Not being diagnosed with fibromyalgia but would like to know yours experience

[Mypain67]

I like to know if is possible to live a happy life with this condition. I'm having a lot of pain and is been nearly a year now of very hard times tha affect family and friends

[Yassytina FMA UK Volunteer]

Hello, is there any suggestion to think you have Fibro? Some people have great difficulty living with this condition on a daily basis , for others it can be more manageable, you can hit times when have good periods and then again days when the condition can flare up , it can be unpredictable , some people have kept a diary/notes of symptoms and then seen their GP . Have you seen your GP lately ? sorry too read of your pain and yes it’s very hard for our family and friends too witness someone they care for suffering .

[Dizzytwo Moderator]

Hi, may I suggest you take your time and read through some of the many posts our members have posted over the years. Over 65,000 posts and replies many thousands sharing with us about their personal experience of living with fibro. I am sure you will find it helpful. Take care and I hope you have a good day.

Momo

[Hazel_Angelstar Administrator FMA UK Staff]

Hi Difficult to answer your question, because everyone is so different in how they experience fibromyalgia and how well they manage it

For me personally - I would say yes as I now have what is (for me) a fairly normal life which includes working part time, enjoying hobbies and interests, time with family etc. But there has also been times in the past where I was just existing from one day to the next and struggling to cope

[Dinkie]

Fibro is different for all of us and what one may suffer from symptom wise is not always what somebody else will suffer. Likewise meds etc, what works for one may not work for another. It's very much trial and error. Some take prescription meds but for me the side effects are too much so I have to rely on other pain relief and ways of coping.For me processed foods are a definite no-no. Tens machine, biofreeze gel, hot water bottles, trips when I can afford it to the chiropractor and hypnotherapist. Gentle walks help but most of all learning the art of pacing oneself. On better days I have learned not to run around like a person possessed but to do a little of the outstanding chores and then rest.

You may find that a one off visit to one of the fibro clinics would help. I went to the one in Guys and St Thomas's hospital. Saw lots of specialists, all of whom put their heads together and came up with a plan of action which was then sent to my GP.

When I was first diagnosed I was told to embrace PMA (positive mental attitude) look for things you can do rather than things you can't. It's a bit like playing the glad game if you have ever read the book Pollyanna you will know what I am talking about. Yes I have some down days like everyone else but in the main I keep a sense of humour (many of the folk on here ) I and my bestie on here mattoid-mags enjoy jokes and banter.

I have given up competing with my dogs, I can't run or even walk any distance but I'm still involved, I steward for judges at shows and that way I keep meeting up with friends and fellow canine enthusiasts. I can and do work, with reasonable adjustments in place. So on the whole I think I can still live a good life, it might not be the one I had planned but life is never a straight road. I'm forever saying "well that didn't go as planned" but who wants a totally predictable life😁

Do hope you find some relief soon as Momo says have a look at some of the previous posts. At least on here we are well supported and understood.

[Blearyeyed in reply to Dinkie]

Great reply Dinkie and very inspiring . Our Fibro life is what we make it and you are perfect proof that we can still enjoy things we love within our comfort zone when we find the right balance of pacing and adaption. Take care ,,Bee

[shaws]

I am sorry you believe you may have fibromyalgia and for some doctors they may be unaware if the clinical symptoms are not high.

I hope the fioillowing link may be helpful and it is by a doctor/research scientist (now deceased) and he was an expert on the condition and he prescribed his patients T3 (liothyronine).

UnfortunatelyDr Lowe had a bad fall that caused his demise and is missed by his patients.

The link ibelow from Dr John Lowe (Researcher/scientist) who died through an accident but the information on the following link may be veryhelpful.

I hope it is helpful as many people relieved their symptoms following his guidelines.

drlowe.com/thyroidscience/c...

[Blearyeyed]

I'm sorry you are at that point when Pain is taking over.If it is getting to the point that it's effecting your quality of life and relationships with others it's definitely time for your GP to listen and refer you to a Pain Clinic or Neurologist or Rheumatology for a proper assessment and diagnose if this Fibro , something else , or Fibro and something else , which can often happen.

The GP can do the blood tests to rule out any other issues or x-rays before you see a specialist.

Take the advice of our great Admin and volunteer helpers. Keep a diary and give yourself a Pain score each day . Try and work out if it gets worse by doing certain things and then avoid that activity or adapt it . It's good to also note if you have " tender" spots all the time , and if you also get other symptoms regularly that may not seem to be connected to the pain , as we can get a very varied group of Autonomic Nerve symptoms with long term pain.

Things like Fatigue , disturbed sleep , Headache or Migraine, poor temperature control, dizziness , mood swings , digestive issues , skin flushing , itching and sweating are pretty common with Fibro.

Even before getting a diagnosis for Fibro or any other pain issue you can start making Self Care changes that can reduce the pain and bring some quality of life back.

Pacing yourself is key , just as Dinkie says , working out what you can do consistently each day and working within that comfort zone creating a balance of activity and rest that works for you. There is no point in trying to keep pushing yourself to keep doing what is expected of you , or you expect you should be able to do trying to keep up with everyone else as it just makes the pain worse , like a horrible vicious circle.

Finally , Honesty with yourself and others is the best first step. Explain in simple , honest but positive words that you are struggling and need a bit of support and practical help. Let people know that you need to slow things down a bit , need help with more physical chores and that the pain means you might not be able to throw yourself into preparation and organisation, and might need to cancel things last minute now and then when the pain flares. Explain you are seeing the GP to get help and a referral and may have Fibro or something else and until you get your diagnosis and find the right help for you , you will need to pace yourself more.

This honesty helps everyone and takes the struggle out of what you are going through , for you , but for others as well. If people know what you can manage they stop trying to push you to do more . Your children , if you have them , can and will be helpful picking stuff up or doing little chores. Partners learn that they need to do more practical domestic duties to help make it possible for you to consistently take part in life each day. Friends and others , well the good ones not the Fairweather ones , happily help ease your burden because they know you have an issue so they don't push for you to go out more , offer to do school runs and lifts , understand if you can't return in kind with a dinner or a play date.

Most importantly, both you and others don't secretly worry about what is going on , adding to the stress and having everyone feeling more irritable and reacting to things negatively because of that worry and fear.

And Stress reduction just like pacing is essential to reducing the flares in pain.

You can get there , even if you have a variety of health issues , when you accept that you need to change your activity and adapt how much you do . You can't run around like a headless chicken like the majority of people , but then again it's not really good for pain free people either. You learn early on you are still You , it's just what You can do that changes and that quality of life is more important than the quantity of stuff we try to push into it.

I hope you get help soon , but do post as often as you need to get tips on getting that diagnosis and self care , as Dizzy says look through old posts too , or just to share how you are feeling with people whom understand what you are going through. Take care , Bee

[SlothMode]

Hiya Mypain,

Yes it is possible to live a happy life with fibro. It just takes a little time to adjust, acceptance that the old u has gone n a positive attitude. U need to pace yourself, break tasks down n treat yourself now n then. I've had fibro since 2012, fibro robbed me of so much but I was determined to keep my happy sunny personality. I hope u have told your Dr about all your symptoms as people can self diagnose fibro when there are so many other conditions which are very similar. My Dr ran a lot of tests to rule out everything else before I was finally diagnosed with fibromyalgia. Good luck n gentle hugs 😊🤗

[travishatesfibro]

Short answer: YES! I say that having severe fibro plus liver disease etc. It took me 3 years after my diagnoses to realize I could still live. I can't do much but I can do some things. Once I started to accept my limitations and started learning to listen to my body I slowly started doing better at life. I am still learning more about my fibro everyday but there are times when I see my wife or interact with my kids that i am truly happy.