Tag: pain

Posted in Archive, March 2015

The Beast Rears It’s Head…

Posted on by dystoniaandme

…and I don’t mean Beauty and the Beast style. This Beast of mine, is not going to transform into my Disney fairytale prince charming. Sitting in the Drs office earlier this afternoon, the Dr uttered words I had hoped I would never hear again. Complex Regional Pain Syndrome. The newest diagnosis to my add to my growing list, but not new to me. I have battled and conquered this hideous beast before. It took months and months in hospital. I never thought I would have to deal with this condition again. Last time it was in my leg. Now it is in my shoulder.

Emotionally I am numb, exhausted I know from the little sleep I have got due to pain. Part of me wants to draw the curtains, grab a pillow and just cry. But what good would that do me? It wouldn’t fix me, it wouldn’t take the physical pain away. I made the mistake last time round of avoiding everything that inflicted more pain, such as trousers (I lived in shorts), I couldn’t bear bed sheets, etc, anything touching me was agony. By avoiding touch I made the condition worse. I’m forcing myself to lie down on my back, to wear clothes that hurt, to put my handbag on shoulder even if only for a moment. By doing these things repeatedly hopefully my brain will relearn, again, that all is well.

The Dr went through my meds and was a bit stumped, as medication that he would have put me on to try to treat the condition, such as Gabapentin, I  am already on the maximum dose of. We therefore agreed to trial Sertraline on the lowest dose. It may or may not work, but I’ll try anything right now.

In the meantime I’m going to close my eyes, and breath. Things could be worse after all. I defeated this beast once before, and I’ll defeat it once more.

 

 

 

 

Posted in Archive, March 2015

Word Search

Posted on by dystoniaandme

I’m the sort of person that words come easily to, whether that’s verbally or written. I may pause to search for a word once in a while if my brain fog is bad, but normally I’ll pluck another out to replace it. It’s an unusual scenario when I feel so completely stumped and unable to find one to suit my needs. Yet for the past week that’s exactly how I have felt. I’ve tested every word I can think of, yet none quite fit. Which makes trying to describe the situation I’m in now difficult.

When I saw my neurologist last Wednesday, he decided to add Botox injections to my shoulder to see if this would help control my twitches. This has helped beyond my wildest imagination. At first the pain that followed I put down to my body reacting to the injections, after all I do experience similar pain in my neck each time I get my injections. However unlike my neck, the pain has not improved, even lying down at night is painful. Consequently sleep is almost non-existent . Carrying things, anything touching my shoulder is extremely uncomfortable. I don’t feel like pain is the right descriptive word however, though it most definitively applys the majority of the time, I don’t know how to verbalize the sensation that I am experiencing. It is so uncomfortable and is setting my teeth on edge as it is constant. Hopefully it will ease off soon.

On a more positive note I have attached below the photo below that I promised of me standing.

Posted in Archive, March 2015

Positive Neurology Appointment

Posted on by dystoniaandme

Today I had my six weekly appointment with my Neurologist in London. As usual he was charming himself. He never fails to listen, which is a breath of fresh air after the experience I often receive at the hands of various other medical professionals. As many of you will know, recently my twitches have been worsening. This has been impacting on my day-to-day life. Some days I struggle just to dress myself and I worry about whether I will hit someone in the street or knock products over in a shop. These factors don’t stop me from going about my life, but they do prove to be rather big hurdles though, as I really would rather not apologise for twitching and hitting someone.

I explained this to my neurologist. Honestly I was expecting, at best, for him to up one of my many medications or add yet another one in to the cocktail. He surprised me however by offering to inject my shoulder to see if this helped bring me some relief. This was a treatment I had debated asking for, but I had wanted to listen to his suggestions first. After all, he’s kept my twitches fairly well controlled for the past two years. He injected my shoulder muscles three times, which in the moment didn’t bother me too much, but I am really feeling it now! I am keeping my fingers crossed that hopefully this will do the trick.

As usual he advised me not to over do it. I can’t help but laugh. I try to take this on board, I really do. Dystonia already holds me back so much though, I don’t plan on taking the easy option. Even if that would mean less pain. I would rather grasp every opportunity that life throw at me and live every second to the full.

Posted in Archive, February 2015

Out of Control

Posted on by dystoniaandme

I’m not sure where to begin. There is so much pain and if I am quite honest it is making everything extremely cloudy. After months and months of being seizure free I think today I had one, the memory loss that I seem to be experiencing confirms it. The devastation this causes is hard to put into words. I’m scared to leave the safety of my bed in case I have another, as one fall will be all it takes to pretty much guarantee an ambulance trip to the local hospital. After spending the last two days there (one planned trip, one unplanned), I don’t particularly fancy going back again so soon.

One of my Dystonia symptoms is a strong twitch/jerk, in my left arm. It flings my arm out rather violently to the side, it is completely out of my out of my control. This has been controlled by 3600mg of Gabapentin for the last two years but this no longer seems to be enough. It started off with just my shoulders jerking, I should have gone to the Drs then but instead I ignored this symptom. It’s got to the point now where my arm is flinging itself out to the side every few minutes with such a force that it causes horrendous pain when it collides with something, which it often does. I have had to resort to wearing a splint on my wrist to protect it as it had become rather swollen from the several times it has hit door frames, walls, hospital beds, etc.

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My GP has decided to up the amount of Topiramate I take, which is an old antiepileptic medication to see if that will help. I take Topiramate to control my migraines but as my GP pointed out old antiepileptic medications such as Topiramate and Gabapentin often have many uses. So fingers crossed it works as I’m really struggling to cope. In all simple truth I just want someone to hug me but as I told my mother earlier I’m to scared to let her do so incase I hurt her.

I’m scared of my arm, the pain its causing and how my body irrationally responds to pain. This situation is impacting my life already – I daren’t walk into a shop now I’d break their stock – and I refuse for my life to be put on hold yet again! I really hope my little Dystonia Alien can hear me. I hope he is trembling in his tiny boots. As eventually my fear will give into rage, and I sincerely hope that the Alien has the sense to uproot and leave than do battle with me yet again.

Posted in Archive, January 2015

Spasms Four Weeks Early

Posted on by dystoniaandme

For just over two years now I have had regular Botox injections to help control my Dystonia. It started off being every twelve weeks but we soon established that I need it more often than that. By the five to six-week post injection mark the spasms would be back. If I was lucky they would be minor spasms, if I was unlucky I would experience jaw tremors that were slowly loosening my teeth and extreme spasms that would dislocate my jaw. Thankfully my wonderful neurologist was willing to bend the rules a bit and has since been administering the injections every six weeks, which has worked well.

However as I am sat here typing this I am debating taking another Tramadol to help me deal with the pain of my jaw spasm. Normally when I reach this point I have a week at the most to go before my next injection is due. The knowledge that the pain will soon be but a distant memory is comforting. Today things are different. Its been only three weeks since my last round of my injections, and because I wanted to see if I would be able to last longer in-between injections my neurologist agreed on doing them at week 7. That’s another 4 weeks. I have spent the day wondering what’s changed. I know that becoming resistant to the Botox is a risk due to how often I have it, however my neurologist assured me that as I cope on a lower dosage that this risk was minimal. Now I know there is always going to be somebody  who has a side effect no matter how small the risk, but if this was the case I would expect my neck or my blinking to be starting to spasm too, as I also have these areas injected as well.

I briefly entertained the idea that perhaps he hit the wrong muscle this time after all no Doctor, no matter how good is perfect. I struggle to believe this though. If I cast my mind back over the last few months I am aware that I have spasmed earlier than usual on several occasions, admittedly however never this early. A glance at my symptom diary confirms this. A part of me wonders if perhaps I just need the dose upping in my jaw. I have much  higher doses to my neck, but still with enough room to allow more to be injected to the jaw muscles.

I have taken a Procyclidine tablet in the hope that this will take the edge of the spasm. Between Procyclidine, Volterol, Tramadol and if needs be Diazepam I am hoping to be able to control the spasms and pain levels. The idea of spending the next four weeks like this puts fear in me. I cope better with the majority of the rest of my symptoms, Jaw spasms I struggle with. Everything from a sip of water or eating soup, to talking can aggravate it when its bad. Diazepam is always my last resort. Even on a small dose I struggle to stay awake.

When discussing my worries with my mother earlier she pointed out that perhaps this is just a blip. Blips have occurred before, though normally this is because I have caught a cold or some other bug causing my body to go into meltdown mode. Right now I would welcome a bug, anything to explain the spasm and take away the anxiety of another four weeks of pain.

I am reluctant to give in to the pain and medicate myself anymore right now, as I know this could be just the tip of the iceberg and if it is I want to feel like the medicine has made a definitive difference. If I give in early and take them every four to six hours then when I reach the bad stage it won’t feel like they are making a lot of difference. In the meantime my medicine of choice shall be curling up and watching Jack Whitehall and Russell Howard. Nothing like some comedy to lift the spirits!

 

Posted in Archive, November 2014

Looking Forward

Posted on by dystoniaandme

At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.

As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.

I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.

Posted in Archive, November 2014

Let’s Talk About Meds!

Posted on by dystoniaandme

I recently got approached by an American company asking me if I would be willing to blog about my medicine. I was very willing to do so and this is something I am very open about. Medicine is great, it can cure illnesses, take away pain and help us manage our conditions. Now obviously this depends on the type of illness and type of medication prescribed by your doctor. For me, some of my medicine will eventually cure me of Lyme Disease, other medicine helps me to manage my Dystonia and a handful of pills keeps my pain levels under control.

One of the key things about medication is drug interactions. Most Doctors will check before prescribing you a new medication that it does not interact with another, however some forgot to do this. I have experienced this once before when a muscle relaxant I was prescribed to help with extreme muscle spasms interacted badly with a pain-killer I was taking regularly. I was lucky that the reaction only caused me to sleep constantly. It could be quite humorous at some points when I would fall asleep in the middle of talking! I was like this for about two weeks as we had to slowly ween me off the medication. However joking aside medication interactions can be very serious and it is always important to check with your Dr first, or check the pamphlet that came with your meds.

When I was first put on my meds I naïvely figured it would ‘fix me’ or at least enable me to have a good quality of life. What I did not factor in at that time was medication side effects. I knew they existed I just never thought I would experience them. Clonzepam was the first medication I reacted to badly. I don’t remember much of what happened, but I turned completely psychotic. I was determined to find scissors so I cut all my hair off. Mum ended up having to stay home from work to look after to me as I was a danger to myself, I am thankful that I was bed bound. Diazepam was the second medication I reacted to. My local hospital had prescribed me it after my spasms severely damaged my leg earlier on this year. I was fine for the first day or so, then I turned psychotic again. This time I was convinced that amputating my spasming leg would cure me of all my illnesses. I was desperate to contact my neurologist to set up a date for the amputation and devastated that nobody could understand my logic! Months on from it and I am glad that nobody thought Hey, why don’t we give it a go!

At the moment for my Chronic Neurological Lyme Disease treatment I take a mixture of medication and supplements which works out as 47 pills a day and 1 injection twice a week. For my Dystonia I take 6 pills a day and have 6 Botox injections every 6 weeks. I take 2 tablets for migraines every day and 2 syringes of allergy medication every morning. It works out that I take 57 tablets/syringes a day, then throw in some injections every now and then, and that is not even factoring in days when I need pain medication and muscle relaxants. It is a lot to remember to take! However it is vital that I take these at the right time, such as if I decided to take my evening dose at the same time as my dinner time dose I would be feeling sick very quickly as they cannot be taken with food! As many of you know from my earlier posts one of my symptoms is brain fog so I rely on reminders in my phone to help me remember to take my medication.

Medication is an amazing thing but you need to know what you are taking and why. I am the type of person who likes to take as little medication as possible, however I recognize the fact the Lyme Disease made me seriously ill and if I want to get better I have to take them. I understand that I have to live with Dystonia for life so I will always be having a neurotoxin injected and I am ok with that.

Medications have a dire effect on the body if not taken safely. So please be sensible and talk to your Dr about meds!

Posted in Archive, September 2014

Excitement and Nervousness

Posted on by dystoniaandme

Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

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Posted in Archive, September 2014

Glimmer of light at the end of the tunnel.

Posted on by dystoniaandme

I finally feel like there is a light at the end of what felt like a never-ending tunnel. Last week I attended an appointment at a local private hospital to see whether they would treat me for Chronic Neurological Lyme Disease. Whilst they have said no to giving me IV treatment they have offered me an oral antibiotic pulse protocol which they think will cure me of Lyme. They say it has cured others similar to me before, so I have high hopes.

Now that they have said they will treat me I feel like my stress levels have plummeted, though I must admit they did soar back up when I saw the price for treatment. I have no idea how I am going to afford it, but at the end of the you cannot put a price on health! Being free of some of my symptoms and having to battle with my body less seems like something out of a fairy tale to me, yet now it is just at my fingertips! Having less pain, less to contend with would be bliss.

I have been lucky that my Botox has worked rather well since I last saw my neurologist. So I have not had to cope with my Dystonia stressing me out at the same time. Today is the first time I have woken up and thought ooh actually my jaw and neck don’t actually feel quite right. Not that I am complaining, with only two weeks to go until my next lot of injections for it to only start twinging now is fine by me as the muscle are not distorting yet.

For those of you who are unaware there are currently two Dystonia online petitions going around. One is US-based the other UK. However it does not matter where in the world you are you can sign either one or both, and I urge you to as it will help make a much-needed difference by boosting awareness of the condition!

1) https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

2) http://www.change.org/p/uk-government-raise-awareness-about-dystonia-an-illness-which-cannot-be-cured-and-97-of-doctors-dont-know-about-it-properly?recruiter=45857151&utm_campaign=twitter_link_action_box&utm_medium=twitter&utm_source=share_petition

Posted in Archive, August 2014

Emotional Turmoil

Posted on by dystoniaandme

Currently I feel like I am a whirlwind of emotions – confusion, terror, anger, helplessness – are to name a few. From the 1st of September almost daily I will get another test result back from the private hospital, and then on the 10th I shall attend to see if they have decided to treat me or not. If they do agree then I cannot even begin to describe the relief I would feel at finally getting the correct treatment. But it would be very bittersweet relief as I would have to somehow fund this treatment.

Yet the panic I am already feeling about finances is nothing in comparison to the terror I feel about having to deal with the spasms caused by my Lyme Disease on top of my Dystonia again. I know that I have dealt with it all before so I CAN cope again, but I don’t want to. The thought of it sends me running for the hills. When my hands spasmed before I frequently used to tell my mum that I felt like I had pulled my fingers out of joint, I’ve recently been diagnosed with Ehlers Danlos type 3, which makes it highly likely that I was subluxing in my fingers. To be frank I am scared of the extra amount of pain that untreated Lyme Disease will bring. At the moment with oral treatment it is dulled down, manageable. Which has enabled me to learn to cope with Dystonia and the pain that it causes. I don’t want to go back to being rushed by ambulance in to hospital every month. 

I have enough oral antibiotics to get me through to the middle of September at the moment. From our recent experience of coming off the antibiotics and the deterioration that that caused I am loath to go through it again. Its quite selfish really as I know a lot of my fear stems for not wanting to lose my hands again. I love being able to do simple activities such as brushing my own hair. It is a sign of independance and I get such satisfaction from being able to do tasks such as this.

The majority of my Dystonia is well controlled with Botox, and Benedict is not inflicting too much pain at the moment. I just want to maintain/improve my condition. In the meantime I shall keep my fingers crossed that the private hospital wants to treat me, and wish to the NHS fairy that they open their eyes and acknowledge chronic Lyme, and start treating us sufferers properly!!