As I age into my 50s, I feel more hopeless.

Status
Not open for further replies.
Joined
Jul 22, 2021
Messages
24
Reason
DX FIBRO
Diagnosis
01/1994
Country
US
Hi
I have spent most of my adult life fighting this dreaded condition without much relief and it feels like the years of wear and tear are taking a toll. I am
getting so stiff and sore and hurting just doing nothing that it is intolerable. Now my teeth are getting affected and I just slowly feel like any joy is slipping away.
What in the World has caused so many to get this darn condition? Sorry for venting. Just needed a place where maybe someone gets it. Tim
 
Hi
I have spent most of my adult life fighting this dreaded condition without much relief and it feels like the years of wear and tear are taking a toll. I am
getting so stiff and sore and hurting just doing nothing that it is intolerable. Now my teeth are getting affected and I just slowly feel like any joy is slipping away.
What in the World has caused so many to get this darn condition? Sorry for venting. Just needed a place where maybe someone gets it. Tim
I'm sorry you're feeling so battle worn, Tim. You definitely don't need to apologise for venting - we really do need that periodically. I also find myself asking sometimes why this is happening to so many people - stealing vitality for no good reason. But you're certainly not alone; there's a little bit of comfort in knowing that so many of us are in this together.

The teeth thing is a real insult added to injury, isn't it?! I hope you manage to find something that helps, and that any damage done is not too extensive.

The feeling that joy is slipping away is always a red flag that depression is taking hold, so perhaps explore what you might be able to do to tackle that specifically. This is a fight with many fronts - as I'm sure you know all too well - which can be overwhelming, but also means that we can at least approach it from a lot of different angles. I wish you every luck in finding some new form of relief in the not-too-distant future. In the meantime, feel free to vent whenever you want to 🌼
 
Thanks Jemima. Its so hard to wake up in pain, be in pain, try to sleep in pain. I never get one moment pain free. It is always there! I have a feeling this is some kind of immune reaction to an environmental toxin. Just my hunch. Thx 🙏 for reply!
 
Tim - thanks for being honest and venting. We all need a place to do that and it helps when there are people who actually understand. I’m just behind you at 47 with fibro, chronic fatigue and some other not welcome gifts that have caused me to deteriorate rapidly the past couple years. Keep going brother. Please vent any time. Jeff
 
Thanks Jemima. Its so hard to wake up in pain, be in pain, try to sleep in pain. I never get one moment pain free. It is always there! I have a feeling this is some kind of immune reaction to an environmental toxin.
Tim, have you come across the website Living Smarter With Fibromyalgia? The owner, Lisa, runs a clinic that focuses on fibro. She talks a lot about environmental toxins and Multiple Chemical Sensitivity (MCS) as a common co-condition of fibromyalgia. You might find some of her videos (mostly shared on facebook) and blogs on the topic interesting.
 
Thx Jeff. Anything in particular trigger yours? I have now dealt with this most of my adult life. I have dwindled to working part time in my own business because my body cannot get to somewhere on time everyday. There are days I am pretty much bed ridden on my computer laptop. Appreciate your reply. Hope you find some relief. Tim
 
Thanks Tim. I haven’t figured out all the triggers yet. It seems to be different every day. I work from home full-time since covid so I am also on my laptop either at my desk or bed. I have chronic fatigue syndrome as well so I’m in pain or overly fatigued or both most days. I’m in the processing of weaning off an anti-depressant because I can’t think clearly with it. I’ve tried 6-7 different meds over past few years but haven’t found the right cocktail yet. My body is overly sensitive to normal fibro medical treatments. Three things that have helped me most with fibro are yoga (started yin/gentle 6 months ago and had to get over being a man doing yoga), acupuncture every 2 weeks, and lots of magnesium.
 
Hi there...
I would be able to do quite a bit of work online, lying on or sitting next to my couch, but half of what I do - or used to do - actually needs intense face-to-face talk if possible, and transferring it to online work in the lockdown seemed less stress for me at first, but doubled work (30 instead of 15h/w) if I tried to do it 'properly'. So I've had to reduce it to about 20% of the 50h/w I used to do.

I've always "gotten up" out of bed & changed clothes, even when I was on sick leave for 10 months, to separate day and night and not decrease my sleep hygiene - using a couch in a different room. Doesn't it get an additional problem if you stay in bed? For me the best thing is gentle movements, with no pressure, so bed was actually not particularly good for me at all. Now I've got most of the pains down with pinpointing, alleviating, exercises and acupressure and my sleep up with passionflower, magnesium and esp. amino acids, bed is quite good - until I have to move :rolleyes:

Interesting thought to ask why it's so many that get fibro. That of course involves the many hypotheses about causes floating around, like CSS, AI, SFN, neuroendocrine, mitochondria/ATP... But I like the slant of looking at the big picture, incl. the history. There's a study from 2004 about "History of fibromyalgia: past to present" which reminds us that muscle pain has existed for centuries and used to be seen as a form of rheumatism. That rings true to me: If people felt bad and cdnt move, I don't think they or their docs/healers were able to pinpoint differences as analytically as we can today. And there were always so many people with rheumatism, first quotes from Ancient Greece. And today also: my wife for a few years now felt I had rheumatism, so sent me there, also the 1st rheum. thought I had A.S. (ankylosing spondylitis), and was disappointed when I didn't have anything. The fibro dx came 3 months later when I went for a 2nd opinion. I must say that I was reckoning with fibro, because I and my GPs'd heard about it a bit and thought that might fit, without really knowing what it entails... yet...

As to direct triggers of fibro, such as perhaps environmental toxins - mine might seem to be swine flu, probably not that environmental.
I'm someone who has reduced the contact with environmental toxins early on, nowadays 90% organic food & clothes, reduced fume intake from cars and home etc., for ecological reasons, but also realizing how hypersensitive my body is.
If the prevalence of stress and trauma in the lives of many fibromites is anything to go by, stress in our modern day life & work might be something contemporary, while trauma is ancient - since humans and their wars exist.
 
Last edited:
I have a feeling it's partly related to stress and genetics. My mother suffered her whole life with muscle pain while my father was very physically fit. I was a very active youngster but developed pain and fatigue as a teen following a stressful time in secondary school.

Keep your chin up Tim, it is demoralising getting more deconditioned as we grow older but we still may pride ourselves on living mindfully and not making things harder than they need be.

I've just turned 42 and have never felt this rough, it's worrying and maddening. The pain of old injuries has had a big impact on life. Hopefully the things I'm trying to come to terms are worthwhile. If you need to vent, better out than in. Atb
 
Hi Jay - I was diagnosed with ankylosing spondylitis. The orthopedic surgeon when asked if it could be fibromyalgia (I went researching like mad) said "no, that is what nervous housewives get". Just insane and it got worse. I waited 6 months to see a supposed genius with pain conditions and he had just gotten back from a cruise and told me I need to take a cruise. Ok, but I would guarantee I would still have this when I got back. I am rather sure mine was from lyme bite. I had the bullseye rash and everything but nobody knew what it was. It amazes me that all this time has passed and still nobody is sure what the heck is causing this stuff. I DO NOT think it is stress. Stress makes everything worse but it isn't the underlying issue here. Thanks for the reply.
 
"no, that is what nervous housewives get"
:oops: That is outright horrific!
he had just gotten back from a cruise and told me I need to take a cruise.
🤯 So is that!

I am rather sure mine was from lyme bite. I had the bullseye rash and everything but nobody knew what it was.
If you don't mind me asking: what country are you in, CancerSignFibro? I have heard time and time again that support for lyme disease in the UK is shockingly poor. A friend of mine had a really hard time with it - they refused to test for lyme and told her she had MS. Three years later and wheelchair bound, she found out it had been lyme all along. If you think that might be what you're dealing with - which sounds very plausible if you had the bullseye rash - then I'd keep chasing it. The earlier it's treated the better!

I'm so sorry you've had such horrendous responses from medical professionals. I wish you every luck in finding the support you need soon!
 
told me I need to take a cruise.
IDIOT. Sorry, I just had to say that. 😏 Unless it was a bad joke. Then only: idiot. Ah, or does he have AS plus "something else" - let's call it FM, and he was miracle cured by it... Then I'd've asked him for a cruise prescription plus a double money back guarantee if it doesn't work since...
Ok, but I would guarantee I would still have this when I got back.
... I would guarantee I would have much worse problems there and when I got back....
Just been away from home for 5 days. Just the change - maybe of air? - caused at least 3 whole days of increased pain, 2 there, 1 back.
Not as deadly as 2 weeks of rheum./fibro clinic for me...

OK, venting aside, putting a mediating cap on: It was probably well-meant, of course not serious serious, maybe trying to suggest thinking out of the box, i.e. out of living in a box. He is out of his depth, like most of them are out of their depth, like we are all out of our depth, thrown in the deep end and learning to swim in something unknown, trying to keep our head up... Sometimes we are overtaxed and feel the need to flail around berserkly, but the more we keep calm and get a clear head the more we can adapt, keep afloat, and learn to swim in the new environment or get back to a shallower part. In amusement rides (I've only managed a few ones for kids) I (would / used to) personally go into panic mode and grip onto everything for fear I'll be violently flung into space and (would / used to) end up a total wreck. "Luckily" I've been trained by pain all my life to pinpoint symptoms and trigger hunt, so FM came as a surprise but the adaption came quick, so any amusement ride is worse for me... Won't be trying again with FM, even now my last tests showed I've overcome my fear of heights pretty completely. Back to trying to keep as sane as we can: Getting back self-efficacy and self-confidence is in a circle with looking for and finding things that help, and unfortunately, most docs or pain experts can't, esp. no easy answers, and even if they can offer suggestions we need to try and try again, if possible every day, starting with baby steps, going thru lists of advice like sunkacola's and treatments, starting with easier ones and progressing to stranger ones, researching other experiences so we know what to expect and when to stop. And decide if we really need the med route, because starting that makes the other routes harder. (🆕)

BTW I/we haven't said anything about teeth problems yet: Interestingly my teeth also got worse parallel to fibro, but not caused by it. When the suspicion of Sjögren's came up, I realized I have a pretty dry mouth (cd also count as a symptom of fibro). That can definitely cause more tooth problems. Then all the symptoms & treatments long kept me very busy & distracted me from brushing my teeth, which my dentists understood, so we agreed to increase the tooth cleaning to 3x/y. Now adapted more to the new normal, I seem to be getting a grip on brushing teeth, so it's down to 2x/y again....
 
Thanks JayCS for your replies. It is really a tough condition. I don't know exactly what is going on but I think our immune systems are out of whack. I had oral surgery lately and the surgeon said it appeared my own body was attacking my mouth. I think it is autoimmune. Old vaccine injury? Could be.
 
Fibro has affected my teeth to .I’m nearly 50 and I get what your saying 💯.I also have a lot of times where I think what’s the point.and what lay ahead of me.many times I’ve thought is it the meds making me hurt as I’ve been on them so long ,fibro likes to keep u guessing.
Your laugh at this but I daydream when I’m down. I’m somewhere I wanna be .doing what I wanna do .and it helps for a while .I guess it’s a tape of meditation.and for 30 minutes I’m away from me .I’ve gotten pretty good and now pop in my mind places Sherlock Holmes fans will get that,and give myself a break from myself .
 
Status
Not open for further replies.
Back
Top