Just had Diagnosis: No idea what to do... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just had Diagnosis

Hairyhippo profile image
10 Replies

No idea what to do now. Are my symptoms real or imagined?

How can I sleep at night and be tired all day?

Physio says I just got to walk more! can't even get my shoes on some mornings.

Where do I start?

Doctor has given me Amitriptyline which seems to help some nights/days but not others.

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Hairyhippo profile image
Hairyhippo
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10 Replies
Jan810 profile image
Jan810

Hi hungry hippo,

Here is the link to the mother site which has lots of information about fibromyalgia

fmauk.org/

Please be assured that your symptoms are real and that you are not imagining them. Each and everyone of us suffer differently with symptoms and some have other illnesses also.

Fatigue can be extremely soul destroying in itself but it's all about learning to pace yourself now. Try not to overwork yourself or get stressed as it will tend to exacerbate your symptoms.

You have come to a great place to chat and meet new people who have the same illness as yourself. Everyone is very friendly and someone should be able to help you with any questions you may have.

I hope your having a good day. Jan. X

TheAuthor profile image
TheAuthor

Hi Hairyhippo

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. As Janet28 says, your symptoms are all real my friend. If the Amitriptyline is making your fatigue worse you could always talk to your doctor about its sister drug, Nortriptyline which does not contain the sedative component?

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Hairyhippo profile image
Hairyhippo in reply toTheAuthor

Thanks for the welcome.

TheAuthor profile image
TheAuthor in reply toHairyhippo

Good luck my friend.

carol789 profile image
carol789

Hi hairy hippo 😀. I'm sorry you have this horrid fibromyalgia.

I'm with you there, I often think it's in my mind as that's what most people say. I can't understand when people say get more exercise when we are in pain.

I know we have to exercise but be gentle and build up slow. I do a little - and I mean little at home in front room, gentle whatever I can do. But I count my housework as exercise now! I do walk my dog twice a day too, used to be 45 mins this time last year, but now I'm slowly working my way back up to 15. But usually need lie down after. (I Let hubby walk him third time when he gets home from work).

I've heard swimming is good x. But I would have to go somewhere water and changing area was warm.

I couldn't get on with amitriptyline, so on Sertraline and Gabapentin. I am glad it is helping you, hopefully as it gets into your system it will help you more.

Very best wishes to you.

Carol x

Hartleyhare2 profile image
Hartleyhare2

Hello HH,

No your not going mad, welcome to the wonderful world of Fibromygelia my friend! Don't be in a hurry, your not going anywhere and your fibro isn't either.

Whilst fibro is not curable many of the symptoms can be eased. So a good start may be listing your symptoms and yes it can be a long strange list. Then you can start to plan how to get some relief. You are never going to get rid of them but you can certainly make life easier. It may be prescription, homeopathic, physio, CBT, diet, physical aids or a change in lifestyle or work, if working is an option, for me it is not.

The members on here have huge knowledge to tap into, specific questions are usually best and get most replies. There is also the archived posts to use as a Reference source and last but by no means least the wonderful admins.

Each of us is unique and the illness affects us differently. But some symptoms we all relate to like widespread pain and exhaustion. Build up a bank of what might help keep those that work for you, let the others go. There are no quick fixes or one size fits all solutions. Just ask about specific problems.

Good luck on your journey

Patrick

Shazzzy profile image
Shazzzy

Hi hairy hippo, great name ! Just a quick reply, what time do you take your amitriptyline? It is best taken at about 6 pm as the drowsy effects will last into the next day if taken later in the evening. Also, there is another med called nortriptyline which is similar but doesn't make you so tired the following day. Fibromyalgia is of course exhausting but amitriptyline can make this worse. And your symptoms are genuine, research into fibro is ongoing .All the best

Hey Hairy hippo welcome to our friendly Fibro forum you won't regret it.

When I was first diagnosed I was so relieved as I thought my legs were seizing up when walking my dog - I then found this brill forum where I was supported greatly and I too - like yourself wondered if I was dreaming cos when you read what others go through on here - but I have found out there are different levels of this horrible affliction and if you are like myself then thank your lucky stars as I do.

I was given amytriptalene I take 30mgs around 7pm and find I am not as sleepy through the day now - as I do sleep most nights - perhaps you need to increase your amytriptalene- the GP told me I could increase mine until I felt it was working for me.

I walk the dog too and thank goodness no more feeling like legs are seizing up I feel this helps keep the joints and muscles going and the housework plus once weather pucks up I will be mowing the grass and gardening.

The secret is don't give into it if you can help it.

Are your feet swollen through Fibro do you think? As it could possibly be water retention - go and see your GP again and ask them about this.

Hope this has helped you - take care 😀😀

Hairyhippo profile image
Hairyhippo in reply to

Thanks. Someone else suggested I take the pills earlier will definitely try that, tonight. Will also try increasing how many I take. Only managed about a five minute walk with the dog today hips and thighs and big toes, really painful.

in reply toHairyhippo

Yeah you will learn quite a lot from peeps on here - you will get back to walking your dog - think positive hun - if you've not walked dog for a bit you are bound to be painful - there are days when my knees hurt - my back hurts but I won't give into it because once you do - it's the slippery slope and I know it's only going to be for that day. Keep your chin up and fight it as best you can. Wish you well 😁😁

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