But I have never been one to mix my words so I will not start now :)
I think this week has to be in my "Top 10 Pain Weeks with Scoliosis" and finally I gave in, went to see the Dr and got myself some drugs! While we are at it, let's throw some facts in here - where does the word drug come from? Well it turns out that the word comes from the Dutch word droog, which means dry because most drugs (medicines) came from dried plants - so there you have it, cool fact for the day hahaha!
I have always had a problem with the donor site as many of you well know (donor site = where they take bone form the hip to place around the spine) but these past few months it seems to have changed and would swell constantly rendering me unable to do anything, making me feel useless and even made me ask myself "why am I here, why am I doing this, what is the point, shoot me now!!!!!!!" I spent the best part of Tuesday laying on my bed crying and screaming because the pain was so intense I just did not know what to do with myself and there is nothing worse I do not think, it is awful when you cannot get your body to be comfortable no matter what the position. I tried sitting on 6 different chairs so I could work, I tried standing and working, kneeling on my chair with my chin on the back rest, tried laying face down on the bed with my bum in the air, head to the side so I had a free arm to type, laying on my side with my legs straight, laying on the floor with my legs over a support or up in the air and nothing I did could offer me a relief and to be honest I just wanted to die!
This pain and limited mobility has crept up on me over the years and has just got worse and worse, everything I have a complaint about with regards to my Scoliosis surgery is the donor site, not the rod or where it is placed, not the surgery itself even, just the fact they took bone from another part of my body and forgot to A) hoover me out properly and B) severring nerves in half across the hip - for some reason this donor site has changed and is now very vulnerable and is prone to swelling, as soon as I feel that it is swelling the pain increases and I cannot move very far at all, fortunately for me, however, I ignored the advice given to me when I was on the stryker frame for 2 weeks back in 1989 and continued to move my legs on a daily basis, you see when I had surgery movement was NOT the key, keeping still was still very much in fashion but being the cow that I am I refused to stop moving my legs and I still believe to this day that is the reason why I have strong legs now and I think will be my saviour for now and years to come - concentrate on those hamstrings people!
Anyway, back to what I was talking about hehehe, I went to the Drs on Monday to see him about heart palpitations, itchy hands and recurrent boils that I have noticed are happening to me more and more these days, I thought something was wrong and after seeing the Dr it could be possible that I am diabetic which would explain the symptoms I am noticing. We got chatting, he took a blood test and I freaked out as usual - I am needle phobic BIG TIME, I see a needle and I cry, I cannot watch them on TV they make me cringe and I cannot watch someone else having a needle, I believe this fear stems from surgery, I was in hospital for 4 weeks and had a needle daily, now you would think that would have made me OK with needles and overcome the fear but it had the opposite effect - Nutty sees needle she legs it!
What is Lyrica? (pregabalin)
Lyrica capsules contain the active ingredient pregabalin, which is a medicine that is mainly used to treat epilepsy. It works by stabilising electrical activity in the brain. The brain and nerves are made up of many nerve cells that communicate with each other through electrical signals. These signals must be carefully regulated for the brain and nerves to function properly. When abnormally rapid and repetitive electrical signals are released in the brain, the brain becomes over-stimulated and normal function is disturbed. This can result in seizures or fits.
Neurotransmitters are natural body chemicals that are stored in nerve cells. They are involved in transmitting messages between the nerve cells. GABA is a neurotransmitter that acts as a natural 'nerve calming' agent. It helps keep the nerve activity in the brain in balance. Pregabalin is structurally similar to GABA and so is thought to mimick its action. This helps calm the nerve activity in the brain.
As pregabalin stabilises electrical nerve activity, it can also be used to treat pain that occurs a result of damage to or a disturbance in the function of nerves (neuropathic pain). It can be used for peripheral neuropathic pain, ie nerve pain in the hands, legs or feet, or central neuropathic pain, eg as a result of a spinal cord injury.
Pregabalin can also used to treat generalised anxiety disorder.
LYRICA is not for everyone. LYRICA may cause serious, even life threatening, allergic reactions. Stop taking LYRICA and call your doctor right away if you have any signs of a serious allergic reaction. Some signs are swelling of your face, mouth, lips, gums, tongue, throat or neck or if you have any trouble breathing, or have a rash, hives or blisters.
In studies, a specific type of blood vessel tumor was seen in mice, but not in rats. The meaning of these findings in humans is not known. Do not stop taking LYRICA without talking to your doctor. If you stop suddenly you may have headaches, nausea, diarrhea or trouble sleeping and if you have epilepsy, you may have seizures more often.
I was prescribed this medicine on Monday 12th July, 2010 and I took 1 pill that evening, my dosages are:
12/13th July 0 Morning 1 Evening
14/15th July 1 Morning 1 Evening
16/17th July 1 Morning 2 Evening
18/19th July 2 Morning 2 Evening
20/21st July 2 Morning 3 Evening
22nd July 3 Morning 3 Evening
The current dosage will be 175mg per day, as I am only on a small dose right now I cannot comment on how I will feel when I am on the full dosage, however, I have started feeling a little strange, not quite sure how to explain but it is like I am in my own little World, I feel happy but I do see stars every now and then, especially when I have taken my evening dosage. The pain is still there but my mobility has increased on mass. I am sitting down at my desk working, walking around a lot better than what I was earlier in the week and do not yet see any side effects although I do feel more chunky in weight. I know that weight gain is a side effect so I am hoping it is not going to be a lot, many patients have said it is water retention and if I stop using this weight gain would go quickly. Today I have noticed aching on my left leg where it meets the hip so I am having to slouch on my chair so this eases. I am even going to attempt a night out this evening and as I have not been out for a long time I am excited at the prospect of being able to socialise.
I would love to hear from other patients taking Lyrica, what their side effects are and if they have found it to be better for their pain management?
Suicidal thoughts, well those who know me would never put me in that category but one also has to appreciate the level of pain I have been experiencing and like I said earlier you start to question what is the point, I am in pain all day long, I get angry, upset and frustrated, I am such a bubbly person that I am finding Scoliosis is stopping me from enjoying my daily activities like gardening, DIY, socialising, going to restaurants, the cinema, walks in the country - all the activities that people without pain take for granted. I see all my friends going out at the weekends, having a good time, going for lunch and dinner, round to a friends for a BBQ or dinner and so on. This just depresses me, I have a wonderful husband and I feel for him too, married life should be more fun surely? He tells me that he would be unhappy without me but I wonder whether he would have a better life with someone who was fit and healthy and can go for walks, go for dinner or the cinema without having to worry about the pain levels due to the drive in the car, the short walk around the shopping centre or the damn chairs! I feel like I am burden sometimes, he has to do a lot for me because I simply cannot manage and this just makes me more sad, annoyed and frustrated. I would never take my own life do not get me wrong but I would be lying if I said I had not thought about it. I think a Scoliosis person goes round in circles many of the time, we try to exercise, keep fit and keep our muscles strong but there is always something getting in the way - PAIN, PAIN and more sodding PAIN! I have tried a lot of therapies in my 21 years of being a Twisted Sister and they all work for a while but it is never forever and this is what I think drives a Scoliosis patient to have suicidal thoughts, you basically get to the end of your pain tether and then enough is enough!
If I had not been part of the Scoliosis community I would feel very alone and this is what pulls me through, there is always somebody worse that I could perhaps guide or help in the right direction and this drive and ambition to help Twisted Families is what keeps me sane and pushes me through my most difficult times. I tell myself a lot "stop moaning it is not that bad" but really the pain is immense, prevents me from walking, standing or sitting, the only option is to lay down and ponder my arse hole! Happy Days........... ;)
Well, tomorrow is another day and figtht we will, I will keep up with my swimming and concentrate on my hamstrings with some of the Yoga moves I can muster, staying strong and keeping together is the way forward, being focused and driven :)
I will keep updating on how I am getting along with the drugs but would appreciate any comments from members here :)
Over and out for now - Simone