The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.

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Anxiety

I have always been quite an anxious person, culminating in an anxiety overload and a major bout of depression back in 1999. It took me a long time to get a grip of them through Cognitive Behavioural Therapy and pharmaceutical means. For a very long time I had considered anxiety and depression a thing of the past and then Friday 8th August my old foe anxiety / panic attacks came back with a vengeance.


Those of you who are regular followers of my blog know that I have been having treatment for B12 deficiency. Anxiety and depression can be a symptom of low B12 levels. That wasn’t the case with me, my symptoms were pins and needles in my hands and pains in my legs. Both symptoms were worse on my left hand side.


To treat the B12 deficiency I had to have injections every other day (or as close as I could) of B12. My initial treatment was limited to 6 injections which doesn’t follow any of the best practice guidelines but seems to be how those who are B12 deficient are treated in the county in England where I live. It has meant enormous upheaval for both myself and my husband getting me to and from appointments. Not helped by the fact my dogs have a voracious appetite for furniture if they are left alone. Some days my husband has been able to come with me, other days I have had to take a taxi alone.


Fridays injection would have been my fourth with two more scheduled the following week. I was going to take a taxi down to the surgery and if possible get one back home. All was going well until a few hours before I was going to leave for my injection. Out of the blue I was filled with a sense of panic. This is quite unlike me and the more I tried to calm myself down the worse it got. I simply did not want to deal with people or to leave the house. I had no knowledge of what the perceived dangers that lurked outside were, I just knew I could not go. As silly as that may sound to people that have never experienced that kind of thing.


The night before had been filled with nightmares, I had slept but on several occasions I was woken up by the sheer terror of what had played out in my dreams. The first dream I remember was I was involved in a plane crash. I am terrified of flying a phobia that has got worse over the years, so for me to be on a plane in my dreams is quite laughable it just wouldn’t happen. The next dream was my house was enveloped in a swarm of bees. I was alone in the house and no matter how quickly I ran from room to room shutting doors and windows the giant bees (they weren’t normal sized ones) threw themselves against the glass. I was filled with panic as I searched every room for my dogs trying to ensure their safety. As the swarm entered the house the dream obviously became more than I could handle and I awoke (again) with a start. Not a pleasant night….which has been followed with a night of insomnia what joy!


I mentioned my vivid dreams to my husband the following morning who remarked it was odd that I had suffered from nightmares as I normally never remember my dreams. Looking back now something was obviously troubling my unconscious mind. The plane crash was obviously my overly acute fear for my safety. It could be suggested that the plane some how signified the medical situation I was going to be in the following day but I think thats a stretch. The swarm of bees I think signified the danger of the outside world. Shutting doors and windows was a way of protecting myself from that danger. Who knows these are just the ramblings of someone who hasn’t slept so far tonight. Its coming up for 2am in the UK as I write this.


As I said earlier I felt fine in the morning and really didnt give the dreams anymore thought until discussing the days events with my husband later in the evening. 


I loath feeling anxious about nothing specific. I couldn’t tell you what the threat outside was that so filled me with dread. I sat on the sofa for over an hour wondering what the hell to do. I didnt want to miss the appointment, mess the dogsitter around or give in to my fears. No matter how hard I battled I just couldn’t get in control of my fear. In the end I rang my husband at work something I try and avoid doing as personal calls are frowned upon. I talked through what was going on in my head. 


Luckily my husband has also suffered from panic attacks and anxiety in the past. He asked me if I knew what I was afraid of, told me that cancelling wasn’t the end of the world. He would now take me to all my appointments and we would manage. It was so nice to hear his calming voice at the end of the phone. He asked me if I wanted him to come home, which I didnt need because the anxiety was about leaving the house. As long as I remained inside these four walls I felt safe.


By the time I had called my husband and cancelled everything else I was exhausted and slept for 2 hours solid. Its probably why I am unable to sleep tonight. I felt a wave of calmness start to wash over me and when I woke up I felt like I was back to being me again. The whole thing had seemed very odd and surreal. I have had that kind of fear before but not for many years and it troubled me as to why it had suddenly raised its ugly head again.


CBT taught me to analyse and explore my feelings so I spent the rest of the day trying to figure out what had caused this reaction. My husband had already told me during my call to him he felt it had been triggered by a mixture of tiredness and the fact that I so very rarely go out alone. Plus I was going out alone into a medical setting. Medical settings always trigger an element of fear but I can normally control it. The more I thought about it the more I had to agree with him.


For normal people going out by yourself is something you do without a backwards glance. Before I got sick I would go out regularly unaccompanied. I would drive to see my family and friends. I would pop into town to do some shopping. Leaving the house by myself was not an issue. Since 2008 I have very rarely left the house alone. It has almost become that my husband is now my safety blanket, or anyone else who is with me when I leave the house. I feel very vulnerable now when I am in the big wide world. Before I felt I could handle myself in any situation. Now the world is full of fear for me. Fear that I could pass out or fall whilst out in public. Fear of being abused because of my disability. Fear that if someone should physically attack me I wouldn’t be able to fend them off. Things I rarely considered when I was well unless I was walking in an unlit car park late at night going back to my car.


It is not my fear that stops me leaving the house it is my physical disability. I need a wheelchair if there is going to be any walking involved or if there will only be a tiny bit of walking involved I can get away with crutches. Crutches come with a price though as my shoulders, elbows and collar bones complain for days on end afterwards. So with my limited mobility I always need someone with me. Someone to push my wheelchair or someone to drive me right to the door of wherever we are going.


Going out accompanied I never have any fear. I don’t feel vulnerable or fragile or less of a human being. Alone I feel all of those things.


In the last few weeks I have been out of the house more times than I have been in months. I was ok the first time I went out alone but I just couldn’t do it Friday. I am angry with myself for being such a coward and giving into my fear. I am annoyed that I didnt put my CBT into practice and try and rationalise the fear. 


The problem is CBT only really works if you know what specifically it is that you are afraid of. That way you can explore the issue, rationalise your fear, work out “well what’s the worst thing that could happen?”, how you could prevent the worst thing from happening and how realistic it is for it to actually take place. When the fear is unspecified you don’t know what the worst thing is. There was no voice in my head telling me what I was afraid of. I just knew I didnt want to leave the house and the thought of it was making me anxious to the point of being tearful.


Sometimes I really don’t appreciate all that I have been through since getting sick. I dont give myself enough credit for achieving the things I have. I am determined not to let this little set back make it impossible for me to leave the house again. I will go out alone again just not for a little while whilst I work through what the possible triggers were and why the fear was so all consuming.


I just need a little time to build my confidence back up and move on from the events of Friday.

 

B12 Deficiency

I visited my gp on Wednesday 30th July at his surgery. Those of you who are new to this blog will probably think that its not a big deal. For me its a huge deal. Most of my conversations with my gp are held over the phone because visiting his practice is just too stressful and exhausting.


Due to my previous medical care (or lack of) I have been left with a fear of medical staff. I wouldn’t class it as a phobia as its not so extreme that I will not go, its just things have got to be pretty bad for me before I will consider a visit.


The night before even a routine blood test will be spent sleeplessly. I have to rehearse every aspect of any topic of conversation that may crop up. I have to be prepared because without being prepared there is a lack of control. 

 

My gp is lovely, my hospital consultant is lovely but a visit to either of them fills me with dread. You see I used to have a lovely neurologist until he decided that I didn’t have myasthenia gravis but instead had psychological issues. This then coloured every interaction I had with medical personnel, who suddenly became very cold and uncaring. I now fear that at a moments notice this could happen all over again.


Without my gp and my consultant I would have no one in the medical world that will fight my corner and actually believe my diagnosis. Even though I have the tests to prove I have severe autonomic nervous system dysfunction, I am yet to find a doctor outside of my consultant and gp that actually believes this diagnosis. They believe that I have Ehlers Danlos syndrome hypermobility type but dysautonomia seems a step too far outside what they learnt at medical school.


 Wednesday was a tough day. I needed to speak to my gp about the fact that my back pain has ramped up to such an extent that I get no relief from it other than sleep and even then it will wake me up.


To prepare for my appointment I downloaded and printed off outline drawings of the human body ( you can find the ones I used here ). I printed off two copies so that I could colour in where the pain is on a good day and where I feel it on a bad day. That way I guessed I wouldn’t have to strip off. I did wear matching underwear, which my friend Ellie always reminds me, that in a film that means you are going to be the one bumped off. No one who gets murdered in a film seems to be wearing greying, saggy knickers and bras? I dont know why its not very true to life. 


I digress, so my pictures were prepared a week in advance. Under each picture I also wrote a short summary of what the pain was like on each area of the body plus any extra information I felt was pertinent. That way if my mind went blank I could refer to the information I had on the sheet.


As my husband wasnt coming with me I was having to make it to the surgery under my own steam. I was going to book a taxi however some good friends stepped in and offered me a list there and back. I was however going to have to use my crutches instead of my wheelchair as I can’t self propel. Which is probably why I am in agony with my shoulders and collar bones today.


It didnt go well in the waiting room as I had a funny turn and ended up having to rest my head against the wall of the waiting room as I couldn’t put my head between my legs without drawing attention to myself. I know its stupid but I dont want to cause a fuss. I leaned myself up against the wall (whilst sitting) and closed my eyes waiting for the room to stop spinning. I also felt like I was going to vomit so I focused on my breathing. When my gp called my name he took one look at me and asked me if I wanted him to go and get the wheelchair. Again not wanting to cause a fuss I said no and just told him to wait for me to get up. He was insistent that I was very, very slow on getting to my feet and he never went further than catching distance in front of me.


The usual pleasantries were exchanged and then he started going through my latest blood test results. The good news is I am not diabetic which had been a fear of my gp’s due to the pretty much constant bouts of cellulitis I have suffered. My kidneys and liver are working well. He then told me my B12 results were 178. As I was in the process of recovering from a turn, it took a few seconds for that to sink in. You see I have been telling any doctor that will listen since January that my B12 levels were low. Everytime my B12 levels drop I get pins and needles in my hands, I lose sensation in my hands and have problems telling hot from cold and dry from wet. 


As I am pretty hot on the problems B12 deficiency can cause and pernicious anemia seems to run on my paternal side, I knew 178 was not a good number. However doctor training on B12 is pretty poor in most countries around the world. Doctors will accept that not enough vitamin D and you will get rickets, not enough vitamin C and you will get scurvy but they will not accept that low levels of vitamin B12 will wreak havoc on your entire body. For more info please use this link b12d.org , which is a great website for information regarding both conditions.


Had I been well enough to stand and fight my corner yesterday, as it appears my gp is unfortunately not fully aware of the implications of a B12 deficiency, I would of. I did however in my muddled state manage to tell him I had neurological symptoms. He didn’t agree and said that it was due to my poor circulation. After a small discussion, he suggested that he would give me an injection of B12 as an experiment to see what it did. I knew that one B12 shot would make very little difference and I actually needed an injection of B12 every other day until there is no further improvement for patients with neurological involvement eg me and then injections every 2-3 months (NICE guidelines). So as I am providing this blog posts with these links I am simultaneously printing off the information for my gp. 


Please remember a gp is like the jack of all trades, he or she is supposed to know a little about everything and they are only human. Sometimes things will pass them by. Hence why I am not cross with my gp nor disappointed, I will provide him with the information to update him. Should he choose not to use it or to actually give me the correct loading dose of B12 then I will be extremely angry.


I have been shocked by my response to the B12 injection, thinking it could be days or months before I would see any results. The first thing I have noticed this morning is that there has been a massive reduction in the nerve pain in my leg. Its the most comfortable its been since before April 2014. I also woke up this morning feeling refreshed its been years since that happened. For me its too early to say it was the B12 that did it but I am curious to see what tomorrow brings! My gp asked me to ring him if I had any improvements in a few days.


My main reason for my visit was my back however there was the little issue of my syringes to discuss. I dont think that I have mentioned that ever since I have been placed on the drug octreotide, there has not been an issue obtaining the drug but a major issue obtaining the method of delivery. The hospital gave me an ample supply of needles and syringes when I was discharged but by May that supply was running out. This is where the problems started.


The community pharmacy list does not allow for syringes of this size to be issued, its not contained within their list. So unless I was prepared to pay for them my gp was not going to be able to issue them. This lead to many phone calls to the prescribing team and the hospital to try and get this issue resolved. 

 

All that happened was that it turned into a massive blame game the hospital blaming the gp surgery and vice versa. That left me playing piggy in the middle and I was still without the needles and syringes to be able to use the octreotide. In the end I got an emergency supply of both the needles and syringes from my doctors surgery on several occasions. Eventually needles were prescribed, 400 of them (200 for drawing up and 200 for injecting) but no syringes were forthcoming. That was fine whilst I wasn’t injecting due to the cellulitis but as I started using the octreotide again last week I was going to be out of syringes by today (Monday 4th August).


When I told my gp that the syringe situation had still not been sorted I thought he was going to combust! He had no idea there was still a problem but he sorted it immediately. As the hospital would not issue me a prescription for the syringes so I could acquire them from the hospital pharmacy my gp took matters into his own hands and gave me a box of syringes from the practice. The practice can order them for their use but they can not be ordered for patients. A completely ridiculous and kafkaesque situation but there you have it. Now in 3 months all I have to do is ring up and ask for a box of syringes! Why its taken from April to July to sort out is beyond me.

 

* * *

 

I started writing this post on Thursday 31st July, I felt like a different person from just one B12 shot. I felt so good I rang my doctors surgery to tell him of the improvement. Later on that evening he rang me to say he now wanted to start me on B12 injections every other day for a week or so. Not exactly the NICE guidelines but it was a start.

 

That evening on the advice of a good friend in the USA who has suffered permanent damage to her nervous system due to B12 Deficiency I ordered some B12 lozenges from a well known internet site. They would be delivered the following day. 

 

On Friday I woke up and felt dreadful, I had slept better but I felt like death. The pain in my leg was back and worse than ever. I felt so deflated, had my reaction to the B12 injection just been a fluke? I know what I am telling you is just anecdotal evidence however I am not advertising anything, I am not being paid by anyone, I am not even telling you the brand of B12 or the site I obtained it from. I can only tell you my experience.

 

Once my B12 arrived on Friday I took the dose my American friend had suggested as a loading dose. Too much B12 is not harmful and my B12 is low, my stores are depleted. I noticed no difference Friday even after taking the dose, all I felt was washed out, tired and disappointed.

 

Today Saturday morning after two doses of the lozenges my leg pain has gone. When I say my leg pain is gone I mean the horrible screaming unrelenting nerve pain I have had for months and does not respond to medication. I still have an ache / throb in my thigh and down my leg but its like the volume has been muted. I slept deeply last night, I felt like I had actually slept. I haven’t had that feeling for 7 years. The only thing that is different in my life is enormous doses of B12 and the fact I have just started watching Scandal. I dont think its Scandal, as good as it is, that has reduced my leg pain.

 

I am still exhausted and feel like I could sleep for months but then I have been suffering with sleep deprivation for years. The damage done to my system because of the low B12 will take months to repair. My gp has already confirmed this. He has also warned me some of the damage may be permanent. However he has told me that I will be having B12 injections every 2-3 months for the rest of my life after this loading dose.

 

I hope that my response to the single B12 injection has changed my doctors mind. He believed that there would be no neurological symptoms at a level of 178. Despite the BMJ Best Practice recommendations, The British Society of Haematologists report, the NICE guidelines and the fact my B12 results had come back from the lab in a red box. He gave me the B12 shot as an experiment. Look at the results! 

 

I hope that my reaction to a B12 injection has changed his mind.

 

I would like to point out the B12 lozenges will not replace the B12 injections that I am having on alternate days. I am using the lozenges to get rid of the pain in my left leg as because the surgery doesn’t open at the weekends I have to wait from the Friday to the Monday to receive my injection. If your doctor says you need B12 injections do not think you can use B12 lozenges to replace them.

 

If you suspect you are suffering from a B12 deficiency this will advise you on the next step