5years +

[Pastafox]

Has any had fibromyalgia over 5yrs and does level out or has it got worse Thanks for your time people...

[honeybug]

hi Pastafox ☺️🌿🌸🦋

So sorry for your suffering…I empathize with most of your conditions.

I’m EJ. I’m 73 now and I’ve had FM for 50+ years

Because you are male and most members are females I’m concerned that our sexes will make a difference in our FM journeys as well as that we are all uniquely created our journeys are unique unto each individual with certain similarities.

In my situation at the onset of my FM my first big symptom was weakness/fatigue I was always blessed with a tremendous amount of strength and stamina.

After returning from Germany back to the USA I noticed that I was having such attacks of weakness that I’d have to drop to the floor to rest after doing mundane activities. This kept occurring until I sought a diagnosis and at first it was chronic fatigue syndrome

My bouts of fatigue and weakness and widespread pain progressed until I sought another answer and received my severe FM diagnosis (Sorry I’ve lost the ability to put periods at the end of sentences…don’t know why)

In my case my FM got so bad that I’m now mostly in my wheeledchair with only a short window of ability to do much

I also now have 70 comorbidities + 3 pending These conditions overlap by sharing symptoms. So if you have other conditions they could also cause same symptoms as your FM which makes deciphering which condition is flaring up or which one is worse difficult

You are much younger than I am. This has a promising outlook for your future I’m no longer able to exercise and be active which is imperative to your health and well being.

With FM every patient has to learn to pace themselves and not overdo which leads to setbacks. So I would say never push yourself beyond your capacity in the moment. Be sure to rest completely and start again for bigger tasks.

Alwsys try to avoid stressors as much as possible. When it comes to family; there’s only so much avoidance one can do. I have been blessed/cursed in some opinions with the most dysfunctional and crazy family. I’ve always felt like a badminton birdie that keeps being hit but never gets to land/rest.

I now have survived 2 loved ones who have passed and dealing with a95 yo bind PTSD OCD anxiety depression disorder plus vengeful dad. So he now goes bonkers over even the smallest challenges; which in his youth and sighted days back then would never affect him this way. As I’ve said we can’t avoid family stress but try to not let it get to you as much as possible.

We can only deal with things one day at a time. Try to control what you can each day. Don’t focus on the future of FM just concentrate on the here and now and make the best of each day and coping will be much better.

I hope this is helpful to you. Fill free to ask me questions I’m always willing to help where I can.

Best wishes take care

Love and prayers.

EJ 😊🤗♥️🥰🙏🕊🌿🌸🦋

[Pastafox in reply to honeybug]

Thanks honeybug I was told by my gp it won't get worse but lately I have been have very time of it do you feel your mood reflects on how you feel Thanks for your time God bless ...

[honeybug in reply to Pastafox]

I’m sorry you’re having a hard go of it.

Yes when our mood is low It does make our symptoms worse.

Our brains control the body and when we are stressed by our emotions this certainly does affect/affect our conditions and our FM too.

When I go through my depression times I truly have more symptoms and during the flares makes it harder to cope and especially if grieving it really makes my pain increase.

I forgot to mention sleep. How’s your sleep??? Mine has progressed to very little and not well with any. Be sure to maintain as healthy a sleep routine as possible. This is key to every function in our body.

Something most people don’t know is that for every day we lose of sleep it takes our body’3 days to recover. My sleep deprivation is so compounded that multiple lifetimes couldn’t make up for it now. If you start having sleepless spells try to find the answer why asap and address the problem so you don’t get deprived. We need our sleep to renew cells and keep our body functioning as close to normal as possible.

If you suffer from more low moods than normal get some help for it as soon as you can. Nothing wrong with treating our minds when they need it… it’s wrong for us to be labeled with a stigma about depression or any health problem. Whatever the problem is wherever it occurs when it’s ill it needs treatment.

Always be proud of who you are; you are wonderfully and beautifully created…never let anyone tell you otherwise and believe that.

Clinical depression runs in my family and my beloved brother suffered so much with it. He had great difficulty trying to rise above the cruel words of judgement others imposed upon him. I worked with him for 26+ years to help him hear that he was all the wonderful things he was created to be and being treated for all of his comorbidities was perfectly fine. Didn’t matter what others think or say. Stay true to yourself and deflect others opinions.

Hope this helps some.

Thank you for listening my new friend.

Be kind to yourself you deserve it.

Hugs and prayers.

EJ 🤗🙏🕊

oops…God bless you abundantly. 🤗😊

[Pastafox]

My sleeping is very poor has been for years worse the past few years am sick of trying to get my point across my head gets stuck in a very dark place and can become either scared , angry, emotional or very tired the past few weeks I have been displaying all I lay awake Ruminating unable to focus on much nothing sticks spinning like washing machine containing large hard lumps

My Anxiety is getting worse at night

I spend most days Feeling depressed all the time and Anxious most the this can switch without warning

Thanks honeybug

[honeybug in reply to Pastafox]

ohhhh…I just found your reply…confused why my cell didn’t alert me of your answer…apologies for the snafu.

OMGOODNESS Pastafox 😱

Imsoooo very sorry about your insomnia and all you’re enduring due to pain. I empathize with you as I know that dark time very well. My pain+ insomnia I dubbed painsomnia has been going on too long. I recall those times being so miserable that nothing helped.

I have listened to a CD during the night/bedtime of calming noises. There is an advert on tele over here that a site called Calm where you can choose between white green brown pink noise that hums. I believe it would help me if I could sleep in my bed ( I’ve slept in my wheeledchair for 10 years now due to my Ehlers Danlos and fibro pain plus skeletal dislocations laying on the bed.

You can try using diffusers with lavender essential oil for calming affect. Avoid using blue yellow or white window coverings and bed coverings as they will cause sleep disturbances due to the colors of waking hours.

Try taking Epsom salts warm bath soaks for 15 -20 minutes to relax soothes aches and pains.

Try a relaxing activity to help distract your mind when able. Once you get better you can rely on which one or all of the aids to help in your flares.

Hope these help.

Love and prayers.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

[Jacksono]

Sorry to hear this. I have just said a similar thing. The literature on fibromyalgia and the GPS say it's not progressive, but since being diagnosed nearly 10 years ago, the last two years I've got worse and had to give up work and driving. To me that's progressive.

Also, as the years go on, other symptoms start appearing, making things even more difficult.

Honeybug is right. You have to learn to listen to your body, pace yourself and accept that you have a chronic illness and won't be able to do all the things you could, without giving up on life completely. It's a very fine balancing act and I'm only just starting to get it xx

[Yassytina FMA UK Volunteer]

Me personally I seem too get better periods and then weeks of not feeling so great, the hot weather was a nitemare for me this year as well. I keep trying the pacing method always, just reminding myself have a break or how ever many stops I need in a day and this does vary , normally the previous days activity can be hard the next day, just walking (not so far yesterday and being out has triggered off pain today 😫) I personally have never read that it cannot get worse, for some it does, age I’m guessing could be a factor as our bodies will pick up wear and tear and having other health conditions as well .

[saxcat]

Absolutely gets worse

[Carlt]

About 8 years diagnosed but probably over 20 years since it started.

Sometimes it feels like it's getting worse and sometimes it feels like it stays the same.

It depends on the flare ups and their intensity.

The constant background pain doesn't seem to have got worse but that might just be because I manage it better.

I think coming to terms with it as (for now) it is a lifelong condition that we just have to work around has helped.

Stoicism has also helped a lot too.

[SpotX]

I think I have learned to manage it better so I have fewer flares although I am in one now. That is because I didn’t pace or listen to my body when it needed to rest.

I do think mood can impact on levels of pain. Acceptance that I have this condition and learning to manage it rather than searching for causes/cures has really helped me.

Also exercising when I am able to is helping improve my mobility and pain levels which in turn means I’m going longer between flares.

Best of luck in finding what works for you.

[Briecheese]

Since 1985 and I am now 78. Worst time was 1997 to 1999 when I was bed bound and more or less house bound. Knowing when to rest is good and listening to your body but often demands of family and extended family can really affect you. Do not push yourself too hard. My pains always kick in worse 2 - 4 days after I have done too much. Ration what you have to do. I have also had to be carer for others during this time which drained me.

[Flowerinbloom]

I have probably had it for 20+ years although was only diagnosed around 3 years ago and it has definitely got worse we’re even the simplest tasks wacked me out.

I was told from the orthopaedic consultant that fibromyalgia has different stages so it can get worse , being on here everyone is different and also seems to have a different diagnosis and outlook.

Unfortunately we just have to keep going on not knowing what the next day brings and I have found that it takes being strong mentally to actually deal with this disease.

[Wobblygirl]

My fibro has got worse as costochondritis pain is now added to the mix! It hurts to even breathe+it makes me scream out loud! No idea why this has developed???I take painkillers at these times, always pace my living and walk most days; even though it's getting shorter!!!

I manage because I sleep better when in pain and buy in all sorts of additional support. I try+keep in contact with friends and v occasionally meet folk face2face...

It's a v different life from years ago but as condition has deteriorated I realise I must put myself first! I am learning that it's almost a full time job to put yrself first with the need to plan resting, eating, errands, walking etc.

I am still learning...

Avoiding stress and being too busy is a must!

I hope you find a way through this, it's not easy but I have asked 4 support here+folk r v good at answering queries and being so kind...

Look aftr yrself. You r v important! Wx

[Phanerzoic]

35 years and counting unfortunately, but you just have to adapt and learn do's and don'ts as your body pain fluctuates. Listen to your body and not what others want from you or expect you to be.

[KraziekLou]

Hi, I’m so sorry to read of your difficulties with sleep and depression.

I was diagnosed nearly 5 years ago and yes in my experience it’s got worse. Honestly you are the expert in Fibromyalgia sadly not health professionals. Unless you have Fibromyalgia then you really don’t understand it.

At the moment due to the weather changing I’m in pain.

I take Amitriptyline to sleep and if I’m lucky I get a full nights sleep (as long as I’m not under any stress) maybe twice a week, otherwise I’m awake on and off through out the night. Pregablin just and only sometimes takes the edge off.

Have you tried mindfulness meditation and or some light exercises. Such as a walk. You do have to pace yourself and do what you can when you can. Good luck

[Linny3]

I had fibro. for about six years. It did wane for about ten years and I wasn’t troubled by it. Just recently I have been told it looks to be back. I am very achey and tired. My mornings are very achey and I am not sleeping well once again. Hopefully this second time around won’t last as long as the first time.

Good luck

[choirbird]

Had it for 28 years, got better to start with because I spent a lot of time in bed but as the years have gone on I've attracted multiple other disabling conditions and illnesses. Other people may improve, I know some people improve with ME as time goes on but not with Fibro. Sorry for that.