Tuesday, 10 March 2015

A Little Health and Physio Update

My thoughts have been somersaulting around in my head like a rogue acrobat these last few weeks. I've tried to purge those thoughts on to paper so many times, but every time I've tried, the words just haven't come. I guess I've needed some time to let recent developments and emotions sink in, and for my thoughts to unravel.  


The reason why my head has been all over the place is because so much has been happening with my health and health care lately. As some of you will know, over the last few months I've been working with a new physiotherapist / osteopath to see if anything can be done to reduce my chronic back pain, and improve my quality of life, without going under the knife. Eager to avoid surgery- the thought terrifies me- but get my life back, I've been exhausting different treatments with my osteopath, and giving everything my best shot.

Since my first session with him in late October, we've worked through soft tissue, massage, cranial sacral therapy, acupuncture, and manipulation, and that all follows the round of spinal injections I had with my spinal specialist late last Summer. It's been a completely different approach to the small amount of physiotherapy I received on the NHS, but since their generic stretches and exercises never led to any improvement, my new osteopath decided to try a different route with me.

I willingly agreed to try every treatment he offered and with an open mind, knowing that I have nothing to lose. I don't think I'm in a position to be turning down treatment three and a half years down the line. A treatment will either work or it won't, but I won't know for sure unless I give it a shot. It's all just a game of trial and error, and I owe it to myself to try all options.

Though it's a fact of life that sometimes trying just doesn't make a difference. Despite my best efforts, not one of the treatments I've tried so far has led to even a tiny speck of improvement; in fact, many of them just made things worse!


I came back from every appointment in even more pain than when I got up that morning. The persistent kind of pain that over stays its welcome like an imposing, detestable relative that can only be tolerated in small doses but comes to stay for weeks on end, until it feels like they'll never leave. This intense level of pain would settle in for up to a fortnight after each session, and on several occasions, it stopped me from even getting out of bed unaided. I often didn't have the chance to recover from one appointment before moving on to the next, but, of course, that's to be expected with physiotherapy... even if most of my treatments weren't even vigorous or invasive, and the extra pain didn't eventually result in improvement.

I never let it break my spirit or determination, though. The outcome of these sessions rarely had a negative effect on me mentally or emotionally; somehow I remained laid back and up beat. I see my situation as "it is what it is", and it's so normal to me now that it doesn't often get me down; I tend to remain cheerful and undeterred. I know I'm doing it for my own good. I just made sure I got myself to each appointment, did what was asked of me to the best of my ability, and worked on getting through one day at a time. That's all anybody can do, right?

My osteopath is baffled by how every little thing causes me pain, and how badly my body responds to touch. He says from a musculoskeletal point of view (and his), it just doesn't make sense to him. Apparently having Bertolottis disease (spine fused to my sacroiliac joint), arthritis in my lower spine, torn, herniated, and degenerated discs, sciatica, and a few other problems isn't enough for this man! It's more than enough for me! Ha ha!

He was convinced that there was something else underlying that had yet to be discovered, and after he found the arthritis in my spine in December, we had a chat about my history of joint pain during a session of acupuncture. The short story is from the age of twelve, I regularly suffered horrendous aches and pains in my joints, particularly in my legs, feet, and arms. It was so bad I was often in tears, I often walked with a limp, and had to be signed off p.e. for my last two or three years of secondary school. My legs gave way from time to time, which led to me falling down the stairs at school on three separate occasions. My doctor just dismissed it as growing pains, the physiotherapist he sent me to just called me fat (I wasn't at the time!), and most people just thought I was making it up. It continued throughout my teens, but it did ease a little by the time I was in college... or at least I thought it had. I began studying animal care at the age of sixteen, a few days before 9/11, and for the next decade I worked with animals and in retail, doing back-breaking manual work on a daily basis. I did a hell of a lot of heavy-lifting, and when I came home from work in pain, unable to move most nights, I just thought it was because I was working too hard! I know now that it was mostly down to the undiagnosed conditions; the same ones that are causing my symptoms today! I don't know why I didn't make the connection until I went private and my conditions started to be diagnosed; I guess I'm not the brightest crayon in the box.

After going over that story, my osteopath decided to arrange for me to get blood tests, so he could find out if there was anything unusual with my inflammatories which might diagnose or rule out a few things. I had to go back to my (NHS) doctor's surgery to have them done, and something told me it wasn't going to go smoothly. 


The actual blood tests weren't a problem at all; it was going back to see my GP- twice- for the results that made me want to bash my head against a brick wall. The first time, he didn't have all of my results back, but he wouldn't explain the ones he had. He just mumbled something about rheumatology and arthritis before ushering me out the door. In the end, I had to ask for a copy of  the results and turned to Google to make sense of them! When I went back for the others a week or so later, he just told me they came back negative, which after last time made zero sense. Again, I asked for a copy of the results for my records, and he kicked me out within two minutes. I can't begin to tell you how stressful and frustrating I find appointments with that GP! Not in a distressing way; just that he makes me wants to bang my head against a hard surface. He's a nice man, but he's just so useless.

I went back to see my osteopath after both of those appointments, and he was equally confused by what the GP had told me. The first piece of paper told us that there were abnormalities in my blood. My plasma b proteins, for instance were over 27, but a normal level is less than 5 (!), which showed my inflammatory parameters were very high. (Meaning I have a lot of inflammation in my body). What annoyed me, more than anything, was that the piece of paper also listed my results from 1998 and 2011, and the levels were higher than average both years, but my GP had never informed me or investigated it. Who knows how different things might have been if he had.

The osteopath told me he was going to arrange a meeting with my spinal specialist (who would have a copy of the blood tests sent to him) ASAP. And I decided I would wait to hear my specialist's prognosis / diagnosis, too, because I just didn't trust what my GP had told me.

Before that session was through, my osteopath decided to try some manipulation on my back. I was concertinaed in to a foetal position, with my arms laced through one of his, and was manoeuvred about like a rusty old hinge. My body reacted so badly to the manipulation, that he couldn't "get in" to my joints and had to scrap the idea. My body is extremely and involuntarily tense 24/7, no matter how relaxed I feel, and because of that, manipulation just won't work on me. 


After we reached that realisation, he sat me down for a chat, and had to be blunt with me. He told me that although he had promised me that he wouldn't give up on me, and that he'd do all he could to make me better, he just didn't think he could do anything else for me. We'd already tried it all. And not one little thing had worked. I understood what he was saying, but the words still stung a little. 

He told me he was going to have a chat with the specialist, who would hopefully have some suggestions on what to try next. If not, then the only other option he could try would be to look at targeting my life style- diet, exercise, sleep, enrichment, and most likely, weight-loss; working me hard in the gym in my trainers. (Trainers? Me? Ha ha! Apart from Converse, I've not worn trainers in well over a decade!)

After that appointment, I left on a bit of a downer, and the realisation that I was running out of options scared me just a little. It really began to hit me that I might never get better, even though I've known and accepted that as a possibility for years. I felt like as I'd exhausted everything with the osteopath that I was getting closer to being sent for surgery- and that terrified me! My specialist has talked about surgery on several occasions, but I've always been adamant that it will only be a last resort; I want to know I've exhausted all other options first. I know it's stupid worrying about things that haven't happened yet or are even set in stone, but I just couldn't stop myself from thinking about it. I'm a naturally anxious person.

I got lost in a dark haze for a couple of weeks following that chat (last month). The depression awakened from its long slumber and hung over me like a little black rain cloud, drenching me with disdain every time I allowed myself to think about my health or health care. I hadn't felt that low in a couple of years, and no matter how hard I tried to fight it, I just couldn't seem to shake it.



Thankfully, the fog lifted a couple of weeks ago, and I'm back to my usual self again. To be honest, that episode was a walk in the park compared to how bad I suffered with it (depression) in my late teens and early twenties, and it seems to be lying dormant again now. I'm back to feeling content, laid-back, and cheerful.

Last week, I got a letter through the door. It was from my spinal specialist, explaining that my bloods showed an increase in my inflammatory parameters, which suggests an underlying inflammatory condition, and that this is the cause of many of my on-going symptoms! Finally, another break through!

I don't know why, but I wasn't surprised by that letter! I knew there was something else going on, and I knew my GP was wrong when he told me my results were negative. When I read the letter, I couldn't help but laugh. I would be mad, if it wasn't so hilarious! This letter just confirms how useless my GP is. This is one step too far for me. Too much has been missed and over looked over the years. I could've gotten better care from a goldfish than this doctor (and several others at the practise), and quite frankly, I'd rather chop off my arm with a rusty blade than go back to see him again. The last couple of months have just reminded me why we went private, and how fantastic my spinal specialist and osteopath really are. Going private really has been the best decision we could've made, and I'm so lucky to have found these amazing medical professionals. The difference between care, knowledge, and initiative has been huge.

At this moment in time, I don't actually know which inflammatory condition I have, although my guess is rheumatoid arthritis (since I already have arthritis in my spine). I need to go in and have a chat with the specialist, to find out and understand what it means for me. I was hoping to see him last week, but a bad cold has been holding me hostage. I'll be phoning up today to arrange an appointment, so hopefully I'll have my answers by the end of the week.

What I do know is that my next step forward is going to be with a rheumatologist. I don't know much about that kind of care, and I don't know where that road will take me, but I'm actually looking forward to finding out. Wherever it takes me, you can be sure I'll be giving it everything I've got, and doing what needs to be done with a shed load of determination. There's still a lot of fight left in me, and I'm not giving up just yet! I owe it to myself and my family to keep on fighting, and I plan to keep on fighting 'til the end.


If you've made it through to the end, thanks humouring me while I've emptied my thoughts, and thank you for reading. I promise to bring you a fashion related post tomorrow.

If you're living with the same or similar health conditions, are going through a similar health care journey, have any questions and / or want to get in touch, please feel free to message me. You can leave a comment, email me, or reach me through any of my social network accounts, that are linked to above in the left hand sidebar.

10 comments:

  1. oh Louise, I can't begin to imagine how frustrating and painful things must be for you, but I'm glad to hear that there's the possibility that they are finally making some progress!

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    1. Thanks, Char. I'm used to it now, but I do think I'm finally beginning to know the whole picture. xx

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  2. Massive hugs Louise. If you ever need someone to talk to please feel free to email me any time. If you do get an RA diagnosis, one of my best friends has a very severe case of it and may be able to help with suggestions re: support pages/websites, aids and a bit of solidarity. xx

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    1. Thanks, Leah. That really means a lot. I'm still waiting to see the doctor to find out, but I will bare that in mind if it is RA. I have done a little bit of reading up already. xx

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  3. There are some GP's who should be struck off (if I'd have listened to one, I'd be minus one child) I'm so sorry you have had such a fecking awful time Louise, I applaud your strength, I just think you are incredible - I sincerely hope you get some answers soon, a diagnosis is such an important step, and please vent away, we are all here for you x x x

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    1. I really do agree with you on that! I'm so sorry you almost lost a child because of one incompetent doctor. I do wonder how some of them are qualified, I really do.

      Thanks for such kind words, Sandra. I know there are plenty of people who've got it much worse than me, and apart from a few bad days and stressful moments with the GP, life really isn't so bad. Thanks to my incredible specialist, I'm slowly getting to know the full picture, and knowing what's wrong really does make a huge difference. xx

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  4. I'm am really sorry you have to go through this, I hope you will get some answers and a diagnosis soon. You are a really strong person to get through it all. xx

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    1. Thanks for such lovely words, Jenny! You're so kind. I think I'm slowly getting closer to a full diagnosis, and hopefully that'll make a huge difference. xx

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  5. I am so sorry to hear that you've been battling with such a useless doctor and I hope you get some definitive answers soon *hugs*

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    1. Thanks, Stefanie. I've been a bit unlucky with the NHS, but thankfully I'm slowly getting somewhere now, and should have those answers really soon. xx

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