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| Christmas Aftermath |
I noted yesterday that in the Xmas aftermath, I was having to wear sea sickness bands to lie on the bed. No, I hadn’t had a drink – not even one drop.
The reasons (beyond the fall which hurt my knee and the course [NHS expert patient, ironically - I was self-managing more effectively before that setback] which screwed my whole routine and caused a flare) were in small part [due to] deviating from my usual restrictive diet and mostly to do with having to go out on the 23rd and then twice on the 24th to get my prescription of Gabapentin - that had been outstanding since the 15th - and then, foolishly, taking it.
This was because, after 2 years of begging, I finally got some medication for pain: Gabapentin. Though, if I were superstitious, I might conclude that fate does not want me to have this, because of the lengths I’ve had to go to to get it:
Once the pain levels became unbearable in the UK, in September 2008, I went to the GP, who prescribed the amitriptyline and referred me to a rheumatologist, who confirmed my diagnosis of fibromyalgia and ME/CFS, but could offer no more in terms of treatment than to tell me to keep taking the amitriptyline. Eventually, I got the prescription changed to fluoxetine (Prozac), but that does nothing for pain and I could see I was really getting nowhere, so I changed GP. The new one wouldn’t prescribe anything for pain until a specialist recommended it and referred me to the pain management service. In August 2009, I was assessed at one facility, who thought a different facility were better equipped to help me, so I was referred on. I got assessed again in early 2010 and an appointment in the middle of the year, only to be told that they cannot prescribe at all!
After all that, in desperation, I asked the GP for another referral back to the rheumatologist to a) carry out an MRI scan on my constantly painful hip, b) to investigate the severe pain and loss of movement in my neck and c) to see if she would make this “magical” pain drug recommendation to my GP. She did all of those things and I’m currently waiting for a follow-up appointment to find out the results of the MRI that was done just before Xmas and an X-Ray on my neck.
So on December 15th, I went to the GP to see if she’d got those recommendations and finally got a prescription for the Gabapentin. Went to the chemist to find … they didn’t have any, so as I was going for the MRI the following day and wouldn’t have been able to go back again as they asked (a mile walk there and a mile walk back), arranged for them to deliver the gabapentin when it was available.
By December 23rd, it still hadn’t arrived and I was losing all hope of it arriving before Christmas – I was, naively, hoping for it to relive some pain so I could possibly enjoy the holidays – so I walked up to the chemist to chase it, only to discover that they STILL hadn’t had a supply in (snow was blamed) and yet again, was asked if I could come back the next day, Christmas Eve.
I’d specifically wanted to avoid having to go out on Christmas Eve and had done my last bits of shopping on the 23rd, because I didn’t want to repeat the bad flares that exhaustion + cold weather + extra holiday cooking, etc., have caused in previous years. I’d planned to get a taxi home on the 23rd, to try to mitigate the exhaustion, but there weren’t any available, so I’d had to trudge home, in the ice, carrying far more shopping than I could really manage and, consequently dropped exhausted when I got home and spent a sleepless night in terrible pain.
Nevertheless, on Christmas Eve, I trudged back in the ice to the chemist, asked for my prescription, was handed the familiar green paper bag and walked home.
You don’t tend to open the bag in the chemist: you accept the prescription you are handed, on faith. That’s something I won’t be doing ever again! When I got home, I found that it wasn’t the Gabapentin, it contained Fluoxetine. Back in August I’d had to go back and forth to the doctors umpteen times because a prescription went missing. At that time I did NOT have (had not yet made arrangements) for the surgery to send my prescriptions to a chemist, so it was definitely the surgery who “lost” it … So, they must have sent it to the chemist without agreement, because this was it, at the chemist all that time.
So I phoned the chemist to see if they had the prescription for the gabapentin. It had JUST come in, so it hadn’t been there when I’d called earlier. I gave the pharmacist an hour to get it made up and ordered a taxi to take me, wait for me while I got the prescription and then bring me home again. Just having to go out again was enough, I couldn’t possibly have walked all that way for a second time in the same day. Of course, it cost an arm and a leg, but I hoped that some pain relief would “relieve” the shock of this extra expenditure.
On Xmas day in the morning, when I took it the first time, it gave me such an awful high – very unpleasant sensation, never before known with a legal drug. Trying to cook Xmas dinner with my head in the clouds was no fun either. I wouldn’t have minded if it had done something for the pain, but it didn’t. So, Christmas Day, I started off knackered, I started on a new drug – which gave me a recreational quality, but very unpleasant “high” – and also started on a week of eating all the wrong things. It was a recipe for a bloody disaster, wasn’t it?
When I read the label, I discovered that the gabapentin contains lactose and I’m lactose intolerant. You’d think it would be such a small amount it wouldn’t cause a problem, but I get relevant symptoms as soon as I’ve taken it, so I’m sure that it does and is adding to the increased severity and incidence of the IBS attacks. On the second or third day of taking it, I started getting severe chest pains and tightness. At one point I was lying in bed and I could hardly breathe (and couldn’t move to get help.) Apparently, this is a possible side effect of the Gabapentin and one that I should have sought immediate medical attention for. HOW?
It’s certainly not the first time I’ve had chest pains and whilst I am sure that various drugs have sparked off new episodes, I think these chest pains are all part of ME/CFS. These symptoms; chest pain, shortness of breath, tightness of the chest, palpitations, are also part of the cardiac arrhythmia - ectopic beat (or cardiac ectopy), also known as Premature Ventricular Contraction (PVC) – that was discovered when I had a 24 hour ECG back in October. Among other data, one reads that “In a PVC, the ventricles contract first, which means that circulation is inefficient.” This makes sense, finally, with my generally low blood pressure, the orthostatic intolerance and low blood volume (that cause blood pooling and pain in my legs). The trouble is, I’m already taking all the medications, supplements and dietary modifications that could help with it.
And, as (amongst other things), mitral valve prolapse (known to be co-morbid with fibromyalgia/me/cfs), magnesium and potassium deficiencies, adrenaline excess, lack of sleep/exhaustion and stress (all also related to / symptoms of fibromyalgia/me/cfs) are cited as possible causes of PVC, it’s all a bit “chicken and egg”. Did the PVC cause the fibro, or did the fibro cause the heart arrhythmia? Will I ever know? I doubt it. A cure? Even more doubtful.
The *price* for enjoying turkey, trimmings and sweet things (a LOT less of them than most people will have had) over the Christmas period was that I suffered alternate days of constipation and it’s attendant insupportable migraine-like headache and days with the exact opposite, along with the equally unbearable pains and spasms (like labour contractions) of IBS. Of course, I took prescribed medication to solve the IBS attacks, so the next day I wouldn’t be able go again and would need constipation relief, pain relief pills ... Rinse, repeat.
Once the pain levels became unbearable in the UK, in September 2008, I went to the GP, who prescribed the amitriptyline and referred me to a rheumatologist, who confirmed my diagnosis of fibromyalgia and ME/CFS, but could offer no more in terms of treatment than to tell me to keep taking the amitriptyline. Eventually, I got the prescription changed to fluoxetine (Prozac), but that does nothing for pain and I could see I was really getting nowhere, so I changed GP. The new one wouldn’t prescribe anything for pain until a specialist recommended it and referred me to the pain management service. In August 2009, I was assessed at one facility, who thought a different facility were better equipped to help me, so I was referred on. I got assessed again in early 2010 and an appointment in the middle of the year, only to be told that they cannot prescribe at all!
After all that, in desperation, I asked the GP for another referral back to the rheumatologist to a) carry out an MRI scan on my constantly painful hip, b) to investigate the severe pain and loss of movement in my neck and c) to see if she would make this “magical” pain drug recommendation to my GP. She did all of those things and I’m currently waiting for a follow-up appointment to find out the results of the MRI that was done just before Xmas and an X-Ray on my neck.
So on December 15th, I went to the GP to see if she’d got those recommendations and finally got a prescription for the Gabapentin. Went to the chemist to find … they didn’t have any, so as I was going for the MRI the following day and wouldn’t have been able to go back again as they asked (a mile walk there and a mile walk back), arranged for them to deliver the gabapentin when it was available.
By December 23rd, it still hadn’t arrived and I was losing all hope of it arriving before Christmas – I was, naively, hoping for it to relive some pain so I could possibly enjoy the holidays – so I walked up to the chemist to chase it, only to discover that they STILL hadn’t had a supply in (snow was blamed) and yet again, was asked if I could come back the next day, Christmas Eve.
I’d specifically wanted to avoid having to go out on Christmas Eve and had done my last bits of shopping on the 23rd, because I didn’t want to repeat the bad flares that exhaustion + cold weather + extra holiday cooking, etc., have caused in previous years. I’d planned to get a taxi home on the 23rd, to try to mitigate the exhaustion, but there weren’t any available, so I’d had to trudge home, in the ice, carrying far more shopping than I could really manage and, consequently dropped exhausted when I got home and spent a sleepless night in terrible pain.
Nevertheless, on Christmas Eve, I trudged back in the ice to the chemist, asked for my prescription, was handed the familiar green paper bag and walked home.
You don’t tend to open the bag in the chemist: you accept the prescription you are handed, on faith. That’s something I won’t be doing ever again! When I got home, I found that it wasn’t the Gabapentin, it contained Fluoxetine. Back in August I’d had to go back and forth to the doctors umpteen times because a prescription went missing. At that time I did NOT have (had not yet made arrangements) for the surgery to send my prescriptions to a chemist, so it was definitely the surgery who “lost” it … So, they must have sent it to the chemist without agreement, because this was it, at the chemist all that time.
So I phoned the chemist to see if they had the prescription for the gabapentin. It had JUST come in, so it hadn’t been there when I’d called earlier. I gave the pharmacist an hour to get it made up and ordered a taxi to take me, wait for me while I got the prescription and then bring me home again. Just having to go out again was enough, I couldn’t possibly have walked all that way for a second time in the same day. Of course, it cost an arm and a leg, but I hoped that some pain relief would “relieve” the shock of this extra expenditure.
On Xmas day in the morning, when I took it the first time, it gave me such an awful high – very unpleasant sensation, never before known with a legal drug. Trying to cook Xmas dinner with my head in the clouds was no fun either. I wouldn’t have minded if it had done something for the pain, but it didn’t. So, Christmas Day, I started off knackered, I started on a new drug – which gave me a recreational quality, but very unpleasant “high” – and also started on a week of eating all the wrong things. It was a recipe for a bloody disaster, wasn’t it?
When I read the label, I discovered that the gabapentin contains lactose and I’m lactose intolerant. You’d think it would be such a small amount it wouldn’t cause a problem, but I get relevant symptoms as soon as I’ve taken it, so I’m sure that it does and is adding to the increased severity and incidence of the IBS attacks. On the second or third day of taking it, I started getting severe chest pains and tightness. At one point I was lying in bed and I could hardly breathe (and couldn’t move to get help.) Apparently, this is a possible side effect of the Gabapentin and one that I should have sought immediate medical attention for. HOW?
It’s certainly not the first time I’ve had chest pains and whilst I am sure that various drugs have sparked off new episodes, I think these chest pains are all part of ME/CFS. These symptoms; chest pain, shortness of breath, tightness of the chest, palpitations, are also part of the cardiac arrhythmia - ectopic beat (or cardiac ectopy), also known as Premature Ventricular Contraction (PVC) – that was discovered when I had a 24 hour ECG back in October. Among other data, one reads that “In a PVC, the ventricles contract first, which means that circulation is inefficient.” This makes sense, finally, with my generally low blood pressure, the orthostatic intolerance and low blood volume (that cause blood pooling and pain in my legs). The trouble is, I’m already taking all the medications, supplements and dietary modifications that could help with it.
And, as (amongst other things), mitral valve prolapse (known to be co-morbid with fibromyalgia/me/cfs), magnesium and potassium deficiencies, adrenaline excess, lack of sleep/exhaustion and stress (all also related to / symptoms of fibromyalgia/me/cfs) are cited as possible causes of PVC, it’s all a bit “chicken and egg”. Did the PVC cause the fibro, or did the fibro cause the heart arrhythmia? Will I ever know? I doubt it. A cure? Even more doubtful.
The *price* for enjoying turkey, trimmings and sweet things (a LOT less of them than most people will have had) over the Christmas period was that I suffered alternate days of constipation and it’s attendant insupportable migraine-like headache and days with the exact opposite, along with the equally unbearable pains and spasms (like labour contractions) of IBS. Of course, I took prescribed medication to solve the IBS attacks, so the next day I wouldn’t be able go again and would need constipation relief, pain relief pills ... Rinse, repeat.
There are only so many hour-long, gut-wrenching bathroom visits one’s body can stand. It left me feeling weak and ill, just as if I’d had serious food poisoning. Only as long as I stick to my boring meat free, dairy free, wheat free, gluten reduced, chemical free (and consequently often flavour free) diet, mostly, can I keep attacks down to a minimum. This means around weekly is most usual. How often did I get these attacks when I lived in Tenerife? Once or twice, that I can remember, in all 16 years and it certainly didn’t ever need medication.
And, so far, I’ve suffered worse pain in the last few days than ever before.
How much of the increase in all of my symptoms is down to the climate in the UK not agreeing with me, the considerably higher levels of pollution; in the air, in a closed and carpeted house, the food, or the numerous additional stresses I live under here, I really can’t say, but it’s VERY hard to deal with, because, all put together; the fibromyalgia pain from head to foot and in every muscle and joint, the chest pains, the (medical) fatigue, the constant ups and downs in the gastro-intestinal department, the ever-present nausea, the constant fog in my brain that makes me feel like I’m getting Alzheimer's, plus dizzy spells, shaking, orthostatic intolerance that has me swaying like a drunk every time I try to stand for more than 30 seconds or so and that mean I often cannot even sit up, leaves me with a quality of life that … Well, it has no quality. It’s hardly even a life.
How much of the increase in all of my symptoms is down to the climate in the UK not agreeing with me, the considerably higher levels of pollution; in the air, in a closed and carpeted house, the food, or the numerous additional stresses I live under here, I really can’t say, but it’s VERY hard to deal with, because, all put together; the fibromyalgia pain from head to foot and in every muscle and joint, the chest pains, the (medical) fatigue, the constant ups and downs in the gastro-intestinal department, the ever-present nausea, the constant fog in my brain that makes me feel like I’m getting Alzheimer's, plus dizzy spells, shaking, orthostatic intolerance that has me swaying like a drunk every time I try to stand for more than 30 seconds or so and that mean I often cannot even sit up, leaves me with a quality of life that … Well, it has no quality. It’s hardly even a life.
In the meantime, I’m trying Venlafaxine (after finding that Fluoxetine (Prozac) makes me sweat like a pig) as I’d read Venlafaxine is well-tolerated (and prescribed to treat orthostatic intolerance and postural orthostatic tachycardia syndrome that I suffer badly) and, can help reduce the severity of hot flushes in menopausal women. Apparently, Venlafaxine has a similar effect to amitriptyline, which is what is always first prescribed (off-label) for fibromyalgia (because it’s so cheap) in the UK, but which I suffered really bad side-effects with.
Tuesday, 28 Dec 2010
Part of the problem with the Gabapentin is probably because the capsules contain lactose and I’m lactose intolerant, but even solving that (the capsules don’t contain lactose), the rest of the side-effects are too severe for this to be viable. On the 2nd or 3rd day of taking it, I started getting severe chest pains and tightness [in my chest] again. Later, I read that I should have got urgent medical attention, but I was lying helpless and couldn’t move. It certainly was the cause of more nausea, which I had for years, but finally managed to control a few months ago; made my vision problems worse; gave me horrible headaches and back ache, plus increased trembling and shaking – this is all on top of the pain and usual symptoms. And it’s making me even more confused and foggy than usual.
Friday, 31 Dec 2010
The last day of 2010 and the culmination of the Christmas period is not one I’m going to forget in a hurry, because of a pretty bad attack of IBS-like symptoms. Deviation from my normally restrictive diet over the holidays had meant alternate days of either intolerable constipation or crippling sh*ts. Today was one of the latter. After beginning as seemingly normal suddenly the wind built up, there was a great rumbling from within and then a huge emission of ‘molten lava’. When it seemed to be over, it would start up again. This was repeated, over and over, for 45 minutes. This had happened on alternate days over Christmas, sometimes lasting for more than an hour. The pain was unbearable and the episodes left me weak and ill, just as if I’d had bad food poisoning. Today the stomach ache is so bad it left me no alternative but to lie down and sleep it off.
