Fibromyalgia Getting Worse

[Fibroguy66]

Although they say & state that fibromyalgia is not a progressive illness etc,do you think 🤔 that fibromyalgia does get worse etc ? In my own personal opinion I think it does (Admin Note I'm talking about my own pain here as a individual)

[Golfer15]

Hi Fibroguy66, in my experience it has got worse.

The fatigue is the worse symptom for me and that has definitely got worse. I have given up work and driving. I have given up hobbies, such as golf as i dont have the energy. I just have to take life slowly.

[Fibroguy66 in reply to Golfer15]

My fibromyalgia has definitely broken 💔 me.Pure 24/7 pain with no remission whatsoever.

Been private & done the NHS to with no results etc.

Pain & neuro blockers definitely not working anymore etc 😔.

Definitely feel zonked tired & definitely on the fatigue issues.

More should be done about Fibromyalgia but I'm told it's so complicated & hard to pinpoint it's causes

[Al10 in reply to Fibroguy66]

I worry that we use drugs to get us back to functioning again but haven't addressed the underlying issue because we don't understand what it is. (if only our bodies came with a handy manual, hey?) Functioning, means we will be tempted to go back to doing what we were doing, not trying to figure how we got here. Our bodies are begging for us to figure what they are trying to say.

Modern medicine is happy to cover up symptoms rather than figure what those horrid symptoms are saying.

If you are tired of being like this, you could take a risk. Go into a little meditation and ask your body what has upset it. What does it need? It might surprise you and it is no less daft than taking drugs that blatantly are not working.

Oh and if you are like me and find meditating while you are in pain irritating, don't worry. Don't fret that the pain seems worse as you try to relax. Just let it be. breathe, give your body permission to relax but don't impose that it must. Go through the motions giving yourself space and time just to be. Perhaps this time is just being with the pain? Stopping yourself from evading it. Exploring your emotions over it perhaps?

If you could stop yourself telling your body how to be and accept it how it is, broken, it may help? Can you love yourself broken? Have compassion for your body struggling to get you through the day? Having got yourself there, you can ask. What's wrong? What do you need? How can I help us?

Ugh, I'm supposed to write this with gentle hugs or something but.. Oh dear, I just can't. Could you take this offering as nice that I tried to care even if it's... I don't know? Probably annoying and too.. whatever? Not trying to teach you to suck eggs, but when you are low and feeling lost, I think a nudge to remind you can help.

[E3178 in reply to Al10]

I am reading a very interesting book by Miranda Hart who has struggled for years with chronic fatique and other symptoms triggered by a tic bite when young. I am finding it very helpful. It is changing my mind set about how you need to accept your illness before you can deal with it.It isn't a doom and gloom read and has moments of humour.

'I haven't been entirely honest with you' by Miranda Hart.

I hope this may help someone.

[Al10 in reply to E3178]

Sounds interesting. And given Miranda is a comedian, I imagine she can make even the dark times humorous and engaging.

I think celebrities are rather like us; Human. Just they may have a little more dosh to throw at their problems. They insist on getting their answers where most of us lesser mortals end up potless before we are getting anywhere near close. Hurrah for those individuals sharing their knowledge!

Acceptance is a wonderful thing but hard to do. Society teaches us to strive and fight; Be strong. It sees acceptance as akin to giving up, which it isn't or doesn't have to be.

Before we accept, we can be like Don Quixote, ever tilting at windmills and the like, oblivious to how we are wasting our energy and how windmills may be good? Making Electricity these days or grinding organic flour for our bread.

I think so many fibros wont accept their reality that they need to rest, slow down, take time out, reassess, until they are forced to by their bodies giving up. It's weak to take time off, isn't it? If your career or job isn't fulfilling or you hate it, you can't just give it up and do over. You have commitments, mortgage, kids and for many, that education was expensive; You still have the loans to prove it! How do you dare accept you are on the wrong path? (Not just jobs of course. Anything can be out of kilter.)

Funny how no-one asks how do you dare to fight yourself; Your body that is screaming at you to reassess, do a U-turn... Or else!! But they will blame you for being poorly, unable to work etc. They will tell you you're not trying. They will say, get busy, you will soon forget about it and mostly, I think we do. We forget so hard we can't remember how we got poorly. I find the chatterers have a lot to say but a lot of it is unhealthy mean, not worth listening to, esp if your heart, soul and being are telling a different story.

[Hisue in reply to Fibroguy66]

Have you asked about LDN? It is available by Rx in the USA.

[SilverWhistle54]

I agree, I've had fibro now for 6yrs and I've found that like a battery I've had to use my energy carefully. The pain gets so bad i can't move and want it to stop even tho i know it won't, the lack of energy i find frustrating, and as the longer i have it the worst its getting, to the point I'm still driving but worry about the pain levels mean the increase in pain meds.

[jackiesj in reply to SilverWhistle54]

SilverWhistle 54 thank you..i get it now that you say its like a battery. Im on an app that is teaching about self care...i had to ask what that meant!

[Al10]

I think there is no reason for it to get worse but obviously for a lot of people it does, particularly with age.

However, in reality, there are lots of reasons why fibro will seem to get worse. It's because the pain is there for a reason and we, in our ignorance are not doing what is needed to fix it.

Poor sleep= poor healing. How many of us take extra time to rest and recuperate after exertion? How many go straight back to work and do over hard physical labour and then complain their pains are getting worse? That could be due to getting little quality restorative sleep.

Working through pain makes you move awkwardly, more likely to injure yourself. Poor sleep after injury means that damage too, will heal slowly or inadequately. Then are we going to do over? Even being careful, doing more damage?

Perhaps we are tempted to do less? And so when we exert ourselves because we have to, we are less fit. Our core is less strong. No core, more likelihood we will damage ourselves. Remember, with Fibro, they signature is, they can find nothing wrong? Over time, we will likely do actual damage to our backs of whatever? So now we have fibro and...!

Lets add in a jippy tum tum that fails to deliver all our nutrients to keep us fit and heal our bodies each day.

Lets add in the stress of holding down a job while we are struggling in pain. With IBS. With Headaches, exhaustion... Do we ask for more time off? Upset co-workers by shirking the harder work? Risk being got rid of in lean times?

How about adding in home stresses? Too tired to enjoy home life. Too exhausted to do your share of the chores. Too trashed to cook healthily for yourself; Or at all?

All these things add to fibro getting worse. Feel free to add in more.

Fibro shouldn't be progressive, but living in this busy world means for many or even most, it will be; Unless you take extra care.

[Cat00]

I would say my fibromyalgia is managed better than before. I'm like you in the sense I don't have flares, my pain muddles on, shifting around the body but I've found that as long as I exercise regularly I can replace the fibro muscle aches with exercise related ones which I cope with better mentally. It also helps my sleep. I find my other conditions bother me more than fibro. I think what Al10 writes is very true. If we reject exercise we get weaker and weaker, our organs and joints are not supported by muscle and ligaments, which can lead to more pain. A sedentary lifestyle is bad for our mental health and our metabolism, our spine, our bowel.

Getting progressively weaker is bad for us but I don't think fibromyalgia is progressive personally.

[Puddywoods]

I 💯 agree it does.

[Nelly1]

mine has definitely got worse over the last 10 years but having said that it could be all the other problems I have been diagnosed with since having fibromyalgia.

[Mille21]

Mine has definitely worsened I keep thinking I'm having a flare up but it never eases its really depressing xx

[Fibroguy66 in reply to Mille21]

Definitely feel you on this one.Everyday just feels the same over & over.

Fibromyalgia is a medical living curse.

[catherine19611]

yes it does get worse, I was diagnosed in 2002, it stayed at that level for a couple of years then started very slowly getting worse for about 10 years, after that it got worse in stages, it would be the same for months or even years then it would flare up and not go away, then it repeated this for several years getting slightly worse each time. then came COVID, I never had COVID but I did have the vaccine, and oh my God what a mistake that was, I was left only being able to do about 10 minutes a day of normal daily activity and I now have severe chronic fatigue which has never got any better since the vaccine and is getting worse, today that is now about 1/2 an hour of normal daily activity and not all in one go, a few minutes here and a few minutes there. I am lucky if I get 2 good days a week and I can go several weeks without any good days at all.

when I was first diagnosed and up until 2008 I could work full-time, towards 2008 I could struggle to get through the day and when I went home, I got into my car left leg ok, but my right leg I had to put my hands around my thigh and lift my leg into the car, I couldn't lift it in any other way. the pain has got a lot worse as well, I saw a consultant at the end of June last year who said that there is nothing that they can do or give me that I haven't already tried, so I basically just have to get on with it

[Sanctuary19]

I truly feel my flares are more often

ESP after covid …

I’ve tried acupuncture and it’s lowered the flares

Hugely

Hope this helps

[Hisue]

You may want to look into LDN (low dose naltrexone) for fibromyalgia.

[Donnacomeaux1956 in reply to Hisue]

I will check in to it. Thank you

[Chance_chance]

Yes I find mine has got worse over the last 6 years I can no longer work or enjoy hobby I previously did. I know a lot of people who feel the same.

[Alit69]

I have fibro & omg the pain someday is horrendous, I'm in constant pain somewhere on my body everyday, but the odd day is more bearable, if & when I can walk I have to walk with aids due to legs giving way, but have also been diagnosed with chronic fatigue syndrome, have arthritis in both knees, it's nice to be on a forum where I can speak to people who can actually relate to what I'm going through & me to sympathise & understand them, my social life is non existence now & has been for few years as people don't understand u can't always go out,it's hard to plan anything! Love to u all xxx

[fibo]

Hi Yes definitely I started with the pain 26yrs ago and worked on for 10 years but then I started finding that the pain was getting worse more parts of my body and my feet was so painful I couldn't stand so I had to give up work. I'd had enough so fatigued as well I'd work one day, the next day in bed. after resting quite a lot I felt better that as soon as I tried to do anything I was back to square one. I've gone for using the stitch to Walker to a manual wheelchair and onto a powered chair I'm not sure I'm living anymore I only leave the house once or twice a week and apart from that I'm lied around all day every couple of months my children remind me to move a bit more and so I try and it lasts for a few days and then I crash so yes to your question definitely worse and worse take care.

[jackiesj]

Fibroguy66 what an excellant question. i think as we get older or life changes...our body reacts differntly also including fibro. As i get older does i"it" get older and have different needs. i now learn with my stuff i need a nap....lighter routine or changed routine. I hate to say things get worse...i go with different but in the dark pain..its worse. does that make sense? best wishes.