What advice can you give someone at the beginning of being diagnosed with fibromyalgia ?

[J-a-w]

I have just been diagnosed last week and wondered if anyone wish they had been told/advised at the beginning what would that be be it medicines to try/avoid, useful activities, alternative therapies etc.

[beauty_geek13]

I have been diagnosed 18 months and its been hard at times. I find a mixture of heat pads, supports and gentle exercise works for me but everyones different. I use aquafit as my exercise as its in water its easier to do. Its. COMBINATION of zumba and water aerobics. Xxx

[J-a-w in reply to beauty_geek13]

Thank you for your reply, I'm thinking swimming might be right for me, need to loose some weight too so will look into aqua aerobics x

[anemona]

Hi J-a-w,

I can understand your need to know more about your newly diagnosed condition. This is a complex condition which requires a very well understanding of what is it and how is like living with it. I greatly encourage you to become an expert patient and get more control of your symptoms & treatments and their impact on your daily life.

You can find valuable information on your query on the Fibro Action Association- see the link below. The last FAQ on the Pinned Questions by the Admin of the Forum is worth reading as it provides extremely useful information to support people with Fibromyalgia understand and manage their condition better:

fibroaction.org/Pages/learn...

another useful source to check is the site of the National Fibromyalgia Research Association, Oregon :

nfra.net/nfra-resource.htm

I hope you could find time and patience to find more about your condition. My advice is to be pro-active and cautious about what information you come across on fibro & related aspects. Check, whenever possible, if the source of information is reliable and trusted, and be careful when receiving personal opinions/suggestions from people living with this condition as manifestation of symptoms and responses to treatment might differ from person to person. My recommendation is to keep an eye open on evidence-based information and credentials of people when searching for support & information.

Wish you all the best on your journey of living well with this condition and become more empowered to manage its symptoms. Please feel free to ask for support whenever you are in need.

Take care,

A.

[J-a-w in reply to anemona]

Thank you, I will look at the links x

[TheAuthor]

Hi J-a-w

I sincerely hope that you are feeling as well as you possibly can be today? I would like to offer you a very warm welcome to the forum, and I genuinely hope that you find it as useful as I do? I would like to say how sorry I am that you have this horrid illness also.

I have pasted below a couple of links for you to read that will explain all about your illness and medications. The real issue with medications is that we are all individuals and we all react differently to our illness and our medications so it is not really possible to say one drug is better than another.

nhs.uk/conditions/fibromyal...

fibroaction.org

I think you will discover it is a case of try and see what medications work best for you. I want to wish you all the best of luck and I look forward to bumping into you around the forum.

All my hopes and dreams for you

Ken

[J-a-w in reply to TheAuthor]

Thanks ken x

[aura2]

Welcome J.A.W.

Good Advice above. I would like to add take the list of symptoms and deal with each on separately. Also keep an dairy of all appointments and outings and make sure you leave a space between each one to rest .

[maryharrison]

Hi I've had Fibro since last March. The best advise I've been given is pace yourself that is if there's a job you need to do just do a little bit then sit down for a while, then do a bit more and then rest a bit more, and so on. It's the same if you are going out try not to have two or three appointment on the same day as the next day you will be on your back. Find someone or something you can have a good laugh with as laughter is good to release those endorphins in your body xx hugs

[J-a-w in reply to maryharrison]

Yes I am finding that out. My body and mind somedays are some what slower than I'd like. It's v frustrating x

[Lolis]

I think this is the hard thing about Fibromyalgia, we all present differently. Unfortunately that means no one can tell you what you personally will face. I write this as if I was giving myself advice way back at the beginning of this journey I would say:

Stay positive, really nurture your self esteem as well as your body, always look for the silver lining. There is always someone worse off than yourself. Be kind to others.

Really try to find an understanding GP & develop a good working relationship with them. If you get dismissed or treated like a malingerer - then move on, find another GP. If you ever have anything to do with the DWP/benefits system - Write everything down, keep paper work, take friends/witnesses with you.

Grieve. Grieve for the life before FM. I can't stress this enough. Things can't be the same now. I can't tell you what will happen in your future but the way things were has changed. It may not be forever but you have to accept what has happened and actively embrace life & the hold on the good things. Be kind to yourself.

I don't know if this will help you, I don't think the 16 year old me would have known what to do with it but I do wish you well. Know that the people here understand what you are dealing with & will help you if they can.

Take care xxxxxxx

[J-a-w in reply to Lolis]

Thanks for your support x

[ingart in reply to Lolis]

Lolis has nailed it on the head with her advice. As a sufferer of this condition for over 20 years I can't stress how important it is to have a good understanding G.P. Even recently I found Fibro still has a stigma attached to it by some of the older GP's! Definitely change doctors if you need to!

[Hidden]

The one thing I would recommend is not to go straight onto any strong meds and to take HIGH doses of vitamin D - the body gets rid of it if you take too much so no harm can be done and it has been shown to be very successful in alleviating symptoms - I have been taking about 400mg daily as a supplement and a locum GP recommended up to 4,000mg as that may bring even more relief - I read research which suggested that kind of level for people with joint problems. You can get a good vitD & C combined on Amazon and its a higher dose than the NHS will probably prescribe. x

[Mdaisy in reply to Hidden]

Hello All,

Please note Vitamin D Toxicity is possible, see link;

patient.co.uk/doctor/Hyperv...

and more information can be found here too.

nhs.uk/Conditions/vitamins-...

Hope this helps

Emma

FibroAction Administrator

[Hidden in reply to Mdaisy]

Hi, Yes, the locum GP informed me incorrectly!

[J-a-w]

Thank you, blood results for vit d not back yet but were down few months ago. Had rubbish nights sleep for past few nights and find this makes for a rubbish day that follows. Is this typical?

[karmadogma]

Afte 20 years i have. Learned that food and stress are my worst enemy. I gave up all processed food. Anything boxrd, canned or precooked is bad. Raw and fermented are your best bet. Even just walking helps.. pain meds help some but sleep is best. Look into yoga for exersize and breathing techniques for help relaxing and falling asleep. Keep track of your pain daily. I use an app called ( catch my pain) its free, plus they have a group attached to it. Support groups. Are. Very important, i am in 4 of them daily on facebook. Hope i helped you some. ((Hugs))

[J-a-w in reply to karmadogma]

Hi there, thank you for your advice. I think I am going to buy a note pad and jot down foods and pain daily. I will defiantly get the app. V helpful thanks x

[mitziblue]

So sorry for you luck;( I know your pain. It's possible that your family doctor can give you the medicine to help the pain and discomfort. If not ask to be sent to a pain clinic. I know with me I started out with my family doctor and all was bearable for awhile. When it gets beyond that point though you'll need to see a pain specialist. Fibro has many stages I believe, and only gets worse as the years pass. If you are able to exercise it does help. I'm now not able to. I have phantom pains like stinging and biting in the summer as if bugs are biting my legs, or bee stinging them. Also my skin gets tiny red patches that are like blisters. Then last year I started having inflammation in my right eye. It seems it's a steamroller I'm constantly trying to keep ahead of. Hope you find some relief sweetheart! xxxx Mitzi

[J-a-w in reply to mitziblue]

Thank you and I hope you are having good days of late x

[karmadogma]

Itwould be wise to download (mood tracker) to keep track of how stress (good and bad) effects your days also. Try keeping track of the food and beverages you have every day, it may show you which foods aggravate your fibro. If you have (I.b.s.) you need to take that into consideration as lots of fibromites have that problem. Migraine and other headachs are another big issue to kep track of if you get them. Good luck im on Facebook and pintrist if you want to look me up.

[ingart]

I would stress please do not get bogged down worrying about moods, monitoring pains, stress and diaries - Only keep a short diary for a week or two if you have to ( ie for dhs etc or if a specialist asks you to) speaking as someone with a great deal of experience with this condition you will be setting yourself up for more bad days than good. If you are newly diagnosed it takes a long time to learn your limitations ( sometimes you might decide it might be worth going beyond them to suffer for a while if its something you really want to do and I wouldn't suggest that attitude until your symptoms have settled down) - only you can make those decisions then Learn to pace yourself and rest in between. (a bit like an old lady) Try not to think of yourself as always ill- on bad days just put it behind you and make the most of the good days (within limits!) Good luck

[J-a-w]

Thank you ingart. I am trying to keep it at the back of my mind rather than the front, this makes me feel more normal somehow,! Today I look worse than I feel for some reason, I can live avoiding mirrors. I'm experimenting cutting out certain drinks and foods this week and see if it helps or not with the energy levels. That's the hardest thing I'm finding at the moment.