Unfortunately I was unable to see Dr ******* last Thursday (21/6/12) through no fault of my own, as he was unavailable due to personal reasons. His appointments were being covered by a Senior Nurse, which was of little use to me, so we had to postpone. I have had telephone appointments with the Senior Nurses before and they are unable to advise or discuss my case because of all the different medications and the severity of my CRPS. Instead they just advise that I need to see Dr *******.
I had a letter through the post yesterday, and the replacement appointment isn't until 1st November. I was particularly keen to see him as I have been struggling particularly badly with the pain in recent months. As you know I recently upped my Morphine from 40mg to 50mg but saw no reduction in pain. I would classify 'normal' pain levels to be an 8 on a scale of 1-10. Doing anything elevates this to completely off the scale.
I simply can't carry on as I am for another 4 months or more. We must try and tweak or add to the medication I take as I am finding it particularly hard to cope with. Doing the smallest thing results in a major flare in my legs and it takes ever longer to recover. My quality of life is even worse which is saying something. I desperately need your help to try and improve this with the hope that I can recover a little quicker or not suffer as badly. I can't walk in the normal sense anymore. All I can do is slowly shuffle, my feet in constant contact with the ground, a few inches at a time, either pulling myself along using grab rails or more usually shuffling along with Eric, our arms around each other. I need to be supported constantly and with each movement the pain worsens. I would be completely unable to cover a fraction of the distance from the front door of your surgery to the door of your room. Unsupported I couldn't move more than a couple of steps without the pain being totally unbearable. Added to this is the fact that my balance is appalling, were it not for Eric helping me get up, move etc I would fall on a regular basis. Kneeling and bending down are impossible.
What follows I hope gives a feel of what life is like, and how CRPS affects me every day. I never have a good day, it is more a case of how bad the day is. Also, why I am so desperate for any extra relief you can give me? Why the thought of waiting till November to see Dr ****** is so terrifying.
[Snipped: example of how going out to Lakeside Shooping Centre affects me]
The only activities I do now are
- Going to Lakeside as discussed above
- Doing some gardening for a short period (one to one and a half hours). Again I am in my wheelchair with legs elevated. We have raised vegetable beds which I can access. Everythign is done by my upper body, leaning across sideways to do anything. The payback from this is worse than going to lakeside.
- Doing exercise using the Wii games console. I can do this sitting in my chair with legs up. Obviously I have to do things that don't need you to move about or stand up, but give an aerobic workout. I have found that 15 minutes is the most I can do without having a major flare up. Realistically if I manage to do this three times a week I'm doing well.
- Having a bath. I include this because it impacts on the pain and other symptoms and is something else that I have to recover from. The temperature and movement of the water exacerbates the pain. Being dried is torture. At present I manage one bath a week.
- Archery - done in the back garden. Done irregularly. Have to have legs down which limits the amount of time I can do this significantly.
- Going to watch speedway at Arena Essex. Utter madness this, I really shouldn't even attempt this any more but it has become something of a 'line in the sand' that CRPS will not take from me. It has taken so much else. By some considerable distance this is the worst activity I can do and can take me nigh on a week to recover from it fully.
- Reading, Sudoku, using iPad, playing video games, watching TV make up the rest of what I do. Essentially anything that can be done sitting in my chair.
Apart from typically one trip out each week my entire life is spent confined to my reclining chair with a duvet over my legs. I cannot get myself up, and now use a commode permanently to urinate. Eric pulls this over to my chair, helps me up, gets me onto it and then back again.
[Snipped: getting up the stairs to have a bath]
I am unable to do anything for myself, being unable to stand unsupported for more than a minute or so. Doing anything whilst standing is impossible, so if I need anything I have to ask Eric to get it for me.
Life is a battle. Getting through each day is a success, doing anything a challenge and done knowing the consequences. Everything will be worse no matter how small the activity.
- Swelling of feet and ankles - remains horrendous but my right foot has caused particular concern recently. Extremely purple and swollen, to the point where I feel as if the skin is likely to burst. The pressure is awful and the ankle locks completely. Blood flow when you press the toe is slow in returning. The foot may be either boiling hot or freezing cold. The hypersensitivity makes it extremely difficult to counter this.
- Burning pains/on fire - this ia a constant issue even when the feet are like blocks of ice. The front of both legs constantly 'ripple' with waves of pain varying in intensity from extremely hot with severe pins and needles to a feeling that they are actually on fire. Anything touching the legs, such a part of the duvet exacerbates this making it impossible to get the legs comfortable. If my legs are down this problem intensifies rapidly. The legs become increasingly mottled and a deeper purple colour.
- Ankle and feet - Both feet along with the swelling are ridiculously hypersensitive to temperature, even the slightest air flow. Even the slightest touch causes me me to cry out in agony. All of the toes are turned over and my right foot in particular is turned inwards because of the swelling around the ankle. I live with constant stabbing pains through the top and sides of each foot and ankle. The nails are extremely brittle and grow extremely slowly. The slightest movement of the foot increases the pain so I do my best to keep them in as comfortable a position as possible. There is still good movement in the ankle, if pushed by someone else the feet move well, I just can't do anything with them myself because of the pain. When my legs are down, the feet become increasingly purple, with similar pain to the front of my legs. The stabbing pains get worse.
- Knees - both extremely swollen, the left being worse as that is the one that is bent when going up and down stairs. I get stabbing pains on the inside of the knee on both sides. The duvet touches these constantly which is extremely uncomfortable. I can't put any weight through either knee, getting up from a chair for example involve me pushing on the arms of the chair whilst Eric pulls me up. I cannot get up unaided. I also need help using the bath lift, with Eric having to lift each leg onto a stool first and then into the water. I support myself constantly with grab rails.
- Exhaustion - this is an ongoing problem. I am completely unable to stay awake for large periods, sometimes losing an entire day to 'on and off' sleep if I have been out or done something. Each period of sleep doesn't last long as the pain breaks through, and I generally feel worse on waking than I did before. Severe headaches, extremely painful eyes (feel as if something is stuck through them, together with severe pain at the back of the eye) are a constant issue.
Anything you could suggest to help combat the above would be very welcome, or perhaps upping the dose of existing medications to see if that helps? I had a couple of specific queries I was going to make when I saw Dr *********, but I wonder if you could act on these. At present I have nothing that I can take which would give an instant pain killing effect. I need this desperately, especially for when I get home. I would only anticipate using this as a last resort.