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Fibromyalgia

katieivy
katieivy
11 Replies

hi I am new to this page and I have some questions going on in my head I was wondering if anyone is able to help me x

I have just been told I have fibromyalgia I am wondering if im going to be able t d the activities that I am currently doing I am a beaver scout leader so I enjoy my walking fire building camping archery canoeing kayaking horse back riding etc pretty much all outdoor activities I have always had joint issues since one year old however the pain is getting to much for example I went into town yesterday and I really struggled walking due to the pain im getting constant pain in my back, hips, legs and arms and a intense tingling sensation in my legs and arms and hands.

I also have a two year old little girl and her touching me and leaning on me to stand up is getting to pain full. I feel like such a failure and im scared I will end up in a wheel chair unable to stand and her not able to remember me as a walking playing mummy.

I also suffer with joint hypemobility, depression and social anxiety if any of you have any information or any personal experiences that may help and help me get to terms with this pain or any type of physical exercise that you found help with the pain please could you message me im so sorry for the long post I have been in tears about this that my life is slipping away and I carnt do anything to stop it thanks in advance

11 Replies
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cherryripe21

I am sorry to hear this. May I ask you if you qaree taking any other meds. For example benzodiazepines?

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cherryripe21

are

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katieivy

hi im on matizapine for my depression but im also taking just iver the counter pain killers and ibuprofen x

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rosewine

I was extremely active before having fibro diagnosed but I am afraid I had to give up nearly everything and get the pain under a bit of control before slowly introducing more gentle activities. Most people with fibro can't stand any activity that puts too much strain on the joints and muscles and most of yours unfortunately do. Many members find gentle swimming, stretching, walking on softer surfaces, yoga etc are beneficial but anything too strenous is a no. Each of us of course are different and what one member can tolerate another can't. It could be that you might need different medication or additional medication to bring your pain levels down and get your mobility up. I found Pregablin helped with the shooting, burning pains and also brought the muscle and joint pain down to a more acceptable level. I am also on cocodamal and ibuprophen as I do have osteoarthritis as well. I asked to see a physio who gave me exercises that built up my core strength again and also this helped with my walking and any stretching movements. personally I found CoEnzyme Q10 seemed to help bring the muscle pain down a bit but not everyone benefits.

Have you had tests for Vitamin D and magnesium deficiency as both those can add to fibro symptoms. Hope some of this helps.x

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cherryripe21

Co codamol is very addictive.

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rosewine

I'm one of the lucky ones as I can reduce down several tablets with very little ill effect but would never stop them abruptly as that can be dangerous but would slowly reduce but you are correct in some people it can be very addictive, it is the same with other drugs such as Tramadol and Butran patches and stronger opiates such as Morphine. I accepted having it initially because my pain was extreme and decided I wanted some kind of of my life. I also care for my husband who has depression, diabetes and epilepsy and is now suffering from cancer so I have to somehow carry on and to be honest without the help of my medication I would be either lying in bed or just sitting in a chair so I felt I had very little choice. If someone is in less pain or who has an easier life can do without them that is a good choice. I was just stating what I was on personally not advocating any particular medication for that person as that has to be a personal choice taken with their doctor's advice. Sometimes it is a balancing act between what we would prefer to do which in my case would be not to be on any medication at all or fulfilling responsibilities which means I have to take them to do this.x

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cherryripe21

Sorry to hear this. I understand.

1 like
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25rosclare

Hi Katieivy.

Sorry that the news has left you so devastated. When I was diagnosed I felt that my life, as I had known it, had died and I cried for all the things that I thought I would never be able to do.

The worst thing that you can do is give up all of your activities. There are days when you will really struggle - but there is always a way around it. If you give up the active side of your life then Fibro will win and cause you more pain, stiffness and deep depression.

Get a good doctor that will listen to you and help to try and alleviate your symptoms and find you the best medication and treatment. There are a lot of combinations so don't accept 'this isn't too bad'. No med or combination will take away all of the problems but aim for the best for you.

Find a good friend who is there for you when you despair, who will listen when you want to rave and cry and give you a hug to show they care.

Life is a war and Fibro is one of the battles but try and focus on what you need to do and use your energy for that.

Good luck - there will be bad times but I am sure you will get through them xx

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Jenonnet

Hi katieivy, sorry you have had the fibromyalgia diagnosis but it isn't the end of the world, it can be managed.

When I got my diagnosis I was so pleased and relieved because I had been fighting these symptoms for years while the docs kept putting them down to my age, my underactive Thyroid, because I've had children, etc, anything they could think of, when I knew there was something else causing all these symptoms. So when I finally got referred to the rheumatologist after insisting on tests and he diagnosed fibro, I was so relieved and pleased to finally know what it was. I finally had a name for my symptoms and could deal with it from there.

A lot depends on your attitude. If you're determined to see it as just another thing in life you have to deal with, you'll be fine.

Pacing yourself works the best to help keep down the flare ups. You no longer have the amount of energy you did have, so don't expect to be able to do as much all at once as you used to do, but you still can do some of it at one time.

Getting the best meds for you is important because they will help you function better.

I'm on Pregabalin twice a day and Tramadol for times a day as well as Paracetamol with them.

You need to see your doc and try some meds usually prescribed for fibro until you find some that work.

I haven't found any yet that take all the pain away, but they help to get it down to a level I can manage, so that helps me to do the things I need to during the day.

Everyone is different and so are the meds that will work for you. I can't take any of the group of meds that include amitriptyline, but others swear by them. You have to find your own combination. This will take time but will be worth it in the end.

Listen to your body, don't push yourself further than it's telling you. Pace yourself in what you do, don't rush anymore, take things slower and steadier, that way you'll realise better when you've done enough and it's time to stop. If you push yourself and do more than you should you'll cause a flare up and will be in a lot of pain and probably in bed for days. So pushing yourself is counter productive.

Gentle exercise and walks are good as they keep your joints and muscles working, but again, don't do too much.

You'll find your own way of coping and dealing with the pain in time. Fibro isn't the end of your life as you know it, you just have to learn to manage it. Good luck 🍀. Sending love and gentle hugs. ((❤))

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Mdaisy
MdaisyAdministrator

Welcome to FMAUK Community katieivy ! :)

Hope you've been finding your way around the site OK and I see you've had a few replies from our lovely members. I think it's all about finding the right balance for you regarding exercise, pacing and rest - trying not to get caught in the push & crash cycle that people can fall into so easily. Fibromyalgia it seems is best managed using many different approaches together including relaxation, CBT, medication, complementary therapies, stress reduction, pacing etc.Please do also check out the website fmauk.org for further information that may be of help to you.

As a newbie I notice your post is not locked to this community only, it will generate more replies if you remember to do this as most members prefer to answer locked posts. Here's a link about how to lock posts if you would like to do so;

healthunlocked.com/fibromya...

I hope you find this to be a supportive online network full of people who understand as we live with Fibro too.

All the best

Emma :)

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