Hi

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hi

Postby monkeypirate » Sat Jan 04, 2014 10:45 am

Hello, I found your forum a few weeks ago and wasn't sure if I should post or not.

I guess I was worried because a lot of people think it's a syndrome only women get. Therefore being a male sufferer the usual sceptisism is even worse. A lot of men have eith never heard of fibromyalgia, or they know a female relative or neighbour that suffers.
Anyway, I decided if I was going to get understanding from anywhere it would be here.
I have read a lot of different statistics, but the general concensus is about 80% of sufferers tend to be female, so 20% male. Also the symptoms tend to be more severe in females.

I try to think when my symptoms started. It really began after I had apendicitis which they caught and operated on just before it was about to burst. I started getting itchy skin which the doctor put down to an alergy and suggested an anti-hystamine. I starget getting pains on the bottom of my feet of all places. I tried to explain it to the doctors but it was difficult. It was like they had been beaten with a baseball bat.

They sent me to the chiropody people who gave me some wedges to put in my shoes.
Then pains in my fingers which were diagnosed as ostioarthritis. I had x-rays which backed it up.
Next came wrists and elbows, then my shoulder and hip.

Last Christmas (2012) my stomach problems started. I won't go into too much detail, but the sort of upset that should clear up in 48 hours, lasted for 10 weeks. I was sent for a colonoscopy which revealed nothing, but the biopsy showed slight lymphasitic cholitis.
Then came an endoscopy from the other end and an MRI because of pains and cramps in my stomach. Along with loads of blood tests they revealed nothing.
Eventually I went back to my own lady gp because by then my energy levels were all over the place. my sleep patterns were eratic. Sometimes I would wake up every hour or so, sometimes I would go to bed at 9 and sleep right through but still wake up feeling like I had been on an all night bender. I regulary fall asleep at my desk at work.

My emotions were up and down. I can't handle stress at all. I get tearful over the slightest thing, which is really embarrasing being a bloke. I lose my temper really easily and I get really down and depressed. I get panic attacks over the silliest thing, like not being able to find something in a supermarket.

If I get too stressed or tired it feels like every injury I have ever had in my life all come back at the same time.
I get dizzy if I stand up without pausing and I am freezing cold when everyone else is boiling hot.

Anyway my doc has at last diagnosed fibromyalgia and arthritis. I've just had some more x-rays on my hips and shoulder and I go back to see her when the results are ready. She wants me to take anti-drepressants and I said I will think about it.

Sorry to ramble on. It's like a tap once I start.

Anyway, thats me. I had to chose a name so I chose the first two words that came into my head, literally.
Last edited by FluppyPuffy on Sat Jan 04, 2014 11:38 am, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
Always be yourself . . . Unless you can be a pirate.. . .Then always be a pirate.
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Re: Hi

Postby FluppyPuffy » Sat Jan 04, 2014 12:05 pm

:welcome: to our little FibroFamily monkeypirate :cow-wave: :cow-wave:

First of all, there's no need to apologise for anything you've said here, quite a few members find than when they first join us all sorts start to come out as it's often the first chance they've had to be able to release some of their pent~up worries with others who really understand how they are feeling :grouphug: :grouphug:

And there's no need to be worried about what others think, it doesn't matter if you are male or female, experience symptoms midly, moderately or severely, once you are given "The F Word" as a dx, you become a member of the family.

There are many, many statistics across the web, some of which are more helpful than others. What you have read about FM seeming to affect more of us of the female persuasion does seem to be right. However, more and more men do seem to be given FM as a dx, which has had people wondering if the ratio of women to men being affected is quite right, and one of the thoughts being considered is that there may be a lot more men affected by FM than anticipated, but with the ideas associated with FM about it being a woman's condition, and the stereo~typical macho image that is supposed to represent every man on the planet, it has stopped most males coming forward and acknowledging that they may have some problems.

Your route to getting some answers and a dx, and what you experienced along the way is very similar to what others have gone thru. Unfortunately, there is no widely available test for FM, so the dx~ing process follows the process of exclusion basis, as there are a number of other conditions that share a similar symptom range with FM, and once these have discounted, all that is left is the FM option, so we then get that card added to our collection.

The anti~ds your GP suggested to you may well be ones to help with pain and sleep issues, such as amitriptyline or nortriptyline. They are older~type anti~ds which, at lower doses, have been found to help with the sort of pain and sleep problems that FM drags along with it. For some they can be an effective treatment. There is lots of topics and posts about them, esp on the Treatments And Medications board, so maybe think about having a bit of read about them. There are both the good and not~so~good aspects about them to hopefully give you a balanced view to help with deciding what to do.

Anything that you want to know about, just ask away. With the experiences and info on here, there's a good chance we'll be able to point you in the right direction of something helpful :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Hi

Postby whoami » Sat Jan 04, 2014 1:49 pm

Monkeypirate, welcome.

As I read your post I heard the frustration and with every word felt the pain you are going through. Your story sounds so familiar.

Don't ever feel you can't let everything out here, you can. We all need to. We all understand.

We do have some men here so pretty soon they will come forward or you will find them.

Having a Dr understand is a huge help.

Take care.
[i][b]

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Re: Hi

Postby monkeypirate » Sat Jan 04, 2014 3:04 pm

Thanks for the Welcome and advice :-D

My gp did mention older type anti d's so I will have a read up.

It is helpful to know there are others going through the same thing.

One of the worst things about having this condition is that until now, nobody really seemed to understand and I keep feeling I have to justify everything I say or do.

My wife tries really hard to understand and be sympathetic, but sometimes I think even she gets sick of hearing me going on about it. As a concequence I end up trying to keep it all to myself.

It affects both of us as I just don't want to go out and socialise any more. If we do go out I get really uncomfortable very quickly, or I get really tired and just want to be home.

Thanks again both.
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Re: Hi

Postby FluppyPuffy » Sat Jan 04, 2014 8:29 pm

It's difficult for those who don't have FM to fully understand what it is like for us to deal with as there isn't anything we can use as a comparison that they will have experienced to get a better idea. There are a couple of things on here that do a good job of putting the message across if you wanted to get Mrs PirateMonkey to have a bit of a looky. This is One To Show The Non~Believers and this is The Spoon Therory.

You've no need to keep things to yourself now you've found us. Whatever it is that worrying you, hurting the most or just generally getting to you, there's a good chance someone else will have had a similar experience, and may have some suggestions for you about dealing with it and making yourself feel a little better.

The socialising situation affects pretty much all of us in a very similar way to what you experience. The way a lot of us handle it is by planning ahead. In the run up to the outing, taking things a little easier than we would usually do, and getting as much rest as we can forms the main part of the plan. Then, on the day of the socialising, taking time to get ready is the next step. This could involve a relaxing soak in the bath or an invigorating shower, carefully choosing what to wear as comfort is a large thing to consider. Wearing something uncomfortable is never a good idea, but with FM added into the mix, it can take on a whole new dimension due to the thoughts and feelings and reactions it can stir up in us.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Hi

Postby monkeypirate » Sun Jan 05, 2014 7:23 am

Thanks for that :-D
The one to show non believers could have been written by me. It's uncanny. Right down to the temperature thing. I sit there freezing when everyone else is taking their jumpers off and my fingers are like ice.

I had a really bad night last night, hence getting up at 5:30. I was awake every hour. I think it's my own fault. Mrs monkeypirate bought a box of dark chocs they were selling off at teskies and I thought I would have one. I should know by now I cannot have just one, I have to keep on until I feel almost sick.

What I eat has a huge impact on my symptoms. I know this yet I still couldn't stop eating one after another. I was supposed to be getting back to the diet again after Christmas. Well, back on the waggon today!

I have found if I stick to basics, cut out all processed food and just eat meat, fish, veg, salad and fruit my symptoms don't go away, but they become more manageable. I get away with taking maybe one anti-hystamine a week to stop itching instead of taking them every day. I don't get so bloated and my sleep isn't so disrupted.

I can't seem to tolerate gluten and any dairy products really effect my IBS. In October when they were testing me for celiacs I had to eat gluten products for 6 weeks and I put on a stone. My stomach looked like I had swallowed a football.

Obviously a binge tendancy together with depression and anxiety issues is a recipe for disaster as far as alcohol goes, so I am completely tee-total and have been for several years now.

This site has lots of useful and intersting stuff on it. I think I will have another browse!
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Re: Hi

Postby FluppyPuffy » Sun Jan 05, 2014 3:02 pm

There have been a few mentions about how removing gluten, wheat and dairy from diets has helped improve symptoms and how people feel. It's yet another area that needs fully researching to see if there is a definitive link, esp with us all being affected so differently by FM.

I should probably :nono: :nono: :nono: :nono: :nono: :nono: :nono: at you for not stopping eating the [chocolate] [chocolate] [chocolate] even tho you knew it would come back and make you pay for it...but...considering I can be just as bad and carry on eating something that I know is going to affect me, it would be a bit hypocritical. Maybe just try and learn from it, and stick to rationed amounts. I've not managed it yet, but there's always hope :lol: :lol: :lol: :lol: :lol: :lol:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: Hi

Postby denys » Sun Jan 05, 2014 4:20 pm

Hi and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave:
Denys

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Re: Hi

Postby thebryans » Sun Jan 05, 2014 8:11 pm

Hi Monkeypirate,

welcome to the fibro family,
its tough on us and our partners, family, friends, and a lot will never understand but thankgod on here we can vent our feelings and be understood by others, which is the best thing possible for us all, Just reading the posts knowing we are not a freak or mental makes life 1000% better for us, and male or female it does not matter, we are all one big family, this site and a few others on facebook have been a real crutch for me and kept me sane, lol me sane never, I hope you feel better now you are amoungst us,
all the best
loraine
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Re: Hi

Postby debsmith » Mon Jan 06, 2014 1:15 am

Hia monkeypirate

Fibro is awful! I'm glad I found this site too after my diagnosis haven't been on for a while had surgery new yrs eve :( and too sore to type! This is such a friendly fibro family I'm thankful all were there 4me too as 4 choccy I never used to like sweet stuff but now blimey! I do but must b in freezer 1st yumm! I like to have a little treat as having a few drinks I just can't tollerate it now welcome :-) :-) :welcome:
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Re: Hi

Postby monkeypirate » Mon Jan 06, 2014 8:43 am

Good morning and thanks evereyone for the welcome. :-D
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