Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘pain’

Isolation Week 2

Although I only received my instructions to isolate myself for the next 12 weeks from the government on Monday, we had infact already been in isolation for a week as both myself and my partner Damon bad been symptomatic. Whilst I’m pretty much symptom free now, Dame is still locked away upstairs as he remains unwell. Whilst he would only be considered a mild case, it’s worrying none the less.

We decided early on that we would follow all instructions to the letter as we know how risky a simple cold to me can be. The symptoms I had last week had me reaching for my inhalers constantly. What hit home in particular for me was our two year old son is also on the shielding list due to his medical issues. Luckiky, as much as he desperately wants to go to the park, he’s quiet happy accepting, that there’s a nasty bug outside, so for now he can’t.

It’s hard however to follow the governments instructions when my partners in isolation. For example I’m not really supposed to be particularly near our children and supposed to be three steps away from everyone. Well with Damon isolated I’m the sole parent, and they are now both sleeping in our room. There’s no alternative. But we’ve got to make the best out of a bad situation.

I’m starting to experience more spasms and pain as my Botox wears off. My next lot is supposedly in London at the end of next Month which I’m expecting to be canacled. I’m hoping an alternative can be arranged at a local hospital in the meantime.

I would love to hear how everyone’s isolation is going. So please in the comments on my Facebook page do let me know. I’m aiming to keep this isolation diary updated daily either with blogs here or VLOGS on the Dystonia and Me page.

Stay inside. Stay Safe. Support our NHS.

Full Body Dysfunction

I had really debated whether or not I would post this blog. As you will know over the last 7 years I have strived to share the ups and downs of my journey with you all in a brutally honest fashion. However what I am experiencing right now is something I am finding to be increadibly difficult to deal with and awfully humiliating at times. However as I have found in the past that ripping the metaphorical band aid off and sharing bluntly with you all to be rather helpful I figured I may as well start at the beginning.

I shall try to keep it brief. About three weeks ago after several days struggling with a dislocated jaw and severe spasms to the point I couldnt eat or drink  I collapsed in the kitchen. The resulting head injury leading to an ambulance needing to be phoned. Several seizures later I was whisked off to resus. I dont remember much of the first four or so days in the hospital. Luckily despite being severly ill I had the sense to keep notes of my concerns, for example being denied antisickness and painkillers following several hours of vomitting and seizures.

For some unknown reason that was never communicated to me all of my medications were stopped the whole time I was in the hospital which led to uncontrolled seizures, spasms and pain. My kidneys were found to be damaged, there are changes to my spine and in my brain matter, I have been diagnosed with epilepsy. Twice whilst I was in there I had an NG tube placed and failed. Unfortunately the second time round it took the drs 6 hours to view the xray showing it misplaced. In this time I was quite distressed due to the fact I was violently vomitting blood due to a tear from the ng in the lower eosphaoghes for the better part of the 6 hours all with a dislocated jaw. A rather agonizing experience.

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Throughout my 6 days in hospital I was on IV fluids 24 7 due to the fact I currently am having extreme difficulty swallowing and can go days at a time unable to do so. At the point of discharge I had managed a few sips in a 3 hour period and was discharged with no plan of action. Its been a hurrondous time since then with me only getting worse. However I am now also completely bowl incontinent which has left me terrified to leave the house. But being the mum of a 2year old means fear cant win.

Hopefully I’ll have a more optimistic update soon.

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The trauma of Anesthetic Free Surgery

At the start of January, I underwent a small surgery.  I’d known for several weeks that I had needed it but due to being pregnant my surgeon wanted to wait until I was safely into the second trimester before we risked putting my body through the stress of it. I am by no means a stranger to surgery; due to my varying conditions I’ve had more surgeries than I care to think about. Whilst I was naturally nervous with all of them, this one was by far the worst. With my previous surgeries, it had always been carried out under a general anesthetic, this time, however, as much as I would have far preferred to be knocked out, I was wide awake and able to feel everything.

My surgeon had made it clear to me from the start that if he could have put me to sleep he would have done, but as it was a quick surgery he didn’t want to do so due to the pregnancy. A decision that I fully agreed with. The complication we faced was that I experience no response to the local anesthetic. It doesn’t matter the type or amount you inject me with, it does nothing. This is down to my Classical Ehlers-Danlos Syndrome. My surgical team and I have a very good relationship, and we talked at length about the possible sedative medications we could use to help me through the procedure; ultimately it transpired that the few medications that were appropriate to use I am severely allergic too. With no other options, I consented to undergo the surgery with no anesthesia or pain relief.

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Clambering onto the operating table, staring up at the bright lights above and conversing with the operating surgeon went against everything that felt natural to me. My surgeon cracked joke after joke, trying to keep me focused on anything but the pain that his scalpel inflicted. Having to force yourself to lie steady, and not scream for help whilst someone is cutting into you, to try not to curl up in a ball and cry hysterically is hell. If I hadn’t needed the operation I would not have put myself through it.

I had wrongly presumed that because I can handle dislocations like a pro that this surgery would not be that much harder. Instead, I find myself waking up at night in a cold sweat, gripping my duvet, absolutely consumed with fear. Night after night I go to sleep and dream I am back on the operating table except for this time the pain never stops, the surgeon just keeps cutting bits of me away until there is nothing left.

I am fairly certain that the nightmares are getting worse due to the possibility of needing a c-section in the not so distant future due to a low-lying placenta. Whilst I know if this is the case my team will put me under for the operation, the irrational part of me has still built up a fear of once again being on the table able to feel everything. A position I hope never to be in again.

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How Many Dislocations Is Too Many?

It has been a little over two weeks since my trip to the hospital where I was subsequently put on a strict liquid-only diet whilst I wait for a referral to see the oral surgeons. The liquid diet has to a degree reduced the overall number of dislocations I’m experiencing on a daily basis which is positive, however, my jaw dislocations are still very frequent. Days such as today I find quite frustrating, I don’t know how best to help myself.

The Dr. I saw who did not believe in Dystonia or have any understanding of EDS was extremely disapproving of the fact that my local hospital had given me a small dose of morphine after the third attempt to relocate my jaw failed. I’d spent over 24 hours dislocated and only had paracetamol throughout, I had not once asked for painkillers until this point. His attitude had left me worried about how to manage my pain at home. I am on my 12th jaw dislocation today. I have broken down in pain multiple times, yet all I have taken to manage it is ibuprofen and paracetamol, alongside applying lavender wheat bags to ease the surrounding muscle spasms that are aggravating it. Normally I would have taken something stronger such as Codeine or Tramadol by now,  which is a treatment plan agreed by both my GP and Neurologist, however I am so aware if on the off chance I have to return to the hospital for help with relocation I will need to inform them of what medications I have taken. I am fed of misinformed and ignorant professionals treating me like a drug seeker. I should not have to deprive myself of the painkillers I need because of one arrogant man.

I feel extremely frustrated. I know that referrals such as these take their time; however, I am concerned that this will just be the start of a very long process. Whatever ‘fix’ they come up with for my jaw, will have to take into account my Dystonia, and that seems like an impossible ask.

26 hours Dislocated

Late Tuesday afternoon whilst curled up on the sofa nattering away to my partner my jaw dislocated. It wasn’t a surprise. It had felt off all day, with pain radiating around the area, and visibly subluxing often so I had stuck to soft foods all day. Being me though I hadn’t considered that talking a bit less might help. I rather excel at talking. It’s quite unusual for me to not to be able to relocate my own jaw but I decided that I’d try and sleep on it and if it was still bad in the morning I’d get checked over. I can almost hear you shaking your head at me, in hindsight I agree that was a silly decision.

So yesterday morning I took myself off to the Walk-In centre where after a quick (and right) lecture on dislocated jaws being an emergency I was whisked off to my local hospital. It was my first time visiting the A&E up here since I’ve moved and I was a tad nervous. But the staff were wonderful. They were rushed off their feet, but they were so kind, it was a breath of fresh air in comparison to what I am used to.

X-rays confirmed that the right side of my jaw was fully dislocated. After using a rather unbelievable amount of tongue depressors failed to relocate it, it was decided to take me round to the resus unit where I could be sedated and they could try and manually relocate it for me. They were so full of confidence, to the point I too was full of confidence, I happily offered them my arm whilst they pushed the sedative through, I can remember giggling as it kicked in…and then I can just remember the pressure as they tried to manipulate it. Two different doctors tried three times. I screamed. My jaw failed to relocate. They were lovely though. At this point the decision was made to phone for an ambulance to take me to a different hospital to see the specialists there.

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Sedated post failed relocation attempt

When the consultant walked through the door I could have broken down; and to be fair I did about five minutes later. I’d seen him previously about 7 years ago and the visit burns in the back of my  mind as a prime example as exactly what a doctor shouldn’t be. Upon entering the room this Dr recognised me instantly. He doesn’t believe in Dystonia. He ignored the fact I have EDS and suffer with frequent jaw dislocations. Whilst I am thankful he relocated my jaw, I cannot express how belittled, put down and worthless he made me feel. Upon leaving the hospital he advised that I start on a liquid diet but gave no further advice on time frame or inteventions in the meantime.

Out of frustration with feeling like I just didn’t know what to do to help myself this morning I went to see my GP, I am lucky to have a wonderful one up here. He was quiet astonished that I had been discharged from the hospital last night as you can see my jaw subluxing still and with my history its only a matter of hours/days until it fully dislocates again. So I’ve been referred to the oral surgeon and on strict orders to maintain a liquid diet until then. Dystonia and EDS are two conditions that really work against each other so here’s hoping there’s a not too drastic treatment plan in the future.

6 Years Neurologically Challenged

Last Tuesday marked the 6 year anniversary since Dystonia made a joint shattering (literally) entrance into my life. Previously I’ve marked this day by reflecting on where my life is in comparison to where I had planned it to be; not a great way to spend it and usually resulted in a lot of tears. This year was remarkably different, for the first time in six years I didn’t spend the day in tears and focused on how truly blessed I am.

The reality of my conditions means that as I age my body gets deteriorates a lot faster than a healthy person would. I already need a double knee replacement but have agreed with the surgeons to delay this until my son is in school full time. I’m told its inevitable that I will end up reliant on power chair in the future. The time frame for this is unknown, so I’m focusing on doing what I can to strengthen my body against the battering it takes from the too frequent dislocations and spasms. I’m starting by shifting the weight, it’s slow progress but I am making progress. I’ve found some local HIIT classes for mums and babies that are happy for me to do what I can whilst my son plays beside me. A month ago I signed up to the body coaches 90 day plan, which unfortunately I’m only just starting as I dislocated both my knee and shoulder and needed to let my body recover. His workouts are harder than my body can cope with right now but I’m adapting them and feeling great.

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6 years ago if you had told me that I would be OK with living with a mile long list of debilitating conditions I would most likely have bit your ear off. Now I can see how my experiences are shaping me, I’ve learnt to grasp every opportunity with open hands and jump feet first. Whilst the idea of a further 6 years living in this pain is not one that I can even start to wrap my head around. I know that I have the strength to battle it and succeed.

CRPS & Dystonia

I first heard the words Complex Regional Pain Syndrome and Fixed Dystonia back in 2009; I had just been admitted to hospital with unbearable pain, colour changes, temperature fluctuations and a hypersensitivity to touch in my right leg. I would spend the following six months confined to a hospital bed learning to retrain the damaged nerves. It was a hell I would not wish on anyone. I am one of the lucky few, whilst I never achieved full remission, the pain eventually reduced to a tolerable level which only flares up if I lie down on that side of my leg for too long or bash it. Unfortunately I was rediagnosed with CRPS in summer 2015, this time it had manifested in my left shoulder blade and arm. Once again it had been caused by repeated injections to the same site which resulted in damage to the nerves.

CRPS has been a condition I have fought for many years, generally I have a good handle over it. I know what to avoid and how to help myself as much as possible. Yet every now and then I have days and nights like the last 24 hours. It is hard to describe the agony in which I have spent it in. The night before last I simply bumped my thigh whilst getting out of bed. The pain at the time seemed excessive for such a little bump, but I presumed if I lay down and rested for a few minutes it would die down to its usual level of simple discomfort. Instead with each minute that went by the pain intensified as did the spasms.

I made the decision yesterday not to leave the house, I knew I would be fully reliant on my wheelchair and that even the lightest breeze would reduce me to tears. Instead I kept myself fully medicated on Tramadol which dulled the pain slightly but nowhere enough. I needed both my walking sticks to hobble the few steps to the toilet. Each accidental brush from the cat as it went past left me biting back screams and in yet another wave of tears.

The spasms and pain kept me up for the majority of the night. I managed just over three hours sleep in the end.  The spasms twisted my leg into positions that resulted in multiple subluxations, and my nerves flaring meant that I could not bare the touch of clothing, the mattress beneath me, or a duvet. It’s hard to explain to someone this type of pain, at the point of time I would have jumped at the opportunity to have the nerves severed. To be honest, even right now at this time of writing when the pain is slightly reduced but still horrific I would beg for it to be done. Let me put in perspective for you,  full blown labour is easier to deal with.

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Whilst the pain is improved today I am still struggling. I feel as if someone has sliced my leg open multiple times from my thigh down to my soles and has rubbed vinegar into the wounds. The constant spasm in my thigh has left me exhausted and desperate for a relief that seems as if it will never appear.

I know that in a few days time in all likelihood I will be back down to my usual levels of pain and spasms, but there is a niggling fear at the back of my mind that it won’t reduce further. That fear is more terrifying to me than anything.

New Beginnings

At the start of May my degree came to its close. After three years living in Oxfordshire it was time to start making new plans for the future; which is why on the 11th of May we packed up and moved to St. Helens, Merseyside. It’s a long way from my family which is hard but we are surrounded by my in-laws who I love dearly.

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Happy in our new home

Getting to know a new area and work out the most disability friendly routes to places is tiring but so far I am feeling very settled and happy in my new environment. I’m now several hours away from my neurologist which is less than ideal but he has agreed that I can remain on his treatment lists. Whilst moving to a new neuro more local would be easier I don’t feel comfortable leaving his care as he has been my rock for the last six years.

I’m having a couple issues with my jaw spasms and the osteoarthritis at the minute but overall I’m coping well. I’ve introduced a new herbal supplement to see if it helps with pain relief and will be reviewing this soon.

Wonky But Happy

“Hmmm that’ a nasty dislocation to have long term, take some morphine.”

“When you next see your neurologist, if I were you I would discuss having your botox more regularly. This degree of deviation, pain and dislocation on a regular basis is not good for you.”

“Wow. Ehlers-Danlos, and Dystonia. You couldn’t have asked for a worse combination of conditions there.”

“Are you sure you don’t want to go the hospital? I’m sure the A&E department will listen to you this time. I’ll even write you a note.”

These four word-for-word quotes from different health professionals give you an insight into the last week and a half of my life. My botox has worn off a couple of weeks ahead of schedule around my jaw, the rest is still working well, so overall I’m pretty happy. However this does mean I’ve been experiencing regular extreme spasms and dislocations in my jaw again, which in turn has an impact on my ability to talk, eat and drink.

Whilst my ability to communicate using British Sign Language is steadily improving, I took a trip to the doctors to get a prescription for some painkillers and muscle relaxants, as I’d like to eat, drink and talk in as little pain as possible. Whilst I have access to oramorph this is my last resort medication, and not something I am willing to take around my son unless it is an emergency. The doctor couldn’t quite believe the predicament I was in, let alone get his head around the fact that I did not fancy sitting for a couple of hours in my local A&E at a hospital that has repeatedly provided the wrong treatment despite direct instruction from my neurologist. I stated to him that as I don’t respond to local anaesthetic I would much rather take the painkillers and muscle relaxants at home and relocate my jaw myself when the spasm eased off. At this point I think he would have dragged me to the hospital if he could have.

We discussed at length (well I scribbled out for him what I was attempting to convey) my botox arrangement with my neurologist. It stunned him that I was willing to put up with these spasms for a further two and a half weeks. The moment was an odd one, with me not really in a great place with my distorted face, twisted neck and dislocated jaw to protest that actually I was doing great, but then he didn’t know me six years ago when I was bed bound, he didn’t even know me a week beforehand when my botox was working well, so I can see where his concern comes from.

At the time the above four quotes drove me nutty. But I know I’m easily wound up when in pain, so I can’t say that I am surprised. In reflection, whilst my jaw still is causing me significant pain from my current dislocation I can see my progress in pain management and self-care; which is an element I am proud to have improved on.

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Body Meet Osteoarthritis

This week I found myself sitting in the preop clinic of a knee replacement clinic. On my arrival it didn’t take long to piece together where I was, and even less time to start panicking as to why I was there considering I was expecting to see the Orthotic department not the surgical team.

The Dr I’d been assigned was lovely and surprisingly familiar with the majority of my conditions. I was pleasantly taken aback to discover that they had scheduled all the xrays and scans into the appointment time slot, so I was carted off down to X Ray where my knees, hips and ankles were x-rayed from multiple angles (so far I’ve just had the results for my knees). Having these pictures taken took quite awhile as trying to get my knees and and toes all pointing in the right direction is a rather impossible task. I got the impression the radiographers were not used to my host of conditions as my uncompromising feet proved quite the problem, and by manipulating them into a forewards position my knees subluxed!

So far the x-rays have revealed that I have Osteoarthritis in my knees and that really I need new knees, however due to my EDS that surgery is extremely unlikely to provide any long term relief so my surgeon wants to delay it for as long as possible. So for now the plan is to try to shift as much weight as I can to ease the pressure on my joints and delay the surgery. Whilst the diagnosis is disappointing it explains the pain I’ve been in for the last few years. I’m just keeping my finger crossed the x-rays won’t show it in my hips and ankles too.

Before I sign off, Spoonies it’s cold outside! Please if you find you are affected by the cold spend that extra spoon wrapping up warm or having a longer bath. Practice self care. This time of year can be hard, I know I’m suffering, so be kind to yourselves.

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