatment

Tests

Your doctor will have excluded other illness though a number of tests, but it's worth looking closer at adrenal and thyroid levels, and magnesium, and B12 if they will do them, as espoused by Jacob Teiltelbaum (see Resources).

Management

It's best to start with management. Though this does not provide an outright solution, it does start to provide a basis for an improved lifestyle within the constraints of the illness. So,

• Always leave some energy for tomorrow
  Stop before you start to tire
  
  
• Always enjoy what you have of the day
  Retrain yourself to see what you are getting from the day, be it minutes or hours, and to ignore what you are missing.
  
  
• Take contentment from within
  Friends will find it hard to help - they see you when you have a little energy, and find it hard to square that with the times you cannot do anything. If you're lucky you'll find a supportive "super-friend" - if not remember the you know that you are making the best out of your life albeit limited for the moment.
  
  
• Reduce the pain
  Many treatments may help ease the pain. I ended up using co-dyromol and added dihydrocodiene, though TENS and muscle stretching do help for short periods, as does a warm shower on rising.
  
  
• Get some sleep
  If you're not getting enough sleep (and that might need to be more than the 8 hour average), ask for some prescription drugs - it may make you feel drowsy in the early morning, but it is a great improvement on the fatigue/pain without.
  
  Napping as and when may help - I found it used to, though now it wrecks any chance of good sleep at night.
  
  
• Manage sensitivities
  CFS suffers seem very sensitive to chemicals and drugs both prescription (sleeping tablets), and those in daily living (coffee, alcohol, perfume). Sadly it's best to avoid the latter collection if at all possible.
  
  Also get chemical, food and environmental sensitivities tested (reliably, not things like hair analysis). I, for one, found myself allergic to dust mites, and to a lesser extent cats and dogs. It all helps.
  
  

Alternative Practitioners

The Alternative Professions have a lot to say about CFS, and illness in general, many in a vague and insubstantial way. It's unfortunate, that as faith in conventional medicine fails, it's easy to believe anything these people say, and often easy to believe some of their far fetched claims.

So, if you follow this route, and I believe there can be benefits, it's vital to use someone with good credentials.

Of the treatments I've used, the following may be of interest. Ultimately they are all rather expensive, which is unfortunate as they have been of benefit, as a way of improving the lifestyle, while not solving the overall problem.

• Osteopath
  Interestingly, there is some research-style evidence by Raymond Perrin for improvement by this treatment which loosens the neck and spine, and back muscles, relaxing the nervous system and aiding the lymphatic system. It is something I find useful as a management treatment, as I get a whole lot of neck and back pain.
  
  
• Chinese Herbalist
  Chinese herbs are a whole new pharmacy of drugs, mixed together based on ancient Oriental practices. The value of these herbs depends heavily on both the practitioner and the supplier who mixes the herbs. For a good batch they helped keep me going longer, but ultimately didn't give a permanent improvement.
  
  
• Acupuncturist
  Another Oriental treatment, which I found of little benefit, other that the opportunity to lie down for an hour.
  
  
• Reflexologist
  This is a very relaxing form of massage, and can ease the pain, and promote rest, but it's so general, it's unlikely to give any long term benefit.
  
  
• Homeopathist
  Made no difference at all, though it must by very dependant on the practitioner. Even so, it seems a bit of a long shot.
  
  
• Yoga
  I've found it pleasant using the gentle stretching of yoga (you don't need to be able to move much) for easing the muscle pain, and relaxing. It may even promote better sleep. Though it's not a solution, if you have enough commitment, try such stretches at home morning and/or evening, to add variety to the day.
  
  

If you come across Reverse Therapy, be careful. The original concept was about addressing negative ideas (much like Cognative Behavioural Therapy - which is mainstream, and with the right practitioner can help management), however, it seems to have moved to a secretitive "think yourself better" concept, which is simply not a good idea.

There are numerous others which claim success (flower remedies, etc) but I am simply too sceptical of their claims to consider them.

Herb & Mineral Tonics

There are loads and loads of tonics, vitamins and herbs. I've tried a whole load, and few seem to be of benefit. There is a school of thought that suggests there is some magic cocktail, but I'm not convinced - if you eat healthily more doesn't really help.

All these suggestions came from various "health" books suggesting how to counter CFS. The few trials there have been are inconclusive, and though there is the odd anecdotal improvement, I suspect they don't help the majority, and they certainly didn't help me.

"Energy Improvers"

• Lecithin
• Kombucha mushroom extract
• Co-enzyme Q10
• Ambrotose
  A food supplement containing a selection of sugars, aloe vera, etc., marketed as an energy food.
  
  

Specific Treatments

• Acidophilus
  A "friendly" sort of gut bacteria - often "unfriendly" gut bacteria is blamed for fatigue, but it seems to be the exception.
  
  
• Bee Venom Honey
  This is a small bee sting supplied in a honey. Before even considering, check you are not allergic ! It mades a little difference in the pain.
  
  An alternative is to have the real bee stings, with which I have heard improvements (though it sounds unpleasant!).
  
  
• Chinese Remedy "Ease the Muscles"
  Specifically for muscle pain relief. Not effective - a proper chinese herbal prescription might be a little better
  
  

Supplements

• Zinc
• Vitamin-O
  (claimed to be oxygen in suspension)
• DL-Phenylalanine
• L-Carnitine
• Evening Primrose
• NADH
• Enada

Tonics

• Mineral Tonics
• Echinacea
• Multi-Vitamins
• Magnetic bracelet

Conventional Medicines

Pain Relief

• Paracetamol
• Ibuprofen
• Diclofenac

Congested sinus/head

• Sinutab
• Nasal spray - triamcinolone acetonide

Fitness

• Exercise
  I really wish I could say that this works. But it doesn't. However, I believe it's important to be as active as possible without using up the daily ration of energy, and it can be pleasant at the time, even though it knocks me back for a day after. I used a gentle 10 mins gym routine once or twice a week, though now tend more to the yoga.
  
  

Treatments which help a little

General

• Magnesium
  This does seem to reduce muscle pain, though not by much. It's been suggested the injections are more effective.
  
  
• Bio Yoghurt
  Yoghurt with active cultures do seem good for the gut, and if not a direct impact on the CFS seem to help the bodies functioning.
  
  
• Aloe Vera
  A general cure all, which surprisingly did seem to have an effect in making above average days better in the early days of the illness, though it seems to have lost its effectiveness.
  
  
• Hyperbaric Oxygen
  Oxygenating the blood under pressure in a pressure chamber, did not improve the muscle pain, which I thought it might, but may have given a small improvement in energy for short periods. Worth a try, but hard to justify in my case after a 6 month trial.
  
  There's also Oxygenated Water (a bottle twice a day). It made a difference for up to 30 mins (probably just the effect of drinking pure water!), but nothing more.
  
  

Pain Relief

• Co-Dydramol
This takes the edge of the pain, without clearing it. Better than nothing, though later one became important.


• Dihydrocodeine
A a top up to the co-dydramol, which became more important especially for pain during non-CFS illness.


• Pregabalin
(previously Gabapentin, or Carbamazipine) Reuces the pain, and improves brain fog, though can increase the fatigure overall.
• Warm Shower
One of the few things that really makes a difference, however, the invigorating effect does not last long, and you need to have enough energy to stand in the shower !.


• Gentle Stretches
These do seems to ease the pain, though not for long, and overdoing them is counterproductive.


• TENS
This electrical stimulation of the muscles does help with pain relief, but only for a short period after treatment. Bit expensive, especially if you can get someone to massage the muscles instead.


• "Infrasound"
This sonic device for relaxing the muscles does help, but again it's not very long lasting.

Sleep Problems

Improved Sleep with Pain Relief

Treatments to investigate a cure

• Thyroxin
  There has been some success in treating patients with low "normal" thyroid function, though I haven't seen a good enough improvement over 6 months.
  
  You need tests for T4 and TSH levels, to measure thyroid activity. Low of normal may be worth a trial.
  
  
• Cortisol
  3 months of a low dose hydrocortisone gave an improvement in the above average days, but didn't stop the bad days.
  
  You need tests for cortisol levels, and a synacthin test to measure adrenal response. Low of normal may be worth a trial.
  
  
• Tricyclics
  There has been some success (see resources) using a mix of low dose tricyclic antidepressants, though I found them extremely fatiguing, and unhelpful.
  
  

More ?