Fibromyalgia

[Manu2015]

I've had fibromyalgia now for 5 years can anyone else who has this help me deal with it

[Hidden]

All you can do is deal with it as we all do , I rub a lot of cream in my mussals at night and take my medication I find wearing flip flops helps ans elasticated stockings on my legs Two hot water bottles at night on my legs

[Manu2015 in reply to Hidden]

Thanks for the advice erona4

[lou1065]

Hello, you have come to the right place for help and understanding, have a look around the fibromyalgia site, also look at other posts and replies, I learn a lot of coping strategies that way. Someone will come along with more advice than I can give but stick with us. Lou xx

[BlueMermaid3]

Hi Manu

Is there anything in particular that you need help with?

If you could give me some specific questions I could try to answer them for you or point you in the right direction.

It is impossible to cover everything in one go as Fibromyalgia is a very complex illness and there is not a 'one size fits all' answer.

Lu xx

[Manu2015 in reply to BlueMermaid3]

I just want to know how to change my mindset so the fibromyalgia aint that bad cos thinking about it seens to make it wrose

[Hollytree in reply to Manu2015]

This is sooo true.

I try and keep busy doing anything or reading if not up to doing or watch a good film. Anything to take your mind off it. But do keep hopeful- there are good days and one thing you do learn is patience and to plan ahead. No rushing around at the last minute to do things.

Don't think about what you can't do, think about what you can do. What are you good at? What do you enjoy?

Don't worry about trivial things- eg housework not done. It doesn't matter- it isn't life threatening. Focus on the important things in life- the really important things - family and friends.

[Manu2015 in reply to Hollytree]

Hello hollytree thanks for your advice you've been so helpful

[Regnofibro1]

40+ years for me. All I can say is one day at a time. One problem at a time. A good support system. Good doctors. Stay as positive as you can. Do what you can when you can. Ask questions and demand answers. Mope cry and throw a fit if nothing else. Get over the fit and learn from everything and everyone. Then on to the next day. Repeat if necessary daily if needed. Oh yes you can and probably will go through many emotions in one day. Reach out anytime you need or just want to. Good luck and feel free to contact me or anyone in this group (they are really nice here)!

[Malwimmy27]

Hi , it's a horrible illness to deal with as you're already finding out. I have found that certain types of medication work for a while then your body builds up a tolerance. Sometimes it requires a mixture of medication, creams and very gentle exercise. I think a good thing for you to do is to read through some of the different topics and pick things out that sound appealing to you, along with your gp's agreement. I have tried various types of medication over the years, I am now taking pregabalin 300mg twice a day dihydrocodeine 120mg twice a day and paracetamol up to four times a day. In the past I have tried fentanyl patches and buprenorphine patches, I found tram adolescent ok for about a year until my body developed a tolerance to it. I find that I've had to change meds every few months. Everyone on here will all have their own way of coping with it. I also use creams and gels.

I really hope you find this site helpful. Sorry for the essay! 😕😊

Becky x

[Manu2015 in reply to Malwimmy27]

Hello malwimmy27 the tablets im on here always seened to work but i came off there for a month cos i through i was ok nw but no nw im bk on same tablets there taking a while to work again

[Regnofibro1 in reply to Malwimmy27]

Yep my body also builds up a tolerance to meds. I too am taking 300mg but I also take Cymbalta (I don't know generic name)and muscle relaxers. I also take shots in back once a month. Many of us have multiple things wrong with us. I have found its a guessing game trying to find meds that work for each of us.

[TheAuthor]

Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you are struggling and suffering so much with your Fibro, and I sincerely hope that you can find the answers that you so desperately desire and deserve.

You could discuss other medication options with your GP to see what else is available for you? Or possibly ask for some referrals to Pain Management Clinic, Physiotherapy and Rheumatology? Something like this could be a good start?

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[maggi999]

Hi Manu,

this is a reply I've just posted to Tracy -

Take control of your own destiny and ask your GP for a referral to the pain clinic.

Unless your GP has had lots of experience of treating Fibromyalgia, the pain clinic is the best place to go to get advice on medication.

Take notes while you have your consultation cos you'll never remember it all!

See if the pain clinic can offer you a pain management course - my hospital calls it an 'Energy for Life' course, other hospitals may have different names for it but they will all offered a similar curriculum.

My course is one morning a week for 6 weeks and I'm on week 5.

They cover:

-the acute pain/chronic pain cycle

-how to pace yourself

-graded activity

-medication options

-relaxation methods

-setback/relapse prevention

-acceptance and self-management etc.

Once you start to feel 'less hopeless' about this illness, you will feel more in control.

You will also meet other people who are in the same boat as you, to a lesser or greater extent and it really does help to know that you are not alone.

Off course, it should go without saying that you have made a brilliant step forward by coming onto this website - you'll start to feel that the other fibromites are real fibro-mates as well, as they are so supportive and loving!

Hugs and best wishes, Maggie xx

[Manu2015 in reply to maggi999]

Thanks maggi999 for the advice my doc is gd with knowing about fibo but hes not told me about any groups i can go to or courses and thats what i want nw