Tips for coping with fibromyalgia.

[Kelyoung75]

Hi , my name is Kelly and I was diagnosed with having fibromyalgia back in June of this year I am finding it very difficult to except and to cope with the pain and the medication's I have been prescribed are not helping.

[Hidden]

Hi

What meds are you on if you don't mind me asking? Xx

[Kelyoung75 in reply to Hidden]

My doctor as put me on 900 mg of gavabentam and a 100 mg of mitizpine a antidepressant of a night time and co codramol throughout the day and none of this works xx

[Blobby3 in reply to Kelyoung75]

Hi, I hope you are managing.

Fibro /m.e. are horrible diseases.

Everyone has such a different types of body issues /symptoms . some people need lower doses of meds others higher. So many types of medications!

The headphones and meditation overnight helps my mind help a little.

The gentle beginners yoga stretching on utube ill try when I can to stop my muscles getting weak.

You will discover what non medicine things help soon I hope.. mines an electric blanket and audio for everything.

My husband is a saint with me, he is and has always been an active sportsman. We are like chalk and cheese.

My children are all grown and leading their own lives now.

It's hard not to be feeling guilty when we have children and grandchildren too.

we want to be the same best person we always were before fibromyalgia moved in

... I think there's a type of grieving for the old you, there was for me. I still cry about this on bad days.

Mine started when our 5 kids were from 5 years upwards. Children are very perceptive and will accept they have quality time with you doing things you are able to do together that don't wipe you out and leave you flaring up.

It's a journey that's for sure, don't suffer in silence or be afraid of accepting help from all corners of your life.. if you are offered!

I found mirtazapine to affect my mental health badly and I literally put on 2 dress sizes in 2 weeks, it made me crazy. Gabapentin I had in high doses and I spent so much time asleep.. then I dropped to very low dose after years on it and it worked aswell for me. I found prozac fluoxetine in the middle dose really helped my low mood. I did CBT and it changed my way of thinking for the better, pace pace pace no boom and bust... plan as best you can.

Dont be beating yourself up or putting yourself down... congratulate yourself each day for 1 achievable thing. If I've brushed my teeth and hair I'm high fiving myself... anymore and I'm having a superb day !

This site is full of lovely people and I've always read through here and found hope.

💞

[Hidden]

It takes time to accept everything fibro throws at you and all the different aspects of it.

It seems to take time to find the right meds that work for each person, too. Keep on at your GP to help you and look at other ways to relieve pain. You could try a tens machine ( mine was £20 from Lloyds pharmacy) Hot baths with Epsom salts, gels and creams, patches such as Salonpas, heat pads, electric blankets are some of the things I use. I reckon if each thing can help 5-10% of the pain, then if I use a few together I can notice a reduction in pain.

I also use hypnosis. Never use at work or in the car, but look at YouTube and just search hypnosis for pain. I tried a “ whole body anaesthetic” hypno and it worked.

[Kelyoung75 in reply to Hidden]

Thank you so much for your help I will try all of this brilliant advice and let you know how I get on xx

[Fra22-57]

Am afraid mine got worse before levelled but that's to do with medication given.I am lucky having a partner who helps me and kind of understands the disease.I would advise not trying to do too much when you have a better day as it sets you back days.always makes me so ill.

[Kelyoung75 in reply to Fra22-57]

Thank you so much I will take all of your advice on board xx

[Rita1404]

Hi Kelly it might be your meds need tweaked so don't be afraid to go and discuss with GP,

What helped me was adapting and adjusting i.e i used to be very active and felt I was depriving the kids if not been able to go out so now we sit play cards board games etc and it's just as fun.

Once you get meds under control than hopefully it will get easier

I also take alternative meds and try and watch my diet which can help also

take care

[Kelyoung75]

Thank you Rita that's how I feel I have three daughters the youngest is seven and I was also very active and I feel so guilty on them and angry that I can't do what I use to do xx

[dinkic]

I have had it for over 15 years and at times I admit to not coping well. I think you need to find what meds suit you, its a bit of a lottery and at times you have to decide if you want to have some pain and a life as some meds space you out to the point you are not with it or never achieve anything.

Its early days for you and my advice is listen to your body, you have to pace and at times this might mean doing very little for a few days to enable you to do something you really enjoy and making sure you work in recovery time.

At first it sounded like a sentence to me but you do learn to live with it. Having people who understand and support you is the most import

ant thing. Try to make sure they realise what the illness is so they do not think you are being anti-social or lazy. Sometimes I just want time on my own to scream at the injustice of it or have a cry.

We all hope in time that new ways of dealing with it come along. Try yoga, meditation any of the things others have tried and you may come across something that really helps you.

With me it is a warm relaxing bath. Doing some craftwork etc all help take my mind of the pain etc. You will find your thing, but give yourself time.

Hope thing helps

[Hidden]

Hi

Hope you see some improvement soon. I take oramorph, zomorph, duloxetine , nortriptyline, paracetamol-half dose and cuprofen-1-2tablets. These take the edge off it but nothing seems to work that well. I have an electric massager which is good plus my trusty hot water bottle 😄 love and hugs Lynne xxxx

[Kelyoung75 in reply to Hidden]

Hi Lynne, I am going to mention the medication you are on to my doctor and I am going to try a tens machine and the hot baths and I love my hot water bottle and heat pads thank you for all your kind words of advice xx

[Hidden in reply to Kelyoung75]

You are very welcome. Pm me anytime of day or night, I will leave my phone on, I'm usually awake anyway cos of pain. I get 1hour or less sleep per night cos of pain. I try to get the odd half hour during the afternoon if can. Love and hugs Lynne xxxx

[Kelyoung75]

Thank you Lynne that means a lot xx

[Midori]

Sorry you have had to join the club nobody wants to be a member of!

It is hard to accept, and you are still at the start of your journey. For most of us it does get, if not easier, at least the new 'normal'.

It is going to be difficult, adjusting to this, but try to go with it until you feel more sure of how your body is acting, and how various medications work for you, and you may have to try quite a few! There are many side effects with meds, but don't give up, and come here often, as we will all give you support to the best of our abilities, but we aren't doctors, so we don't have all the answers!

Try to keep up a moderate amount of exercise, it may hurt a bit but it will get easier. Swimming in a warm water pool can be good. Warmth helps with the muscle aches and stiffness.

Try not to dwell on the negative side of things; it is easy to get depressed.

Cheers, Midori

[Kelyoung75]

Thank you so much for your very kind message I am taking every day at a time and I have found this site to be most helpful and full of very kind hearted people who unfortunately understand what I am going through I am thinking positive and staying focused on trying to find what suits me best thank god for this site it's a blessing xx