Sorry for the delay with this post, but have been crazy busy lately. Today I want to discuss MS-related fatigue and what can be done for it.
Each patient with MS has a unique set of symptoms. This is because MS can affect many different areas of the nervous system including the brain, spinal cord, or optic nerves. Because of this, one patient may have mostly visual problems, another may have trouble walking, and yet another may have memory problems.
There is one symptom, however, which is nearly universal, and that is MS-related fatigue. Perhaps as many as 90% of MS patients will experience fatigue at some point, and for some it can be a major problem. You will read about the different kinds of fatigue - physical, mental, emotional, etc. - but for most people tired is just tired.
There are a number of suspected causes of MS fatigue:
1) there are chemical changes in the brain, not visible by MRI, which almost certainly play a role.
2) sleep disorders are very common in patients with MS. Spasticity, restless legs, bladder problems, and pain can all disrupt sleep and lead to daytime fatigue.
3) MS patients may need to expend more energy than normal just to move around. This can be due to muscle stiffness or spasticity, weakness, and loss of balance.
4) medications used for treating other symptoms may contribute to fatigue. Examples include baclofen, tizanidine(Zanaflex), and gabapentin(Neurontin), but there are many others as well.
5) temperature effects can be a problem. Many MS patients develop fatigue with heat, whether it is due to hot weather, an illness with fever, or any other cause.
So how do we best combat fatigue? Obviously good quality sleep at night will help a lot, and if your schedule permits daytime naps, that’s fine too as long as you limit them to no more that an hour or so. Energy preservation also helps, but only to a point. It’s OK to take the elevator instead of the stairs once in a while, but if you do it too often you will get out of condition and it will backfire. In fact, a good exercise routine will help a lot - the hard part is the getting started.
Medications can also help. I like to try amantadine first, it’s an older drug, an antiviral, antiParkinson’s medication discovered by accident to help MS fatigue. No one knows how it works but it’s very safe and inexpensive. I give it twice a day, morning and after lunch. It can cause a rash called livido reticularis, especially on fair-skinned people, but it’s not generally serious. It’s also the only prescription drug with research evidence that it really works.
Provigil and Nuvigil are two newer drugs being used for MS fatigue. They were developed for the treatment of other conditions, such as narcolepsy. Unfortunately they are not FDA-approved for MS, and are quite expensive, but some people do find them helpful. They are taken once or twice a day, and the side effects include allergic reactions which can be very severe. There is some controversy over whether or not they are habit forming.
The stimulant drugs, including Ritalin, Straterra, Adderall, Concerta, Vyvance and others can be helpful as well. These drugs are tightly controlled by the DEA and usually cannot be refilled by phone or fax. They may cause weight loss, palpitations, and high blood pressure, but their cardiac risks seem fairly small. They are also potentially habit forming, however, and like Provigil and Nuvigil they are not FDA-approved for MS.
Recently I have learned that an OTC supplement called Acetyl-L-carnitine, taken at a dose of 1000mg twice a day, has been shown to help up to 50% of patients with MS fatigue. I do not have much personal experience with it yet, but I have been recommending it and will keep you updated. Diarrhea is a possible side effect, and as with all supplements, it is not regulated as to content, purity etc..
The bottom line is that there is no magic pill or treatment for this, and each person has to figure out what works best for them. I suspect that more treatments will be coming soon, since this is a lot of research going on in the field right now.