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The UKFibromyalgia Forums • View topic - Hi



Hi

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Hi

Postby Acei » Sat Jul 30, 2011 9:05 pm

Hi everyone,

Apologies for the length of the mail in advance, but this has been a long journey. I’m a 45 year old male living in Dublin and here’s my story.

I’ve been told by a rheumatologist that FM is the most likely cause and a recent MRI will confirm it. I’m to see him for the results next Wednesday.

It’s a long story that goes back to 1986 when I was 19. I was running competitively and was very injury prone. Specifically shin splints, stress fractures and lower leg tendonitis. As my back was very inflexible – particularly forward bending. I was sent to a rheumatologist for a consultation. After a blood test and x-ray, I was diagnosed with the early stages of Ankylosing Spondylitis. I eventually had to give up running due to recurring injury and took up other non-competitive activities such as cycling and walking.

Over the years, the AS didn’t seem to get any worse and once I wasn’t running, I wasn’t experiencing pain. I’m tall and had occasional back pain, but nothing serious. As the years went on, I began to doubt the AS diagnosis as it is a progressive illness and certainly wasn’t getting any worse as far as I was concerned.

Pain was also one of my symptoms. I started having problems particularly in my back and legs. However, since I had an AS diagnosis in 1986, this was presumed to be AS.

Moving on to three years ago. A lot happened in the intervening years including many consultant visits, realising I had a gluten allergy (although I’m not coeliac) and lots of money spent on orthopaedic beds, seats etc. so I could function from day to day.

The consultant physician that I had seen occasionally over the prevailing 17 years retired. A young doctor took his place and I started to hear good things about him. I paid him a visit and he sent me for the usual blood tests. Again, everything came back normal. However, he said there was another level we could go to. Nobody had mentioned this before. He admitted me to hospital and did a week of tests including a 12 hour cortisol level test. This test showed that my cortisol (adrenaline) levels were low (extremely low) especially first thing in the morning. This was the first time since May 4, 1990 that something physical was diagnosed. Further tests showed that it wasn’t actually my adrenal glands that were the problem, but my pituitary gland as it wasn’t producing enough of a hormone called ACTH which stimulates the adrenal glands.

I was prescribed hydrocortisone twice per day which has helped, but again wasn’t the answer. There are three things that have helped the condition significantly over the years. The first was an anti-depressant, the second was a gluten free diet and the third was hydrocortisone. The consultant can’t give any reason for the low ACTH and suggested it could be due to my Asthma medication. However, that’s unlikely as I’m on a cortisone based asthma inhaler now, but wasn’t in 1990 when the condition started.

As you would expect, I did a lot of reading around low ACTH and FM was mentioned. I had heard of FM before, but wasn’t sure what it was. As I read through the list of symptoms and other people’s experiences, I realised that it could be a strong possibility. I know it’s possible for you to convince yourself you’re three months pregnant if you read though all the symptoms, but there was too much in common with FM.

At my last visit to the consultant, I mentioned FM. He admitted that it had crossed his mind as a possibility. He was aware of the AS diagnosis and suggested it would be worth discussing FM with a rheumatologist if for no other reason than to get the AS checked out.

I saw the rheumatologist last Wednesday. I explained the AS diagnosis in the long distant past. He examined me and said that he’d be very surprised if I had AS. As it was diagnosed when I was 19 and I’m now 45, he would have expected it to progress to a stage where I had little or no movement in my lower back. However, the movement is pretty good. He contributed the poor forward movement to short hamstrings rather than a limitation in my spine.

He looked at my other symptoms and suggested that I go for an MRI. That will determine whether I have AS or not. If that’s clear (which he expects), then FM is most likely.

I’ll let you know how I get on.

Regards,

Ken.
Last edited by Acei on Sat Sep 10, 2011 9:25 am, edited 1 time in total.
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Re: Hi

Postby FluppyPuffy » Sat Jul 30, 2011 9:29 pm

:wave: Ken :welcome: to the forum :penguin:

A lot of what you've said about your journey to try and find the reason for your pain and symptoms is similar to what a lot of us have gone thru :facepalm: :facepalm:

Your consultant sounds like a good guy, and the rheumy you've seen sounds a decent one as well :mrgreen: :mrgreen: Whatever your MRI scan shows or doesn't show, I hope you finally get a definite dx, then hopefully you'll be able to start on a suitable treatment plan to get some relief :fingerscrossed: :fingerscrossed:

Definitely let us know about your results and what happens with your appt :fingerscrossed: :fingerscrossed: :fingerscrossed: you get the answers you've been looking for 8) 8)


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Hi

Postby Niki d » Sat Jul 30, 2011 9:34 pm

Hi Ken,
It's really great to see so many new people on here. I have had fibromyalgia for 14 years now, it started after my husband had a massive stroke. But I was told I had AS for about the first 4 years as were my 3 sisters. But now are are told we all have fibro.

Anyway welcome gentle hugs niki
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Re: Hi

Postby Acei » Sun Jul 31, 2011 12:39 am

Thanks for your supportive comments and welcome. This forum is a great resource.

Fluppypuffy - "If your dog doesn't like someone, then you probably shouldn't either". That's so true!
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Re: Hi

Postby denys » Sun Jul 31, 2011 10:34 am

Hi Ken and :welcome: to the forum hope we can help you
Denys

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Re: Hi

Postby shazq » Sun Jul 31, 2011 12:51 pm

Hi Ken :welcome: to the forum.
Hope you get some answers soon. :goodluck1:
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Re: Hi

Postby FluppyPuffy » Sun Jul 31, 2011 7:53 pm

I think my doglet is a better judge of people than I am Ken :facepalm: :facepalm: There are some people who I've thought were OK, but she wouldn't go near them, no matter how many times she met them. They then showed their true colours where we were concerned and the doglet was right to be wary of them :facepalm: :facepalm: :yikes: :yikes:


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Re: Hi

Postby Acei » Wed Aug 03, 2011 7:23 pm

Quick update. Got the MRI done last week and saw the Rheumy again today. He confimed that I definitely do not have AS. That wasn't really a surprise and more or less expected. However, there is some early stage disk damage (not too serious) that I'll need to get physio for.

He told me that my symptoms were "FMS related" without actually saying "you have FMS". I'm not sure why, but don't really care as long as thing improve. He suggests that many of my symptoms are due to not sleeping correctly and basically went onto explain the symptoms of FMS.

He told me to get back to moderate exercise and also prescribed Lyrica which I have to build up slowly over a few weeks to see if that helps the sleep. He's confident it should. My GP will increase the Lyrica if necessary and I only need to go back to the Rheumy if I continue to have problems.

The exercise wont be easy, but I'll start building it up slowly. Mostly walking and swimming.

I'll let you know how I get on.
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Re: Hi

Postby FluppyPuffy » Wed Aug 03, 2011 9:20 pm

Start very gently with the exercise Ken and increase it at a rate that's right for you. Don't be too surprised if it makes you feel worse when you first start, and possible as you increase things. Hopefully the lyrica will help you. It takes a while to get into your system and build up for you to feel any effect, so that's another thing to be aware of as well :facepalm: :facepalm:


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