The Dentist

It’s 13.20pm on Tuesday 17th October and I am here stressing to high heaven because at 14.15pm I will be in the dentist’s chair. Like every single person I know with EDS, I hate the dentist. I am only going today so that I don’t get kicked off the list and end up without a dentist. The last time I was there it was a nightmare, which you can read about here in my post Blind Panic .  I am still really angry that he didn’t listen when I told him local anesthetic wears off on me very quickly. He obviously thought he knew better. I ended up chickening out of the hygienists appointment because I was having panic attacks a week before it was due. So today could be very interesting.

 

A few months ago one of my back teeth disintegrated when I was eating some chocolate. I wouldn’t have minded but I was nibbling at it with my front teeth when the back molar (upper right 7 I found out this afternoon) decided to just fall apart. I know the dentist will want to fuck about with this tooth, be it a crown etc but he will be told by me that I want it pulled if he wants to play with it. I don’t do root canals or anything other than a straightforward filling with my teeth. The reason behind this is I have a shockingly low pain threshold when it comes to my mouth. Anywhere else on the body I am an absolute trooper but I never get adequate pain relief when they are messing about with my teeth. At 43 I believe I am entitled to call the shots when it comes to my teeth.

 

I know some of the low pain threshold with my teeth is caused by the abject terror and stress a visit to the dentist causes me. Me and Dentists have never got on, probably because for a lot of my life EDS hadn’t been diagnosed, it didn’t seem to matter to the dentists treating me if there were tears rolling down my face and I was screaming whilst they were carrying out treatment. I was to be ignored because I’d had anesthetic, so I couldn’t possibly be feeling anything. The problem was I felt everything. Now the association is set in my  mind that whatever the dentist does will mean pain to me. My last dentist was brilliant, very patient and understood EDS. She had got me to the point of not being absolutely terrified, which was quite a step forward. Unfortunately she has left the NHS and now practices privately. I am hoping today that I will be able to find out where as I need to build my confidence back up and hopefully get her to have a word with the guy that is my dentist now. I am hopeful that due to me almost ripping the drill out of his hand last time that it was enough of a frightening experience for him as it was for me that he takes me seriously. But it’s been a long time since I went…………..deliberately.

 

There has been a lot going on here, decorating, a trip planned and me being much more unwell than usual. I had a very bad flare up of Hidradenitis Suppurativa which then had an impact on my hemifacial spasms (**sarcasm) no really it affected my MG like symptoms really badly, (I have been exhausted, very weak muscles and ptosis coming on within 2-3 hours of taking mestinon). I have been on mega doses of antibiotics trying to avoid any surgical intervention as this is the worst flare up I have ever had. I am still not out of the woods as the antibiotics are due to finish shortly and the abscesses although have reduced in size are still there. If I could get out of going to the dentist today (not due to fear) I would have as I am utterly exhausted again today.

 

I am going to have to go and sort myself out ready to leave. The time is rapidly approaching for my appointment. I will let you know how I got on when I get back.

 

* * *

 

The good news is I am still alive the bad news is I need a filling on the tooth that disintegrated. It was quite amusing as the dentist didn’t remember me, so I gave him a brief overview of our last appointment. Which he laughed and then checked the notes, saying  “oh my goodness yes, I don’t remember it but it’s all here!” . I explained to him again that I am an absolute wuss when it comes to dental work. I told him that I believed a lot of it was psychological due to years of painful dental treatment when I haven’t been believed when I have told the dentist I can feel whats going on. That I now have a deep anxiety about the dentist and that I had chickened out of going to the hygienist in March because I had started having nightmares two weeks before the appointment.

 

I still don’t think he 100%  appreciates how very difficult it is for me to attend appointments just due to the fear but he was so gentle today, a completely different bloke than last time. Not that he was rough last time but he had a different attitude. Half way through the appointment he said “You can’t have adrenaline in your injections can you?” to which I nodded as his fingers were in my mouth. He said “ I remember you now, you faint if you have the adrenaline” again a gurgle and a nod for a reply from me. Obviously there aren’t too many of us that actively request no adrenaline.

 

I have to go back the second week of November for my filling, which is fine by me. It gives me a chance to chill out a bit after this appointment. I am utterly drained of energy now. I was better this time on the lead up to the appointment probably because there is currently so much else going on, I couldn’t sit and focus on it. Of course in three weeks I will have to go through all the stress again knowing I am going to have to have a filling but that’s life.

 

On the way home Jay said “I just don’t get why you have such a low pain threshold at the dentist and why you get so anxious, you’ve had lumbar punctures and all sorts of horrid procedures done without adequate pain relief” I agreed but as I have said I think it is a lifetime of painful dental treatment that has left me like this. He knows how hard it is for me to go and was telling me how brave he thinks I am for going. If I could get away with not going I would but I can’t having had dental abscesses before I need to be on a NHS dentists list.

 

Being a grown up really sucks sometimes.

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EDS how it affects me three years on

Last week as part of Ehlers Danlos Syndrome Awareness Month, I recycled a post I wrote in 2014. As with any illness / condition / disease when you look back you can see how things have changed. Some things may have improved and new symptoms may have reared their ugly heads. Ehlers Danlos Syndrome is no different, I sometimes think it’s like playing a slot machine each morning never knowing what the combination of joints giving me pain (and problems) will be that day.

 

I am still as bendy as I was at this point three years ago, although getting my thumb to touch my wrist isn’t as easy as it was before, my thumbs now seem to sublux (partially dislocate) or strain the ligaments on an almost daily basis. Who’d have thought something as simple as taking my trousers / underwear down would be enough to cause pain but it does. Looking back on the photo’s of my fingers it is clear that they are more flexible now than they were two years ago. Although some with EDS will stiffen up with age despite being 44 this year, I seem to be getting more lax. I wonder if by the time I am 80 I shall just be a floppy mess unable to move due to the collagen (the glue that holds us together and is what is faulty in EDS) just being stretched beyond belief.

 

I wrote at the time that my elbows are normal and as usual when I write anything about my condition, it’s like an open invitation for things to change dramatically. Doctors don’t seem to be able to agree on whether my elbows are hypermobile or not, to me they don’t seem to be but then it’s difficult to gauge what a normal range of motion is when you have been surrounded by anything other than the norm. My normal is growing up within a family that is hypermobile, so I never considered my flexibility to be anything other than that. My elbows can be very sore first thing in the morning, as I am asleep when I am doing the damage I can only assume that I am over extending the joint. It makes my elbows really ache and feel clicky, I can feel tendons and ligaments rub over the bones.

 

My spine is still the area of my body that causes me the main problems. I am currently waiting for a spinal x-ray to try to find out what’s going on at L5-S1 level. This pain is very different from my “normal” EDS pain, it hurts when I lie down or sit down and eases off when I am moving. In the mornings I am very stiff and look like a hunched over old lady. After a few hours it eases up but the minute I go to bed the pain starts up again. I have been taking a NSAID and it’s really helping which is the first time a nsaid has ever helped. I am hoping the x-ray shows something as it’s hard going with it affecting my sleep.

 

My fingers are also causing a problem not with them being more lax than they have been previously but with them swelling, clicking and pain. Some mornings I can barely use my hands as they are so swollen. When they are bad the only thing I can do is just wait it out until the swelling starts to subside. My grip is also a lot weaker, so opening child-proof bottle tops is a nightmare, I am struggling with even normal bottle tops because I no longer have the strength of grip I had previously.

 

These are just some of the problems I face with EDS on a daily basis and I could never predict what was going to hurt not hurt the following day. It feels totally random and at times, the pay back for relatively undemanding activity totally disproportionate. I always laugh when medical professionals say we need to learn to pace ourselves as I never seem to have the same energy level on a consistent basis. I never know when I have done too much until hours later and the pain starts. If I paced myself I would never do anything for fear of causing pain or fatigue. Both of which are just a standard part of my day.

 

I was finally diagnosed with EDS when I was 37, my condition suddenly deteriorated in 2007, it took until 2011 to get some answers. Whilst it’s great to find out that no, I don’t have a low pain threshold, yes I can feel things after I have had a local anesthetic the problem now is that aches and pains get blamed on EDS rather than being investigated properly.

 

There also seems to be a blanket policy in many of the hospital trusts that unless a condition is life threatening, surgery (if needed to correct a problem) will not be performed. This is done under the guise of “first do no harm” and the worry of making things worse however unless you’ve lived with this condition you have no idea the levels of pain we can function at. I have bowel adhesions (fibrous bands of scar tissue that have wrapped themselves around my intestines), I had them surgically removed in 1998 (before the EDS diagnosis) because they were causing me to collapse due to the pain they caused on a regular basis. I still get awful periods of time with them, I have to be careful what I eat, so I can’t have raw vegetables as it triggers the pain, yet when I saw a surgeon a few years ago I was told unless my bowel becomes obstructed they won’t operate. I have heard similar stories from other people around the UK, that they have various problems that could be sorted out by surgery yet due to the EDS diagnosis they are told they can’t have the operation.

 

I was so pleased when I got the diagnosis as it finally explained all my weird symptoms but it’s a poison chalice. I have better pain medication but I am pretty much left on my own to deal with medical issues as they arise. Many in the medical profession believe that because there is no cure for EDS it means that there is no point trying to treat us. Now I have the diagnosis the level of help I get is severely limited.
There was a lot of drama recently within the EDS groups on-line as the diagnostic criteria had been changed. Many people diagnosed with Hypermobility EDS would now be classed as having joint hypermobility syndrome rather than Ehlers Danlos Syndrome. Having checked the new criteria I would still be classed as HEDS and to be honest even before checking the new guidelines, I wasn’t that bothered. Regardless of the label most people with EDS or JHS will receive shit care, have their problems minimised or ignored and surgery that would be offered in normal circumstances declined. It would have been far better if the bodies that spent all this time and money on designing the new criteria actually focused their efforts on getting patients better care.

Ehlers Danlos Syndrome and how it affects me

I first published this post in May 2014 for Ehlers Danlos awareness month, as it’s that time again I thought I would share for those new to my blog.

As May is Ehlers Danlos Syndrome Awareness month I thought I would share with you how my bendy body affects me and take some photographs to show you how bendy I am. Now I am well aware that as an Edser I am not supposed to perform “Party Tricks” every doctor I see tells me that after they’ve asked me to show them! The moves I have photographed cause me no pain – I wouldn’t be that stupid to suffer so much for my art!

For those of you unaware of what Ehlers Danlos syndrome is or that are new to it I am going to give you a brief and basic overview. EDS is an inherited connective tissue disorder, affecting the collagen protein in the body. Connective tissue is the “glue” that holds the body together, it connects tendons and muscles to the bones and holds organs in place. Collagen is what makes this glue and in EDS, its a bit defective. Our connective tissue is super stretchy and lax so it means that our joints aren’t held in place properly. Our joints have an unusual range of motion – so in normal people your joints will only move to a certain point. In EDS ours move to that point and beyond – the photo below is of my fingers which are hypermobile.

If you don’t have EDS you will recognise that my fingers should not be able to move this far. I have seen a video of a lady with EDS pull her fingers so far back that they touch her wrist. Thankfully mine don’t move that much.

It is important to remember that EDS is a syndrome ( syndrome means a collection of symptoms) so it affects people differently. You may know someone who is double jointed or extremely flexible ( and probably not diagnosed with EDS) they may when having a look at the beighton diagnostic criteria clearly have EDS but have no pain or any other of the associated symptoms. Where as I have constant pain and joints that like to sublux ( partially dislocate) or dislocate on a daily basis. Also some people find that they have joints that are very unstable (sublux or dislocate) and other joints that are fine and actually normal. My elbows joints are normal and not hypermobile and although I can do this (see photo below) with my thumbs the rest of my thumb joint is stable.

My doctors have classed my EDS as type 3 or Hypermobility, ( there are a few different types of EDS) I was diagnosed by a rheumatologist who I paid to see privately. Getting a diagnosis was one of the few things that my GP and I have ever disagreed on, he felt I didn’t need it I said that I did. Since I have got the diagnosis it has changed the management of my pain, my dental treatment and provided some much needed answers as to why I have had pain from such a long age. I was still being told I had growing pains at 26 when I visited a gp for my leg pain! You maybe wondering why my dental treatment changed after my diagnosis well with EDS we are more prone to periodontal disease (gum disease) and also we have a problem with all local anaesthetics. For some of us local anaesthetics don’t work at all for others, like me we burn through locals really quickly. My dentist also has to give me a local anaesthetic that doesn’t contain adrenaline. Due to my autonomic dysfunction adrenaline causes me to have tachycardia and that in turn can cause me to faint when getting up from the dentists chair – which I have done.

The worst area of my body affected is my spine which is very hypermobile from the back of my skull to my coccyx (tailbone) those little vertebrae rarely like to stay in place. My neck is hypermobile and I have what’s known as “owl neck” so I can move it not all the way around but too far on both sides. I also found out by chatting to someone on twitter that doing (see photo below) is not normal. You see thats the thing with EDS we have no idea what the normal range of motion is for a body part as we have never experienced normal.

I have four discs at the base of my back that I can’t even touch with my fingers without me flying through the air. I never have a day without some sort of back issue – muscles going into spasm, discs being naughty by locking up so I can’t stand up you name it my back can do it. You may have heard me mention before how I have to go to bed really early its because by around 5pm I am struggling to hold my head up and my back is starting to resemble the letter ‘C’. My muscles work hard all day trying to support me and by 5pm they are worn out and throw in the towel.

Although it may seem like fun that I can do all these things and I have the bonus of looking young for my age (the only good thing EDS has ever given me) life with EDS is not fine and dandy. EDS produces fatigue as our muscles have to work around 5 times harder than a normal persons every time we move. EDS is almost certainly the cause for my autonomic dysfunction its estimated around 78% of people with Ehlers Danlos Syndrome have autonomic nervous system issues.

There are currently no genetic tests for EDS Hypermobility ( other forms of EDS have genetic tests) and no cure for any type Ehlers Danlos Syndrome only treatment which consists of pain relief, physical therapy and bracing joints.

Throughout May I will be blogging about EDS to explain what its like to live with this condition.

Useful links

NHS CHoices explaining EDS and the types of EDS

Ehlers Danlos Support UK UK Charity for EDS patients and produces an excellent magazine called Fragile Links

Hypermobility / EDS and the other issues it can cause in the body– HMSA Charity (HyperMobility Syndrome Association)

Beighton Scale from the HMSA website

 

While I was getting my husband to take the pictures the dogs tried to join in. This is Mollie trying to give me a kiss!

 

 

This is me giving up as all the dogs tried to join in!

 Sunday 4th May 2014

I am very sorry this post was supposed to be published tomorrow. Unfortunately I am still trying to get to grips with WordPress and scheduling posts. My apologies  Rachel x

Trainspotting (or a bit of a cock-up by me)

 

You know your life is a bit sad when you manage an almighty medication cock-up and see the immediate silver lining as being “well at least I have a blog post for next week”. Such were my first coherent words to my husband this morning after a night of sheer hell. All because I fell asleep ridiculously early and then forgot to take my medications, one of which is morphine.

 

I take morphine twice a day as a 12 hour slow release tablet. Before morphine I couldn’t get out of bed and had been stuck there for the majority of the time for several months. This was thanks to a dr who decided it would be a fantastic idea to have me walk the length of a hospital corridor. Whilst I managed it and may have seemed ok to her, the following day the repercussions were felt throughout my body. I had a flare up of bursitis in both hips, plantar fasciitis in both feet, my knees throbbed and my back felt like I had been trampled  by a horse. I worked my way through every other non opiate painkiller before both my doctor and I conceded defeat, there were no options left. At 37 I wasn’t prepared to spend what will hopefully be a very long life in that amount of pain on a daily basis.

 

In all the years I have been taking morphine (for the pain caused by having EDS and the early onset arthritis I developed because of it) I have never missed a dose. Over the last 6 years I have on occasion been a few hours late with no problems. I have always attempted to educate those who read my blog (if they don’t understand) the difference between addiction and dependence. An addict uses drugs to get high, someone who is physically dependent on morphine is using it to relieve pain. I have never got high and if you bumped into me in the street you wouldn’t know I took morphine.

 

However the results are the same for the addict and those physically dependent on a drug, if they miss a dose. The body goes into withdrawal. I am now 12 hours past the time I realised I had gone into withdrawal and I still feel like shit despite taking my morning meds. I am hoping tomorrow I feel better and my body will be more settled. Let me also tell you this, as long as there is breath in my body I will never miss a dose again.

 

I wrote in last week’s blog post that I went to the doctors, I was exhausted for the rest of the day. At 18:30 (yes I do know how rock and roll I am) I went to bed. It was too early to take my night time medications which I take between 19:00 -20:00, so I thought to myself, “no worries I will take it later”. I then promptly went to sleep, which I never expected to do. I thought I would listen to the radio and then take my tablets after The Archers had finished at 19:15. I didn’t hear The Archers, in fact I don’t remember hearing much of anything I just conked straight out.

 

I woke up at 21:30 drenched in sweat, now there is nothing unusual in that, I can suffer from reactive hypoglycemia. I even worked out in my head that the night sweat would be in line with it happening within 4 hours of eating. I was so tired I just rolled over and went back to sleep again. I then proceeded to wake up at 22:30, 23:30 00:15 01:30, 02:15 and then finally at 03:00am. Each time I woke up I was absolutely drenched in sweat feeling both boiling hot and freezing cold at the same time. On each awakening I was also feeling more agitated, panicky and nauseous. I thought I was coming down with the flu or something. I had also had to change my pyjamas 3 times and turn my duvet over twice as it was soaked through. I was still at this point blaming reactive hypoglycemia but knowing in my head that the time frame for this to occur had passed.

 

It wasn’t until around 03:20 when Willow knocked my pill-mate (box that divides pills into days/ mornings/lunch/ tea/ evenings) off the bedside cabinet and I turned the bedroom light on to put it back, that I realised Wednesday evenings pills were still sat in their compartment. I checked my mobile phone to see what day it was. My first thought was “shit, no wonder I feel so awful” then it was “what the hell do I do?” I was 8 hours past the normal time of taking them but 4 hours away from when they should be taken. I really didn’t want to mess up the times I take my meds. So I opted to take 10mg/5ml Oramorph and 10mg slow release (from a larger dose) out of my morning meds, to see if it would stop the withdrawal I was experiencing.

 

I tried to go back to sleep but I was still hot and cold at the same time and dripping with sweat. I decided to get up and have a cup of tea in the hope it would make me feel better. As in the half hour I had been tossing and turning I’d had to get up twice for a dump. (I know I am such a lady but that’s what opiate withdrawal does to you and it’s not pretty.) Jay was up when I got downstairs and I was in such a state I could barely speak. I was feeling really nauseous, agitated and angry. I was just praying that at some point the morphine would take the edge off. But as luck would have it my stomach was on a go slow and absorbing my medication really slowly.

 

At 6am I felt like I had the full-blown flu, I was sweating buckets and still feeling like I was burning up whilst be freezing cold at the same time. The nausea was getting worse and I was convinced I was just going to puke all over the lounge floor. I was counting down the minutes until 7am when I would be able to take my morning tablets. It took until 10am for me to feel anything like human again, even then though my pain levels were really high and I was exhausted.

 

For the remainder of the day I felt pretty grim, body aches, no energy, I felt really tearful and out of sorts. All day long all I could hear in my head was the song from the film Trainspotting Lust for life by Iggy Pop, which did make me giggle. Especially when I would catch myself singing it every now and again. I went to bed really early again but set an alarm on my phone to remind me. I was so determined not to go through the same thing again I couldn’t sleep until I knew I had taken my pills.

 

I have a set routine normally when it comes to taking my meds, normally if I go to bed early I set the alarm on my phone so it wakes me up. That night I was so tired I couldn’t even think straight. Also I am good at setting the alarm on my phone and then just turning it off when it sounds and not taking my meds. That is what normally happens when I fall asleep early and this is what has happened all the times I have taken them late. Jay would normally come in and check that I have taken them but he was also shattered that night and forgot. He also hates waking me up as I can be thoroughly evil when woken. Thrashing around thinking I have been attacked or being verbally abusive due to being semi conscious. So it’s hardly a nice thing for him to have to do.

 

I am now forcing myself to stay downstairs until just before 19:00 so that I don’t fall asleep before I take my pills. I never, ever want to end up in that situation again . Even attempting to put into words what my body felt like doesn’t even come close. It  took 24 hours for me to feel fully back to normal and for my pain levels to come down to normal. Mixed in with feeling shitty was also the anger at myself for forgetting to take them in the first place. I don’t mind if I make myself sicker than normal for a few days due to enjoying myself but to make myself sick through something entirely preventable made me seethe. The old negative self talk really kicked in, I didn’t have a nice word to say about myself. It was just so incredibly frustrating.

 

So I shall leave you with the track that has haunted me ever since Iggy Pop’s Lust for Life

Moaning Again

It seems currently I can’t help myself, I appear to be moaning all the time in my blog posts. No outside observation has drawn my attention to this, it’s just I am starting to bore myself with it.

 

In January this year I went gluten-free after my mum’s diagnosis of Coeliacs Disease, four weeks ago I cut out dairy, which effectively means I am now vegan (after being vegetarian since birth). I am finding it relatively easy although in the second week I was craving cheese like mad. I did however work out it wasn’t the cheese I wanted but the salt it contained. I won’t lie I have found since giving up dairy the burning pain I had in the majority of my joints all day every day has gone. Which is great but the withdrawal from dairy has been hellish, for the first three days I had an almighty headache that I just couldn’t shift. Then recently I have had to endure the mother of all hidradenitis suppurativa flare ups, which has been incredibly uncomfortable and needing antibiotics to treat them.

 

I know its very early days in my whole food plant-based journey, 4 weeks is not enough to remove all signs of previous dairy consumption from my system but I really would have rather have the widespread burning pain in my joints daily than live with the pain my back is currently generating.

 

Monday I woke up with a trapped nerve which meant I could barely walk, the pain went from just above my bum, through my buttock, down my leg and into my foot. Most of Monday was spent chasing down pain levels that would have had me weeping with despair had I the energy levels. Tuesday it wasn’t too bad thankfully as for the first time in nearly a year I had a full head of highlights done. Luckily my hairdresser comes to the house but it’s still exhausting. By the time I got up from the chair I was left in severe pain in both arse cheeks. This was muscular in origin but it still really hurt. This morning I feel like I have been kicked by a horse in both bum cheeks, I have nerve pain running down my left leg and the whole of my pelvic girdle is on fire. Iliac crest pain for me is one of the worst types of pain I have to deal with as absolutely nothing stops it. I am currently sat on my heated throw hoping that once again a few hours of this will reduce the pain enough so that I can walk without pain.

 

Although I am sleeping better since the introduction of melatonin in January or maybe it was December (pain is just clouding my mind at the moment), currently I am exhausted from the minute I wake up. The quality of sleep is just not there and I do think my back is playing a major part in this. If it’s this painful whilst awake what the hell is it like when I am trying to sleep? I say trying because currently I am waking up every few hours feeling like parts of my body are being crushed. All this despite having a memory foam mattress and memory foam mattress topper. I feel groggy all the time during the day, like I have only just woken up. I hate not having a clear head as it feels like everything is a constant fight all the time. I can only describe it as feeling like I am hungover 24/7, which is disappointing when no alcohol is involved.

 

Even on days when my back is relatively ok by the evening the pain has returned, so there is no escape. When I can’t think clearly I don’t risk doing Pilates and injuring myself but it’s a vicious cycle. I need to start the Pilates to build up more core strength but I am paralysed by pain. At some point I will have to take the bull by the horns and just do it. But as I have said before part of my fear of doing the exercises is because that is how the leak started last year. I am also terrified of being stuck on the floor alone and having to call Jay out of work. I just wish I could wave a magic wand and have it all go away. I would then give everyone else a go on the magic wand and let them reap the benefits.

 

So I find myself moaning again, which I hate doing, especially when there are others out there much worse than me.

Touch Wood

For a while now I have been experiencing a good period with my head pain (caused by a CSF Leak). The last time I ended up completely incapacitated by it was 23rd December (2016), I still have headaches daily but they are much lower down the pain scale and there have only been two days since the 23rd December that I have ended up having to lie down for a few hours.

 

It scares me to write this as back in the height of summer I also experienced a good period. However the longer the good period went on the more I tried to resume normal life. I pushed it too far and ended up back to being incapacitated through pain, I was devastated. This time I am being much more cautious. I know bending triggers head pain, so I have been trying to limit that as much as possible. There are just so many things that you do without thinking that involve bending it gets very difficult to avoid it altogether.

 

In the past when I have written about any improvement in my health it always comes back to bite me on the arse. No adhesion pain for a few months, casually mention it in a blog post and then I will spend weeks with an abdomen that hates me. No migraine, the same things happens, so I have been holding off sharing the  news that there is a small possibility that the leak has slowly begun to seal itself without intervention.

 

EDS makes you a slow healer, wounds that would take a few days in “normal” people to heal can take months. Sprains that would normally resolve in 6 to 8 weeks can take 4 months or more. In August 2006 I sprained my ankle very badly, to the point where an operation to repair the torn ligaments was being mentioned by my physiotherapist. Finally by the December that year I was on the mend but I haven’t been able to wear high heeled shoes since. My ankles have become too weak, block heels can be worn thank goodness as I would hate to only be able to wear flats for the rest of my life!

 

The normal course of action for a spontaneous leak is several weeks of complete bed rest. I have seen anything from two to eight weeks suggested as conservative treatment. So if my leak is slowly beginning to heal itself, 12 months could be entirely possible because the connective tissue disorder Ehlers Danlos Syndrome (which is entirely the reason why the leak has happened) would cause slower than normal healing. Plus I haven’t spent the last 12 months on strict bedrest, I couldn’t as I would have lost the ability to walk (my leg muscles become very weak with prolonged bedrest) and my back would have never forgiven me.

 

I know I am far from out of the woods, if the summer taught me anything, it’s that the healing process can be undone in seconds by just moving the wrong way. I know the leak is still active as I still have occipital neuralgia and that will be the last thing to go but the pain from this is much less than it has been. Occipital neuralgia often accompanies a CSF leak as the fluid irritates the nerves. When I look back now I realise that the occipital neuralgia was the first sign of trouble.

 

Although an epidural blood patch could potentially cure me if I could heal myself and avoid the need for the ebp I would be more than happy. For treatments of a CSF Leak please click on this link http://spinalcsfleak.org/about-spinal-csf-leaks/treatment/

I have stopped having the caffeine infusions as the head pain is manageable. My husband can tell how much I have improved of late as I am not asking him to pick me up high caffeine energy drinks anymore and I am no longer going through three bags of freshly ground coffee a week. We have been able to spend time together and have watched quite a few films in the afternoons when he has been day off. Something that hasn’t happened for a very long time. I am also managing to sit up until 7pm, which has been unheard of for over a year.

 

I still have photophobia but I am no longer having to wear sunglasses indoors on cloudy days. Car headlights at night still hurt and bright sunny days are a nightmare but considering where I was, it is a massive improvement. I still have headaches but instead of them being an 7 or 8 out of 10 by the end of the day they have dropped to a maximum of 5. I am no longer being incapacitated for days on end. It’s actually quite a strange thing to get used to, after being so ill for a year. Last year felt like my life was just on hold whilst I waited for either my condition to improve or to get the treatment that would probably cure me (the epidural blood patch).

 

I really hope that this situation continues, that I heal myself and can start enjoying life once again. Obviously I am still limited by my other health conditions but last year made me realise just how lucky I was when things could just be so much worse. Fingers crossed that I don’t manage to dislodge the seal that’s stopping my leak by sneezing, coughing, bending or lifting. So although I can now be upright, I still for the time being am acting like I am made of glass.

 

I wrote this piece several weeks ago and was too scared to publish it because as I said earlier in my post, when I do post an improvement within 24 hours whatever it was I said had improved will start up again. It’s now March 9th and I still have only had two days where I have had to spend a day lying down since December. I am really hopeful that my leak is almost healed, I haven’t had a caffeine infusion since January nor occipital nerve block injections. I still have to be careful with bending, as that does cause sharp pain in my head. The photophobia is slowly subsiding, I still sometimes have issues with car headlights at night but it’s no longer as if someone is holding a hot poker to the back of my eyes. I have been forced to take it easy due to contracting shingles back in February, my body still hasn’t recovered. I am easily floored by everyday things and it’s quite common for me to have to have a nap in the afternoon. I am also sleeping, some nights over 12 hours. I would love to say I wake up feeling refreshed but I don’t.

 

So I am hopeful for the first time in ages that I may have finally started to self heal and that this CSF leak will be a thing of the past. Touch Wood!

Back Pain Sucks

For a very long time I have had problems with my back. They first came to the fore when I was 16 and I started work. The job was physically demanding with lots of bending and lifting heavy items (I worked in retail). It wasn’t long until I started suffering from herniated discs and spending a lot of time at various chiropractor’s. I wasn’t diagnosed with Ehlers Danlos Syndrome (EDS) until I was 37, perhaps if I had received the diagnosis earlier I would have been better able to protect my back.

 

When I first raised the possibility of EDS being the condition that was at the heart of all my joint problems and autonomic nervous system dysfunction I was basically laughed out of the doctor’s office. I was told EDS was so rare that if I had it, I would have been diagnosed in early childhood (this from the same doctors practice that told me the pains in my legs that kept me awake at night were growing pains and I was 26!). The fact that my pulse raised by over 30bpm (and could actually double from 80bpm to 160bpm within seconds of standing) I was told was normal for your pulse to raise on standing.Which let’s be honest is factually correct, it’s just a normal person’s heart rate will rise 15-20bpm on standing and then go back to normal within a few seconds and mine didn’t do that.  I left that doctor’s surgery a few months later and joined another practice, where I would get the support to finally end the mystery of the lifelong pain I had suffered.

 

When I did finally get the diagnosis in May 2011, I was told my spine was the most hypermobile joint of my body. It made sense as out of all the joints in my body my back was causing me the major problems. Whilst working (I left in 2008 medically retired) I found I could not stand in one place for our twice daily meetings without the pain starting immediately. I would be shuffling from foot to foot, finding something to lean up against or on other occasions finding somewhere to sit down. Standing still was agony and it’s very difficult to explain to people that you can’t stand still, when we do it all the time. At this time I was walking our three dogs for over 20 miles each week, walking could be painful when my back was exceptionally bad but I could push through that, the pain was so intense on standing still I would do anything I could to avoid it.

 

Moving is important when you have EDS, if I do not move, change positions every 15 minutes or so my body can become locked in that position. Even a short car journey can leave me being unable to stand up straight. Spending a prolonged amount of time in my wheelchair can leave me being unable to stand or struggle to transfer myself into the car. Last year I spent an awful lot of my time lying down due to the CSF Leak (which by the way touch wood, touch lots of it, looks like it has sealed itself), whilst the lying down relieved the awful headache that accompanied the leak it has destroyed my muscle strength in the rest of my body, particularly my back.

 

For the first time in 12 months I can be upright but due to prolonged bed rest I can’t do the things I want to. My legs shake when I try to stand, my back causes me immense pain when standing. The only way I can explain the feeling is that it feels like I have a lead weight placed on the top of my head and it is crushing my spinal column all the way down to my tail bone. Even walking is painful, I no longer feel like I am walking upright but as if my pelvis may collapse under me along with the bottom half of my spine. My left foot is back to being numb along with parts of my left leg. I haven’t been in this kind of mess with my back since 2014. Then I started to do Pilates to increase my core strength, it worked really well and I dodged the bullet of needing a spinal fusion. I have arthritis in my spine and a flattened disc. It was important to me that I didn’t have the surgery yet because with surgery comes a whole load of other risks.

 

I know I should start doing Pilates again but I am scared. Performing Pilates in 2016 is what “caused” the leak. Well EDS causing weak collagen caused the dura around my spinal cord to tear but I was doing Pilates when it happened. Do I want to exchange the back pain for the return of the head pain and the answer at the moment is no. A few more nights of disturbed sleep will probably change my mind. I wake up in severe pain every morning, due to not moving much whilst I am asleep. My spine seizes up and it becomes very difficult to move. Quite often when I wake my back is in spasm, so I lie there like a turtle stuck on its back until the spasm recedes and I am able to move again. My core strength has gone completely and this is putting more pressure on my spine. It’s a mess, a painful hot mess.

It seems a very cruel twist of fate that whilst my head pain has gone now that I have self healed my leak, that I am now left with pain in another part of my body. No position is comfortable now, sitting, lying or standing it all hurts. I am back to spending life with a hot water bottle tucked down the back of my trousers or like at the moment sat on my heated throw, temperature set to sear!

 

As always I am trying to push through it, increase my muscle strength so that I can get back to somewhere near my level of normal again. There is no stopping due to pain as there is no comfort in it. My painkillers aren’t touching it, like most people with EDS I soldier on enduring levels of pain that would have others curling up in a ball crying.
Back pain sucks, it really, really sucks.