The biggest symptom that I have suffered from in the last ten years that I have had ME has been punishing, disproportionate fatigue. Recently, though it has been overtaken by pain. All the old aches, headaches and migraines that I have had for years as part of M.E, but also sharper pain in my muscles especially when touched or pressed, and burning pain through my arms, legs, hands and feet. I’ve already exhausted a few types of medicines over the years, having worked my way through the standard painkillers, (paracetamol, ibuprofen) Tricyclic Antidepressents (Amitriptyline, Dosulepin, etc) which are used for their pain killing properties rather than for depression, SSRIs, (Prozac) and Opiates. (Codeine, Dihidrocodeine) There are a good few that I have tried but can’t remember too.
I never had much success in quelling the headaches and muscle aches before, but this new pain is even more persistant. I have reached a point where I am taking paracetamol, naproxen, and codeine but still at points can be found curled up in my bed shaking with pain.
When I saw my doctor on Monday she took me through the flowchart of drugs for treating neuropathic pain and the next on the list was pregabalin, otherwise known as Lyrica. (Note: Lyrica, not Lycra. My pain treatment is not stretchy obscenely tight clothing.)
When I told other people that I would be starting Lyrica, I got some very strong reactions. Several people told me that they had had a horrible experience taking it and would never advise anyone else to do so. Several others told me that it was alright for them, and some told me that I was very lucky to get it and that they were jealous!
So what could be wrong with Lyrica? Well it certainly isn’t a drug that you turn to first. In fact you have to be quite seriously ill before a doctor will even consider giving it to you. It can be very effective in the treatment of pain but the drawback is that a great many people taking it suffer side effects. Wikipedia lists these as follows:
- Very common (>10% of patients): dizziness, drowsiness
- Common (1–10% of patients): visual disturbance (including blurred vision, diplopia), ataxia, dysarthria, tremor, lethargy, memory impairment, euphoria, constipation, dry mouth, peripheral edema, loss or decrease of libido, erectile dysfunction, weight gain
Quite a list, that as many as 10% will encounter, with even more becoming dizzy and drowsy. Stopping taking Lyrica can also be quite a problem:
After stopping long and short-term pregabalin treatment, you need to know that you may experience certain side effects. These include, trouble sleeping, headache, nausea, feeling anxious, diarrhoea, flu-like symptoms, convulsions, nervousness, depression, pain, sweating, and dizziness. (Taken from the Patient Information Leaflet)
I already knew this information at the time I had been prescribed the medicine, but after I announced on Facebook that I would be starting to take it, I got a new rather panicked message in reply.
The side effects are horrendous, you wouldnt even be able to do any writing as your brain will not work. sure , it did take away all my pain which was wonderful but i was left as a vegetable, not even able to watch tv! i was put on them by the pain clinic but my gp took me off them and it took months to come off them as they are so potent! and the pain came back with avengance! but on good days i do have a brain ! it still only you that can decide and hey, you may be the fortunate one that gets all the benefits and none of the side effects. i do understand your pain but it was a disaster for me and another friend who was prescribed it for deep seated pain. it was awful! i was a zombie! life was not worth it. i couldnt walk or talk straight so was on the sofa all day every day and i didnt even get to the dosage that they wanted me on….but i did sleep!
Not a hopeful outlook then. However, I considered this carefully. As far as I can tell, less than ten percent of patients get these side effects, which means that 90% don’t. I think, on the whole, the possiblity of escaping the pain is worth the risks of trying it for a while, even if I then have a few more days of problems as I come off of it. If it kills my mind, there is no question, I will stop taking it. I would rather be stuck in my bed crippled by the pain but still be able to think and communicate than to be a mindless zombie but not in pain.
Today I had my first side effects. I was trying to get out of my flat and into a car. I was distinctly wobbly as I left the house, using my walking stick without even complaining (I hate the bloody thing) as I was that unstable. When I got to the car I started to turn to try and sit down and I collapsed. My legs went form under me, my world was spinning round and I was falling, grabbing on to the car and completely failing to stay upright. Having decided that going to the train station to continue with the journey as planned was not the best idea, my dad offered to drive us there instead. (100 miles each way! My dad is awesome.) We stopped at my parents house on the way for a a bit. I tried to take my coat off before sitting on a sofa, and once again collapsed, face forwards into the sofa. Fun.
I’m hoping the wobbliness will cease, but tomorrow is a busy day with a funeral and a family gathering to deal with and I am quite worried that I am going to have to be more or less carried everywhere.
What I need to focus on is that point in a few days time when the Lyrica starts to work, and I might, if I’m lucky, be rid of the endless pain that is burning and tearing at my body. Then it might just be worth it.