How do you cope!

[Pfmfnmcg]

Recently diagnosed after a few years of feeling hellish. Slightly alarmed at the rapid decline as each month/quarter of the year passes. Struggling more than ever with day to day life and I just don't know what to do or how best to manage this condition. Help!

[Janet28]

Hi Pfmfnmcg and welcome to our wonderful forum ☺I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you & talking to others at different stages of their lives with Fibro & learning from their experiences.

It does help with the whole process & i wish I had found the site years ago. I have had Fibro for nearly 30 yrs & I'm still learning about it, like we all are.

I'm sorry you have been so unwell. Are you on medication ? Is it just Fibromyalgia you have ?.

Please do go and look at the Mother Site fmauk.org

Where you will find lots of useful information and links about fibromyalgia .

I have taken the liberty of locking your post for your own safety, or your information is open to the internet so we do advise you to lock them.

Peace, luv n light

Jan x

healthunlocked.com/fibromya...

[Pfmfnmcg in reply to Janet28]

Thank you so much Janet. I'm fighting against the tide and don't know where to start! I was prescribed amitryptyline (is that right?)but other than that I was shown the door...The impact on life is huge and I dont know what to do and how to manage things better as I used to be able to hide it quite well but with each passing day,that's becoming more of a challenge.

[Janet28 in reply to Pfmfnmcg]

That's ok my friend, yes Amitriptyline can really help, I've been taking them for many years. I also take Pregablin which also helps, Quinuine and Butrans Patches & Codeine Prn.

Have you been to a Rhuematologist or Pain Management ?

Even if you have, I would ask to be refered back because there is more that can be done to help. Maybe your GP is not that knowledgeable about Fibro, perhaps see if you can see another doctor.

I do wish you luck with it all and hope you can get the help you need.

Luv Jan x

[angiesmith50]

Hiya so sorry you have fibro but glad you have finally been given a diagnosis. Fibro is a life changing illness unfortunately. I went down hill quickly. Some people seem to develope symptoms over a period of years but they all seemed to come at once for me. Yeah I've been on amitriptyline for years and does help me sleep. I take pregablin, co drydamol and morphine for pain. I also use alot of heat too. Get yourself some good B12 vitamins and some magnesium oil spray. Fibro sufferers lack these. Vitamin D too. You need to give yourself time to take it in and come to terms with it. Also read as much info as possible and ask all your questions. There are alot of ways to make your life Easier and we all try a lot of different things and ways of coping Take care xx

[TheAuthor]

Hi Pfmfnmcg

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

I would personally go back and see a different doctor and talk about the possibilities of some referrals? Explain how you are feeling and what is happening for you? Maybe ask along the lines of Pain Management, Physiotherapy, Hydrotherapy or even Alternative Therapies (which many GP's will refer to these days?). Just see what they will afford to you?

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

All my hopes and dreams for you

Ken

[Hidden]

Let me put it this way, i don't cope. i just keep calm and carry on. until of course my body reminds me i have a chronic illness and then i'm stuck in bed! but i have some beading to do while i'm stuck in bed so i can keep my mind busy. ^_^ i find it helps to do something where it's not strenuous. i also do colouring in to help me distract myself and that helps.

it's a hard thing to cope with. but we all cope- together.

[Leonwp]

We dont know either, but as we learn we take encouragement from the ones in front of us that find the wobbly stepping stones and warn us but we must all remember to shout to the ones coming behind "i wouldnt put my foot there if i was you". If you read some of the posts that appear here everyday you will find there are a dozen answers to each question, i dont think i have ever seen a "wrong" andwer given yet.

[Pfmfnmcg]

Thank you all for taking the time out to reply. Its much appreciated and very kind! I just feel slightly panicked and terrified as to the road ahead...I am a million miles from the woman I used to be. I can't see my GP as I get the impression he's fed up with me but I will look into other alternative remedies. Thank you all once again.

Happy Monday 😊

P x

[Hidden in reply to Pfmfnmcg]

Why not swap GP practises, and start afresh? It’s important to have a good working relationship with your GP as they are the gateway to all your treatments. Give it a go!

[donnabrain]

the first thing you have to do is lower your standards

I used to panic about the things I didn't get done

I have learned instead to " congratulate" myself for whatever I do get done

[ErosisSore]

Hiya, I've been recently diagnosed too. Was just given Amtriptyline and Naproxen by the doctor before I was properly diagnosed by rheumatology. I find these make me very groggy though and have tried to make do without but sometimes I have to give in. My doctors said they do not offer anything else. I'm now finding that I'm getting less and less sleep every night now, only 2 hours last night, so it looks like I will have to take the Amitriptyline more. I can't believe how quick everything has set in, just over a year ago I was fit and rushing around, walking 2 miles every day with our dog then 4 to 6 mile cross country rambles at the weekend! Now I'm shattered after walking the kids to school! I have a family and partner who refuse to take any interest in what is happening to me, which doesn't help. When my joints allow it I do have hobbies in the form of arts and crafts which I enjoy and helps me to relax. I'm starting to learn now to just stop, take time out for myself as no matter what I try and accomplish I get no thanks for it anyway.

Take care

All the best

Jo x

[Hidden in reply to ErosisSore]

I’m slightly puzzled. You said take the Amitriptyline more. Do you mean up the dose? To work you must take it every night. Please see your GP and discuss your doseage.

[Flyby7]

Hi we all have different ailments I to get very down and tired some days you don't fell to bad other days I am really down I am different meds try seeing a specialist they to can help you

[1499]

Hiya! Im recently new to the site also. It is amazing how many of us have this awful condition "The invisible illness" I'm fairly new to getting help with medication as my fibro has escalated and I'm waiting on an appointment for the pain clinic where I hope they can get my fibro a bit more under control. It is hard especially during the flare-ups and like yourself it's a struggle a lot of the time and frustrating especially if you have been very active. It's great getting info on this site from other sufferers. My best friend is my hot water bottle at the moment. Everyone says pace yourself as the difficulty I have with being so houseproud is that on a good day I tend to overdo things and bring on a flare-up, so please dont do as I do and go easy. A fellow sufferer recommended pain patches to me on this site and off hand cant remember the name of them. I would prefer this to taking oral meds, and I certainly will mention at my appointment. I found some information and dont know if anyone out there has tried this as recently have had one of the worst flare-ups ever and for the first time what seems like IBS!!! "A fibro sufferer got off her medication she wrote and has virtually got rid of her fibro by following the Paleo diet" I have been reading up on this. She advised a physiotherapist told her one time" if you have fibro you shouldn't eat grains" !!! I hadn't heard of this before and it doesn't seem to be a diet as such just changing what you eat and she has lost over 4 stones and has still a bit to go yet. I dont need to do it to lose weight but would try anything as really found the tummy troubles hard to cope with. I was advised by a friend to try Gluten-free products first and see if that will help before I try the Paleo. Would be interested if anyone out there has tried either of these? thank you! I wish you well and hope you feel a bit better soon and know exactly what you are going through, take a day at a time! I get the monthly fibro UK magazine which has good information as well as the "Mother Site "and it's great to have people who will listen to my moans and groans lol! God Bless take care.

[Hidden in reply to 1499]

Go on YouTube. Tap in Sarah Myhill.

[Til65]

GPs will fill you with drugs because they don't know how else to help you. Pain medication can be great when you first go on it, but over a period of time can often stop working. If you don't have a good GP, you could end up with them stacking a whole load of different tablets. Personally, I have found they can bring as many problems as help.From someone trying to be gentle to herself and come off as many as I can, can I say there may be other things that help you cope that aren't invasive.

Heat works brilliantly for me. I use electric heat pads, a heated blanket/throw, microwaveable heat packs on a daily basis. Summer is much better than winter!

Meditation and deep relaxation exercises help me more than anything.

Accepting that your life may have changed considerably goes a long way to helping you work through things and find solutions. I have to use a wheelchair for anything but short walks, crutches for short walks when I'm not so stable - accepting that was the hardest. But they are aids the same as using pens with plumbers lagging so I can grip them better.

I'm slowly coming off Gabapentin (similar to Pregablin but cheaper for the GP) and trying to loose lbs that lovely drug has given me. The rest I want to come off once I've done this if I can. Fibro 'fog' is bad enough, chuck a load of drugs in that add to it isn't fun.

In my experience, GPs don't help much with that. Find out if you can get onto a Pain Management class in your area. Your GP maybe able to refer you, if not get a referral to a consultant who can get you onto one, or your local Pain team. Not only will you learn about pain and all it's ramifications, but you will meet other local people who live with chronic pain. That's worth it's weight in gold! You will also learn about pain medication which will empower you to discuss things with your medical professionals. Sleep, and all sorts. I really wish I'd been to one before the GP had prescribed my daily cocktail!

We all find our ways to cope and you will find yours. Pacing yourself, finding support and taking control for yourself will help you so much. You are the expert in your own pain, so make the decisions yours rather think your GP knows best - unless you are lucky to have a fab one.

Good luck and hope this advice may help.

[Jennyw59]

Hi and welcome! X It's a long road of trial and error in the most part - what works for some doesn't work for all. My mainstay is codeine - then that gives you terrible constipation! So have to take docusate sodium for that! I'm also on amitriptyline (again)which does help but I tried it a couple of years ago and it helped but then wore off after 3 months so came off it! And heat helps - I love the heated seats in my car! Learning to accept your illness is a big part of the disease. You cannot do what you did before so you either exhaust yourself trying or learn to not give a damn if the cleaning doesnt get done today! Don't plan too much. Don't worry if you pull out of engagements - theres always another day! Ask your GP if there is a persistent physical symptoms group you can go on. It's a psychological course to help you live as well as you can with this illness. Above all else be kind to yourself - you can't help how you feel and just because you can't see it or nobody knows what causes it doesn't mean it doesn't exist so you have every right to lay in and do nothing all day if you want as you are ill. Trying to get this over to spouses and relatives is often hardest of all because you cover for your mistakes at first - now's the time to be brutally honest with them and ask for help when you need it. Good luck stay positive and if you can't.....cone on here for a moan!❤😊😂

[Hidden]

Tap in Fibromyalgia and /or Chronic Fatigue Syndrome on YouTube and see how some people are finding things to help them. It’s a bit of a wade through, but well worth it. Go for the channels which have been set up by fellow suffers, rather than those with health care physicians talking. There’s some really good help out there.