Drugs in the treatment of CFS - always start with tiny doses

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[UPDATED OCTOBER 2023]

The Environmental Approach

The Environmental Approach to treating disease is all about avoiding drugs and treating illness through getting to the root cause, and addressing that root cause. However there are times when drugs are helpful, especially if for example the root cause cannot be eliminated. See Addressing the causes and squashing the symptoms – getting it right

Remember as a general principle that most CFS sufferers, and PWME, react badly to "normal" doses of drugs and any new drug treatment must be started at low levels and gradually increased. This is particularly true of CFS sufferers and PWME with multiple chemical sensitivity. MCS and toxicity go together. See

CFS sufferers and PWME are slow detoxifiers

This means their ability to detoxify drugs is already overloaded and so a small amount of medication goes a long way. They are overloaded for the following possible reasons:

  1. They may be congenitally slow detoxers eg Gilbert's syndrome
  2. They lack the vitamins and minerals essential for detox enzymes to work - one must take my Basic Package of micronutrients as a minimum - see Nutritional Supplements - what everybody should be taking all the time even if nothing is wrong
  3. They are already overloaded from toxins from within the body eg a fermenting gut - see Fermentation in the gut and CFS, Toxic causes of CFS - the more I ask, the more I find!, the links above concerning MCS, Detoxification - an overview and Detoxing - Far Infrared Sauna (FIRS)
  4. They are overloaded by chemicals from outside the body eg caffeine, food additives, prescription medication, pesticides, heavy metals, VOCs etc - see Heavy Metal Poisoning - causes and treatment and links as above.

Symptomatic of this is alcohol intolerance which is almost universal in CFS sufferers and PWME. Please see Alcohol intolerance in CFS - gives us a clue as to the mechanisms of fatigue for more detail.

To improve one's ability to detox see Detoxification - an overview

Pain Killers

The obvious approach is to work out the cause of the pain and tackle this. See Pain.

However, pain killers are often required. There are two main groups - the pure pain killers such as paracetamol, dextropropoxyphene and codeine ( there are combinations, too, for example, co-dydramol is a mixture of paracetamol and codeine), and drugs with pain killing and anti- inflammatory actions such as aspirin, ibuprofen (Nurofen), naproxen, indomethacin and so on.

The groups can be combined for better results. For example, for a persistent pain one could use ibuprofen 400mgs three times daily with paracetamol 2 tabs taken as necessary as well, subject to the usual restrictions on dosage. The pure pain killers only last about 4 hours, and therefore may be no good for night or early morning pain.

The aspirin-like drugs (called NSAIs) have longer duration of action and several are available as slow release preparations. Different people respond to different NSAIs so there are no firm rules. Ibuprofen 400-600mgs lasts 6 hours but is the cheapest. Naproxen 500mgs lasts 12 hours.

For pain which is "neuralgic", ie shooting, the antidepressants can sometimes be helpful. Most CFS sufferers react adversely to normal doses and so it is important to try low doses - initially, say, amitriptyline 10mgs at night building up slowly according to response. Neuralgic pain sometimes responds to anti- epileptic drugs such as carbamazepine up to 200mgs three times daily. See below.

Do you get pain at night? If so, is the bed comfortable? A hard bed is not necessarily a good bed. Try sleeping on several duvets. Some of my patients have benefited from a mattress which moulds to their shape, namely a Tempur call 0800 0111 083 or see Tempur beds Getting good sleep is essential - see Sleep is vital for good health - especially in CFS

Rocking Chairs - use of a rocking chair produces endorphins, natural pain relieving substances, as well as stimulating blood flow. Book one for Christmas!

Remember though, always look for the root cause of pain and treat that! See Pain

Congeners

Many of my CFS and ME patients find themselves sensitive to pain, light, noise, temperature and smells. All these sensations are subjective - that is to say, the degree of pain (or whatever) cannot be measured, it is just how they are felt by the body. This suggests to me that there is some biochemical defect which sensitises CFS sufferers to stimulation from the outside world.

The chemical culprits which do this probably come from inflammation - see Inflammation - this is often the root cause to treat. In its response to injury (a sort of stress), the body produces inflammation. For example, if you are burnt, infected or bruised, the body responds with the same response, namely inflammation. It also responds with inflammation to allergy. It may be that this is how allergic reactions can be so diverse - by sensitising the body to sensations it would normally ignore.

The body is constantly bombarded by sensations, the vast majority of which it ignores. It is only those which are either potentially dangerous or of interest which are allowed to get through. This "gating" system is important - the brain would quickly overload if it had to process every bit of information coming into it.

It is now known that hangovers are caused by breakdown products of drink called congeners, notably found in brandy, cheap rum and red wine. Anybody drinking enough of these will sensitise so much that pulsations of blood to the head (which the body would normally ignore) would be perceived as a throbbing headache. People with hangovers will also tell you that the slightest movement of their head causes headache and dizziness, they dislike bright lights, noises are painful to them and their body aches. Indeed, the symptoms are very like those of CFS and ME. This may partly account for why most CFS and ME patients cannot drink at all - they have enough of their own congeners without wanting any more. See Sensitization of meningeal sensory neurons and the origin of headaches

The root cause here is probably Inflammation and so treat that!

Acid-alkali balance

Bicarbonate can often relieve pain! It is possible that hypersensitivity symptoms are due to acid-alkali imbalance.

To treat this, see Acid-Alkali balance

Antidepressants in CFS

Also see Edge Effect - the Brain in CFS and Using antidepressants in CFS

Anybody with a chronic illness can become depressed and this needs treating as a separate issue. As a general principle though expect to feel ill on "normal" doses of antidepressant. Many of my CFS and ME patients are diagnosed by their GPs as being depressed, put on "normal" doses, feel terribly ill, stop the drug and then get into trouble for being "uncooperative" patients - "If you won't take the drug then I can't help you any more". Whatever is tried needs to be taken in small doses and gradually built up - some patients have been improved by small doses of SSRIs (Prozac like drugs) but the majority are worsened.

Antidepressants are thought to work by increasing the levels of neurotransmitters in the brain. They do so by slowing the rate at which the transmitters are broken down in the brain. I often find low doses of anticholinergics, such as amitriptyline 5-25mgs nocte, helpful. 75-150mgs is a usual dose for depression. 5-15mgs is too low to have an effect on mood so I do not they are "working" for their antidepressant effects.

I quite commonly recommend one of the sedating antidepressants to take at night. (These can also be helpful if hyperventilation is a problem). The key to using antidepressants is to start with small doses. CFS and ME sufferers seem to react to higher doses. This may be because their liver enzymes do not seem to clear drugs from the blood stream as they should (incidentally, this may be partly why CFS and ME sufferers don't tolerate alcohol) or it may be there is a hypersensitivity in the brain. The most sedating anti-depressant is trimipramine (Surmontil), dose range 5-75mgs.

The most commonly used in general practice are amitriptyline (Tryptizol) 5-75mgs nocte and dothiepin (Prothiaden) 25-75mgs nocte - but please be aware that dothiepin has long term toxicity to the heart. See Antidepressants as risk factor for ischaemic heart disease: case-control study in primary care

I have not been impressed by the 5HT reuptake inhibitors like fluoxetine (Prozac) or sertraline (Lustral). They are non-sedating and possibly mildly stimulating - therefore these are not indicated in CFS or ME (they increase the desire, add nothing to the performance, thereby increasing the frustration and rage). The list of side-effects in BNF also distresses me. Also I suspect they are quite addictive although the drug companies are vigorously denying this. I have had patients who get marked withdrawal symptoms if they try to stop them. Furthermore, during the first few weeks of therapy patients must be carefully monitored because the drugs are thought to have caused impulsive suicidal actions in some patients. See Manufacturer admits increase in suicidal behaviour in patients taking paroxetine

See also:

St John's Wort

St John's Wort (hypericum perforatum) has proven antidepressant properties and well worth trying. It can also help with sleep problems in some CFSs (see Sleep is vital for good health - especially in CFS for more advice on getting a good night's sleep!). However I have had two patients who have been made much worse when they took the full dose, so be careful - start on 300mgs daily and build up slowly to 900mgs daily.

5HTP

This is the natural precursor to serotonin (the "happy" neurotransmitter!). Tryptophan, an amino acid, was previously widely prescribed and was just as effective as Prozac at treating depression. However, a batch of tryptophan came onto the market which was contaminated and this contaminant caused several deaths from eosinophillic myalgic syndrome. Even though it was well recognised that the tryptophan was not at fault, it resulted in a world wide ban on sales. The cynic in me tells me this was a cunning ploy by the drug companies to get rid of a cheap, safe and effective competitor. However, we now have 5HTP, which metabolically lies between tryptophan and serotonin. 5HTP is remarkably free from side effects (it is only one step removed from an amino acid, which is what protein is digested into). The usual dose is 100-300mgs at night.


Remember, try to get to the root cause, if there is depression. The illness itself may be the root cause and so treating the physiological causes of your illness may well resolve any depression. See CFS - The Central Cause: Mitochondrial Failure and Overview of CFS/ME protocol

Tranquillisers

These can be useful to help sleep (again, please see Sleep is vital for good health - especially in CFS ) and sometimes as muscle relaxants. The best muscle relaxant is diazepam. It also works well for hyperventilation - see Hyperventilation - makes you feel as if you can't get your breath. It is very useful for occasional use. Also see Fibromyalgia - possible causes and implications for treatment

See also:

Remember, try to get to the root cause, if there is anxiety or sleep issues or hyperventilation. The illness itself may be the root cause and so treating the physiological causes of your illness may well resolve any depression. See CFS - The Central Cause: Mitochondrial Failure and Overview of CFS/ME protocol

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