Scoliosis: Life, Support & Friends

Had terrible pains when I woke up yestreday morning, I was unable to straighten myself without terrible pains lower middle back so I stayed in bed all day, took some ibuprofen 400mg and a heat pad on my back and then later when I felt up to it I had a bath, even wiping my bottom proved difficult. I awoke this morning and felt somewhat better but still walking bent over, unable to straighten myself, so long as I walk very gingerly I am OK, any sharp movements cause havoc!

I was bought a new walking stick by my friend Daisy and it is much better, it is a telescopic one so it is also easier when I am out in my wheelchair it doesn't poke out and stab people in the leg I can fold it away for convenience. My pain in the right leg is still there and I am convinced it is Sciatica as this seems to be common in people with Scoliosis, so perhaps this has finally caught up with me? I have been doing some gentle exercises in the pool and this seems to help the sharp lightning like pain, although this does depend on how I am sitting. My lower back is still the same as was............painful and seems to feel tired a lot, almost as if my body is saying to me "please don't walk, stand or sit anymore". It is a Sunday today and we would usually go for a walk, however, I wouldn't get very far without needing to take medication or a very large drink so now I do not even attempt to go walking, if we want to walk I go in my wheelchair, this way I can b...

We have had a busy Summer and I now have possession of my own wheelchair, although it took some time to get used to the idea that I was using a wheelchair but now I am more settled with the idea and it helps me a great deal. Going out and sitting in various pubs or clubs started to become a problem last year, so much so that it was not worth going out, the chairs are not comfortable for me so I tend to suffer, having my own chair with me means I can relax while I am out and enjoy myself. The last month or so has been more or less up and down, however, I always force myself to get out of bed and get on with the day, this sometimes can be a bit much though. The pain has been there everyday now for a very long time, bending down is such an effort and a strain, I generally bend down holding onto something with one of my legs in the air behind me. This year's pain has been worse as I have not even managed to do much exercise because the pain has placed a burden on that area, although I ...

So far this year I have had many ups and downs and it is only May! I remember a time when I would go a few months before any major pain or discomfort inside. I noticed last week my shoulder muscles were very strained and became painful, I thought perhaps this was due to me using a walking stick which had put pressure on my upper back muscles. I am now a week later and no change except it is now a dull ache and I notice my rod a lot more than I ever did. I never had problems in the upper back before or surrounding the rod area. After close inspection on the scar my husband says it looks as if the skin has moved slightly as the scar used to be a straight line up the spine whereas the top of the scar is now bearing to the left slightly. For a few weeks now I have complained of heart palpitations (feels like a butterfly is flapping its wings over my heart) when I get into bed at night, my ribs have moved (we think) and my hips do not feel as aligned as they did a few months back and I have...

I went for a smear test with my local doctor and explained the problem to him that we had in Seville, he said he had done a lot of his training with a Orthopaedic surgeon so he knew about Harrington Rods and Scoliosis so this was of great benefit to me. He gave me an inspection and all seemed fine, my ovaries looked healthy and their were no cysts, he did say however that my vagina was small and very tight because the muscles were tense, he wondered if that could be the cause of the pain because of the muscles. He has instructed me to get a blood test on the 24th May to see if I am Ovulating, if I am not he feels this could be the root of the pain because that would be swollen.

I went to Seville this weekend to do some sightseeing, we went on the train and that journey was fine, I was comfortable enough and not suffering any pains. I had my walking stick with me which is great for support. That evening my husband and I attempted to have sex and I say attempted because I struggled to perform and it was painful once inside, so painful that I couldn't stand it and we gave up, I have had this before and it was picked up on a smear years back in the UK, the woman said that my vagina had moved round and it was difficult for her to get a swab.

I have been having yet more problems today with my right hand side hip and what I assume is the muscle having a spasm or some kind of cramp. When sitting I cannot lean my head onto my chest without a pain coming from that side of my body, the pain shoots straight up that side of me into my head which makes me pull my head back up. Driving has become more difficult than I ever expected, although I do drive an automatic car which is slightly easier but if I need to look behind me or turn around with my upper torso it becomes difficult for me. I have spent most of this week in bed again (seem to be there a lot these days), continually making sure that I try and get up every hour and attempt to stretch and even do Yoga, however, the pain when trying to get out of bed is awful, I find myself holding my back as I attempt to get up but on my way to standing it almost cripples me to stand and then I cannot get comfortable anywhere then without pain. I never used to get up every single day and ...

I am not in bed all day now although after being sat in a chair or laid down and try to get up I am bent over forward for a while again before I can get moving and straighten up, I stopped taking the Glucosamine in December as instructed by Dr Andreen so perhaps they really did help the discs, I will start them again in March. The pain today is fair and I can cope with it so long as I can lay down at intervals and rest, recuperate the discs and muscles and then off I can go again, a day at the spa is in need I think.

I got up today and actually went out of the house with Chris in the car to see a customer and wore my back brace which kept me upright, I was OK in the car and OK sitting down on a hard chair, walking felt a bit odd but I managed fine. That night I even went out to a bar with my brace on and after a few wines, all the pain was gone..................strange that eh :), although the next day I was violently sick, so take it from me, DO NOT TAKE ALCOHOL WHEN USING DRUGS. They put that warning on the box for a reason and I now know why! Stupid as that may read but I hadn't taken any pills since Friday so I assumed I would be OK to have a few............wrong!

I was feeling absolutely fine, had just finished eating my breakfast, I was sat in my bean bag with my legs slightly apart as my surgeon told me this aides the spinal cord. I tried to get up from the bean bag with plate in hand when I had this awful shooting pain which caused me to fall to the floor and immediately start crying as I was unable to get up, this is the second time in a few months the same muscle has given way, perhaps it was the bean bag who knows. I spent the whole week in bed following that escapade, unable to move even my feet, by day 3 I was able to get to the toilet a lot easier, I had this time been able to get to the toilet with the aide of a stick and I was able to wash myself in the bath tub using my fold out chair to sit on, although it was very painful as I could not hold my body straight I was bent to the side and bent over forward so of course the rest of my body started to ache due to me being in that awkward position. The pain I felt was just a pulled muscl...

Since my awful pain in August I have started to make a come back and even managed to some Yoga each week, I do still find that I walk bent over at the end of the day and the sofa we have I hate and it is getting up from that which doesn't help, I did buy a bean bag and that is much nicer for me. September and October were fairly good for me, no tears anyway! I even went on long walks and I have not been able to do that for a long time, so long as I take my time and sit when I need to and make sure that I have my heat patches with me in case the lower lumbar pain comes back with intense force. However, I did have some trouble with my rod last month and it seemed to be poking further at the skin than ever before and I needed to use Gel on that to stop the pain as that did bring me to tears, I needed my cushion that is made of tiny little balls inside and nice material so it forms any shape as I could not lay down without it as the rod was hurting too much. Because I have not written ...

I have not updated my diary for a while as my symptoms have not changed much, I was still using the wheelchair on Saturday 13th August as walking was a great effort and feelings of pressure built up as if my spine was going to explode, I think that last bought of pain was related to my period as I always suffer in the lumbar when I get my period. Since Sunday 14th August I started to get better but standing up from being sat down I walk bent over for a few seconds before I can force myself to stand up straight and I walk with my legs far apart because I cannot do it any other way. I tried swimming on Sunday also and could only manage 9 lengths which is not very good as before I was doing 20 without stopping, Yoga is out of the question but I am going to try and cycle and see how that feels. I have yet to start my Glucosamine/MSM/Chondrontin formula, perhaps this will help more? I have started questions for my surgeon so we can discuss where to go from here. List of question for surgeon...

Once again felt good this morning but this afternoon I feel sore and in pain again, after my shower I wanted to wrap my hair in a towel so I put my head forward to do so and I couldn't do it because the pain was too much and almost knocked me to the floor. If I am sat down and I bend forward the pain comes rushing and it is in the center of my back, bending down is a chore, I have to bend to the left and then go down and then coming back up again I use my hands on my knees and come up that way. When I lay on my bed the pain starts but once I have been laid for a while it subsides, I have not done any exercise since this started as I simply cannot face it and I am scared of what the pain will be if I try. I can walk fairly OK but it is a great effort and I just feel drained (that could also be the heat). The pain is OK when I raise my legs nothing at all, but all I can feel is immense pressure all the time in the diosc area of my spine, of course it could be radiating pain but who k...

I got up well this morning and as per usual feel great in the mornings, I have not used my wheelchair as much today, if I have needed to get anything I have got up from the chair and walked, although sometimes it is painful to do so and I am still walking tilted to the right and now the muscle has a niggle but if I try to straighten my spine it hurts so I don't do it!

Have been up and about a lot more today, emptied the dishwasher, hung out 2 loads of washing which also means that I have walked up and down the stairs at least 3 times. I also cooked but I noticed a strange feeling in my spine while I was copoking, almost as if everything has shifted, like someone has picked up my top half and moved it slightly to the right, was not able to stand straight as there is that invisible force stopping me again. The main pain is still coming from the right lumbar muscle and it is very noticeable.

After a good night´s sleep I awoke this morning and am in bad pain, I imagine that is from going to a friend´s house yesterday and having all that movement, Chris got me down to the pool today and that was nice, I was not able to swim using my legs nor treadwater but floating was just as pleasant, I did lots of resting today and used the wheelchair all day.

Still using my chair today but I have noticed that when leaning over to the left my breathing feels restricted as if I cannot breathe in much air into my lungs, if I lean to the left I am able to breathe much better. Also when leaning and breathing in to the left I get a pain on the top of my left shoulder blade but when leaning to the right and breathing in I get a pain on my right lumbar muscle. But breathing in when sat central the pain moves to the middle of my lumbar. I went to a friend´s house this evening and he came to collect us, I wore my back brace which was good for the travel journey and it helped fight against the bumps, I did not take any pain killers today and therefore had some wine while I was at their house, the journey was awful and very painful, the roads here are very bumpy and I didn't realise this until I am like this. I also used my microwave heat bag while I was there on my lumbar and that is such a great help to the lower lumnbar muscles when they hurt.

Having a better day today than yesterday but walking is painful and everything is such a great effort, my friend brought a wheelchair around for me and that has been such a great help to me at least I can get around and I am not laying in bed all day long, I can come upstairs and get to the fridge and so on. Pains seems to be reducing for the first time this week.

Still sleeping well with Valium this is never a problem regardless of the pain. I always feel better in the morning as my bed really helps relax my back during the night and I awoke refreshed and pain free, until I start to move, the pain comes back and I although I am feeling better today I am still..........disjointed.

Had another good night´s sleep thanks to good old Valium, feeling a bit better today and was able to wash myself in the shower but still unable to wash my feet myself or get round to my buttocks (this has never been and easy place to clean as the turning causes some stress)on the lower back. I still have feelings of discomfort when breathing especially in the lower back. I am not sure whether to try and get up today because it may add more pain on the muscle, I have tried to stand but this is a great effort for me and I stand bent towards the right clutching my right hip. Being laid like this gives me time to think and reflect over the years of pain that I have dealt with and the discussions I have had with Dr Andreen since last year and feel now I should face my pain head on and perhaps address it in the way that my surgeon feels best. I do wonder if I have the disc removed that is causing the problems that this pain may go away.

After a night´s sleep on Valium I awake in the morning and breathing is slightly difficult, when I brethe in I can feel pain in the lower back which feels central, I take more Nolotil, the pain is the same intensity. My husband helped me shower and wash my hair and then helped me back inot bed, the only way I can get into bed is to lay down on my side and roll or have my husband drag me by the arms, the pain is so much that I feel I could faint at any time therefore I just stay still. My skin is still swollen in this area, especially in the middle at the base of my spine, this area I cannot touch as it sends shooting pains up the middle. When I move my head I can feel that at the base of my spine. I have not had any feelings of numbness nor any tingling, just immense pain especially if I do not take pain meds.

I started to write this pain diary because my surgeon is away and I have had many times when I have had this similar pain, I decided i should start taking notes of how I feel so I can log when I have bad days of pain and see how long I do actually go without any bouts of pain, this may also help me determine if surgery would be a benefit. I have had a chest infection for a week or so and had been coughing for some time, this particular morning I coughed really hard and felt a movement in my lower back, I thought nothing of it as I was walking OK and breathing OK. I walked into Fuengirola which I think is about 3KMS from my house, my back felt OK, my walk was slow and I also kept resting for brief periods of time to gather my strength again, once I had finished in the bank I proceeded to walk home. The pain started then, I was walking bent over double by the time I got to Los Boliches so I got inot a taxi and came home. I managed to get down the stairs on my bottom and collapsed at the ...