Monday, 18 February 2013

Living with uncertainty

I haven't blogged about my health issues recently because (I always thought), I'm not that type of blogger. I'm not into oversharing, or looking for sympathy, or boring everyone rigid with complaints about my health. I'm not even the sort of person who moans on Facebook every time she has a cold, for goodness' sake.

But someone suggested it might be cathartic to do so, and so I'm going to try.

The fact is that I feel very ill. I've gone from being a completely healthy and happy person last summer to feeling as if I'm about 80, and completely miserable with it.

What started as knee pain, and was then (mis?)diagnosed as sciatica, has turned into severe leg pain and all sorts of other unusual symptoms happening to my body. Not surprisingly, I got very depressed and anxious about it, and that didn't help, as I then had a bout of severe insomnia. I'm now taking sleeping pills, which have eventually worked. The other thing I was prescribed was depression medication. This not only didn't work, but caused all sorts of really distressing side effects; shaking hands, muscle twitches, almost a zombie-like state of mind where I didn't really care about anything but still felt miserable. So, I decided to come off them - slowly, as advised. But the withdrawal symptoms have been horrible; burning, tingling feelings in my hands and feet, feelings of numbness, muscles contracting horribly in every part of my body, dry mouth that means you can't enjoy food or drink as much as usual, cloudy vision that means I find it hard to read or actually do my job. 

And now I'm starting to wonder if they really are withdrawal symptoms, or whether it's all part of some underlying condition. I've had blood tests, which were all negative, although I've just been back for more. I've been seen by a neurologist, an orthopaedist, a psychologist and next it's a rheumatologist. I've had three MRIs and am going for another two next week. I spend my life in doctor's waiting rooms, or doing physical therapy, which so far hasn't produced any results. I've tried all sorts of alternative approaches: acupuncture, yoga, chiropractor. All of them just seem to result in more pain. Mentally, I've tried to cheer myself up; with doing stuff with the boys, going out more with my husband, seeing more of friends - all nice things, but again don't help with the physical pain and feeling like crap. I can't do any of the nice outdoorsy things I used to do - running, skiing, hiking. Just doing the dishes and laundry is painful.

What I actually would like at this point in time is a diagnosis. It may not be nice, but at least then I could start dealing with it. I hate the uncertainty, the not knowing how long this will last, the constant sense of horror at what's happening to my life.

What I would like is Dr House to come along, put all my symptoms on a whiteboard, and work it out. (I wouldn't mind if he looked like Hugh Laurie either). What I don't need is another doctor to say: "But the tests are all negative, what are you worried about?" Because at this point, that doesn't help.

And most of all, I want this person back. 


Sarah said...

So sorry to hear this. I am sure you have been tested for Lyme multiple times by now? I too had a very similar 3 year bout like you are saying. I moved from the home we were renting and a week later I started feeling better. Turned out the property had a mold problem we didn't know about. Has your home had a flood or anything like that?

Iota said...

Well, I'm glad you've posted this. It just sounds horrendous.

Sarah's suggestions sound sensible - worth following up.

I don't know what else to say... I think you will find the answer, if you keep looking.

Sarah said...

One more thought, I am American living in the UK (Esher in Surrey). The US also has all sorts of garbage in the food there even organic. Your body could be having a reaction to something you are eating or living near and are allergic to. I couldn't get out of bed for three years, I moved and one week later my husband was heading to Paris and I felt so good ( a major miracle) I was trying to get last minute air fare. If your house has forced air there could be mold in the ducts...all sorts of things. Best of luck and keep trying to figure it out. I did everything you are doing the doctors had no clue. i had a friend who had the same problem, she moved and miraculously was better with no issues again. I I have never had an issue was 15 years ago!

MsCaroline said...

Have been wondering and worrying about you. I appreciate you posting this, if for no other reason than to put your regular readers in the picture. I have been in some similar health situations in my life where no one knew what the problem was, and I agree with you wholeheartedly: almost anything is better than not knowing. At least if it has a name, you can take some action. Thank goodness you're married to the Doctor. I'm sure he has more resources/ideas/ and suggestions than the average husband. Of course, if he's like MrL, he's probably awfully frustrated that he can't fix it - I think that's a pretty common 'man' thing and probably even more so with a medical professional. I have no suggestions to give since I'm sure they have left no stone unturned. I hope Sarah's right and the problem or trigger is location-related - it would be wonderful if you could return to the UK and have all this just disappear. I have a number of friends with chronic 'invisible' conditions (fibromyalgia, MS, Lupus, CFS) and all of them have expressed tremendous frustration with the process (almost a fight at times) of getting a diagnosis and a treatment plan. I'm thankful that you have had all this stuff ruled out, but I know that doesn't help with what you're experiencing now. Sending (gentle) hugs and hoping for some clarity for you very soon.

Kit said...

Sympathy is a given - it sounds terribly frustrating as well as painful. I do hope that Sarah is right and that it could be a simple matter of moving to feel miraculously better.
Or if that has no effect you could go even more alternative - I've been reading about past-life regression and how it has helped many unexplained symptoms and conditions - it sounded pretty way out to me initially but reading Brian Weiss on the subject is fascinating.

Melissa said...

It sounds awful and I hope you feel better soon - or at least get a diagnosis soon. I agree, not knowing what you battling is so frustrating. Perhaps it's your body's way of saying: Move back to England :-) (sorry not trying to be flippant when it's obviously a really rubbish time for you - just want to make you smile)

Anonymous said...

I hear you - I had terrible headaches a while back - prescribed amytriptiline (which made me feel like I was completely off the planet) and finally when a small lump appeared On my skull i was diagnosed with a rare blood disease. The 6 months to diagnosis made me feel terrible. - you think that you're going mad, imagining the pain etc. so I can totally imagine how you are feeling. Hopefully you will find answers soon - that's the worst part, the not knowing.

nappy valley girl said...

Sarah - thanks very much for your suggestions. Yes, I've had the Lyme test (especially after my husband had Lyme earlier this year). We don't have mold, but do have forced air - however, we had 3 weeks away from the house at Christmas and it didn't get better which makes me think perhaps it's not the environment.....I guess it could be food, but I have no idea what.

Iota- thanks, and I hope you're right.

MsCaroline - thanks for the support and yes, it is frustrating for my husband, as he's suggested all kinds of medical approaches/investigations and none have worked so far. It's also very difficult for a partner to understand exactly what you are going through, especially when nothing seems tangibly wrong but you are obviously not yourself. I actually live in dread of being diagnosed with something like fibromyalgia, because I know a lot of people think it isn't a real disease - and I know what I have is very real.

Kit - past life regression sounds a bit scary. I still have a firm belief that what is happening now is to do with now, not whatever traumas I've been through in life (and there have been a few). Still, I could be wrong.

Melissa - perhaps it's my body's way of telling me NOT to move back...I don't know, just the thought of organizing an international move at the moment is terrifying me, when I feel so debilitated just living from day to day.

Anonymous - you clearly understand and I'm sorry to hear about the blood disease, I hope the doctors are able to do something about it now.

Muddling Along said...

You poor thing - hope that they can find out what is wrong really soon and start working on getting you better

Must be incredibly frustrating and worrying

Sending love and get well soon vibes

Expat mum said...

Goodness NVG this is awful. My sister has just had a dermatology diagnosis after ages of doctors trying to figure it out, and you're right, it's a relief just to know.

It might be worth trying to find someone who can link your health problems to your psyche, if you know what I mean. I had chronic, debilitating migraines for about three years at the same time as I was having such severe allergies that my eyes would look black and blue. It went on for about two years with no explanation and no successful treatment, and yet when I look back on it now, I was very stressed for various reasons and definitely not at my happiest.

AliBlahBlah said...

I am so sorry. There is very little worse than feeling dreadful and just having to get in with things - especially when you're in the dark about what it is and how to go about feeling better. It sounds very fibromyalgia-like to me unfortunately. Good luck, we will be keeping our fingers crossed for you and sending positive vibes (yes I've been living in California that long....). I really hope you get a diagnosis and start to feel better soon.

Almost American said...

Ugh - how miserable! It's bad enough when you don't feel good and you know why, but to have no idea what's causing it or how you can get better . . . and then even the 'normal' twinges become suspect!
Over the last few years I've learned how little doctors sometimes know about what's going on in our bodies. I hope they can find an answer for you soon!

Julie said...

Sorry to hear this, and I hope you get an answer soon x

Nota Bene said...

Hey hi...and there was I assuming you were on the road to remiss of me not to keep closer tabs on what's going on over there. Very sorry. I do hope someone works out what's wrong...the sooner the better. Hopefully the boys are giving you some cheer and support.

NB x

Metropolitan Mum said...

Hi there! I have been catching up with your blog and am so so sorry to read this. You've got all my sympathy and empathy. Rant on if you feel like it and if it makes you feel better - we are all here to listen. xxx
PS: Love your stages of life series. Off to read more now.