Medicine is a science of uncertainty and an art of probability – William Osler
I have just sorted my medication for the week. It’s a job I do every Monday, putting the tablets I will take each day into my pill organiser. Using this system has two benefits. The first is that I can see when I am going to run out of a particular tablet and order my repeat prescription in good time. The second is that I can be sure that I have taken my tablets each day, an important consideration when brain fog descends! I have on several occasions got part way through the day and not remembered whether I’ve taken my tablets that morning or not. If I have taken them, but believe I haven’t, I could take more unnecessarily. Doing so once or twice probably wouldn’t be a problem physiologically, however it is wasteful, adds to my expense and can be a source of anxiety.
It also means that when I travel I don’t have to carry lots of bottles and packets, just one small(ish) organised box.
I take some medication prescribed by my doctor’s and I take some supplements that have been recommended by my doctors and/or fellow suffers.
This is what I take:
Prescribed by my GP and Rheumatologist – Iron, Vitamin D, Amitriptyline.
Supplements recommended by my doctors and/or fellow sufferers and my own research – magnesium, aspirin, vitamin B12, psyllium husk capsules.
I take paracetamol and ibuprofen as needed to combat pain from inflammation and injury.
I have found that this regime helps me to maintain my energy levels and to cope with the pain and fatigue. I have considered each medicine/supplement in more detail below.
NOTE: I take these medicines/supplements after discussion with my doctor. This regime is personalised to me and helps with my symptoms. Other people may have different symptoms and different reaction to these medicines.
I’ve been prescribed iron on and off for most of my life. I took it for the first time as a teenager, then with each pregnancy and several other times in between. I went to my GP (family doctor) about 6 years ago as my hair was falling out, I felt tired and unwell (again). Blood was taken and tested. My thyroxine levels were fine (hair loss and tiredness are symptoms of impaired thyroid function) but my haemoglobin levels were on the low side of normal and my ferritin levels were very low. Ferritin is a protein that stores iron. Low levels are indicative of iron deficiency. I started on a course of iron tablets, and after several months my levels rose so I stopped taking them. A couple of years later I found myself in a similar predicament, ferritin levels were found to be very low again so iron tablets were prescribed. I’d never liked taking iron tablets. They can upset your stomach, make you constipated and turn your faeces black. Not pleasant!! So I have to admit to not taking them as regularly as I should but slowly my ferritin levels rose back to normal levels and with great relief I stopped taking the tablets. A little over two years ago, when my fatigue and pain levels reached an all-time low (or high!?) I went back to my doctor. My blood was checked and, yes, you’ve guessed it, my ferritin levels were low. Very, very low. I started back on the tablets.
My GP prescribes ferrous fumerate, which are kinder on the stomach than other forms. I now take them regularly and am now used to them! When I started taking them I took 1 325mg tablet 3 times a day with meals. My ferritin levels are now a healthy level, however going on our past experience my doctor and I agree that I should continue to take them to maintain my levels. I now take two a day, morning and night.
My rheumatologist also took copious amounts of blood to test and found that I was also very deficient in vitamin D. He prescribed vitamin D3 capsules (800iu) which I take twice a day.
My GP tests my blood regularly to monitor my ferritin, Vitamin D levels and calcium levels. (Vitamin D supplements can increase the amount of calcium in your blood.)
My GP prescribed this for me when I was diagnosed with fibromyalgia by my rheumatologist. Amitriptyline is often prescribed for neuropathic pain. It was originally used as an antidepressant with doses of 150mg and above, however it’s not a very well tolerated drug at high doses so isn’t often prescribed as an anti-depressant now. Lower doses of amitriptyline however have been found to be effective in treating neuropathic pain. I started taking 10mg of amitriptyline and slowly built up to 30mg over a few weeks. The tablets haven’t really had any effect on my pain levels, but what they have done is help significantly with my “irritable” bowel and gut issues and my migraines. Amitriptyline is used to help in a wide variety of chronic illnesses including migraines, irritable bowel disease, overactive bladder, poor sleep and pelvic pain. I did wean myself off them at one point (I did it very slowly over about three months) but found that my gut and migraine symptoms returned after a week or so. I now take 10mg in the evening which is enough to keep my digestive tract working and reduce my migraine attacks significantly, without making me too sleepy.
I take a magnesium tablet twice a day. This hasn’t been prescribed by my doctor but I have discussed it with him. Shortly after I was diagnosed with fibromyalgia I went to a talk given by Dr Kevin White (which I document here). I sat next to a very nice Doctor who mentioned that magnesium had a very beneficial effect on muscle cramps and pain. During my subsequent research I came across a publication health for medical professionals in the US which recommended prescribing 300mg magnesium twice a day to prevent migraines. I thought it was worth a try. I am convinced they help.
About three years ago my GP suggested that I take 75mg aspirin a day as a way of preventing headaches and migraines. I’m not sure how much they helped with those issues but I’m still taking them. There has been a good deal of press coverage about the benefits of taking aspirin that I may as well carry on.
Vitamin B complex with B12.
Following a discussion, on one of the many hypermobility syndrome support groups on Facebook, about fatigue I decided to try taking a vitamin B complex supplement morning and night. I think they are helping, I’ve been taking them for about four months now and my energy levels have been reasonably good.
I have been using psyllium husk for years to help with irritable bowel symptoms. My GP prescribed fibogel (ispaghula husk) sachets but I struggled to drink them and they caused stomach cramps. My research about IBS suggested that psyllium husk might be a better option. I take a psyllium husk tablet (from Holland and Barrett) with breakfast and supper. They are helpful. I notice a difference if I don’t take them for a few days.
I’ve looked at other supplements such as co-enzyme Q10, zinc and garlic. Vitamin C often comes up on forum discussions. However I don’t want to overload my body (or my purse) with supplements and, at the moment at least, I appear to have found a regime that works for me.
I would be very interested to hear about your medicine/supplement regime. What works for you and what doesn’t?