I thought Fibro was an issue that came and went. I’m not very educated about it, but i thought i would have good days and bad days....I only seem to have bad days and worse days.
Hi I thought the same but more bad than gd.
I have just started a pain management course it helps alot to understand and deal with it but yes you get bad days and worse days seems to be the factor for us all.
At the moment, yes.
I have been managing it for a few yes. I'm 71. Recently it is very bad.
I am able to manage each day care full but at moment almost bedbound. I believe it comes and goes.
Hope this helps you to.look forward to some painfree time.
I was diagnosed about 8 months ago, I have pain 24/7.I'm still trying to figure this out.
If you dont change your lifestyle you will only have bad days. Stress, exercise, mental strain and more affect your condition. It changes though and depending on your lifestyle can become bearable. I started out having severe muscle spams and great fatigue that kept me in bed most of the time. Now I can do things but get tired and sore fast but I can at least do things. For me its about reserving energy for when I need it and limiting stress and uneeded chores(like eating prepared meals vrs cooking).
Hi Mark, I too have just had bad days!! I was diagnosed in Dec last year but have had the constant pain and stiffness for approx 8 months. Unbearable some days where you are in tears with the pain. You are not alone in this battle against fibromyalgia. So glad this forum is available as you start to think you're going mad with the strange symptoms that go with the pain such as a feeling as if you've burnt your skin, feeling as if cold water is being poured on your legs it's all so strange.
You are not alone. I have been diagnosed to have fibromyalgia about ten years ago (but I still could not believe this result now). I have weak and sore muscles symmetrically over the entire body almost every day. It makes me to felt extreme fatigue. The most of time I have not be able to handle daily regular activities. It drove me into a deep depression; from time to time I thought that I really do not want to live like this way. But I'm still here.
Hi mark
First off YES men can get fibromyalgia and second every body is different. Some people have a mild case of fibromyalgia and some like me have a very severe case which keeps me in pain and fatigued 24/7 . I wake with pain and fall asleep with it. Now I don’t know what you have tried physical therapy ,acupuncture,trigger point injections,timeric which a natural herb 🌿 to take or meds . Unfortunately this is what we deal with. I just wanted to let you know that you are not alone and keep coming to this site. And be encouraged big hugs 🤗 to you.
I have read about many, many drugs prescribed for the pain and depression but I’ve also read the Marijuana is effective at treating allot at once successfully. Anyone here had success with it?
Unfortunately FMS is a painful condition that comes to visit and decides to stay a lifetime. It goes from tolerable pain one day to intolerable pain the next. Pain with FMS changes from one day to the next (just that fast) and with no understandable explanation. I thought at first it had to do to the previous day's activities but now I realize the inconsistency in that theory. .And exercise is important to us FMS suffering pain patients as conditions can get worse without it. But exercise causes pain in FMS patient;s; often lasting days after say just pulling a few weeds.
I truly hate telling you that if you have FMS you will have to deal with pain daily for rest of your life. It did help me understand my pain by keeping a diary of activities, stress, emotional upsets etc etc daily then going back to see if pain was more or less connected to the previous day on consistent basis. And if stress did more than pulling weeds or if emotional upset hit harder than stress or activity..... but still we want to live normally. If I pick up my 26 lb dog I can have severe pain that night and going into next day but then again the pain won't be worse than before I picked up the dog. And I figure I cheated FMS out of a bad day.
But other than the diary the only suggestion I can give is work daily to keep a positive attitude and try to keep depressions at bay. And don't blame every pain on FMS! Keep in touch with your doctor to make sure something else hasn't developed. Such as not all chest pain is FMS it could be heart pain. And don't let the doctor's blame everything on FMS as that's a good way for them to get by with "lazy" behavior. Good fortune and prayers to fellow FMS sufferer.
Thank you Nancy, there were many encouraging and helpful points in your message.
Prayer helps me out of bed Every morning too.
Blessings
P.
Hi mark65624, ive had fibro for about 5 years. I've found firstly you need an amazing doc. I broke my back 6 years ago which then I went onto develop fibromyalgia. My doctor has me on gabepentin to stop the nerve receptors sending pain message to my brain. Baclofen to stop the muscle spasms and then you're usual paracetamol and tramadol. It does seem like I'm taking a cocktail everyday but the result has been that I've been able to hold down my 12hr a week job and live a relatively "normal" life. It's very difficult with fibro as the pain along with my disability means the pain is 24/7 and as has already been said everyone is different and reacts differently to medications and therapies.
I have found a wonderful woman on the internet she does cocolime fitness. She has fibromyalgia but is also a personal trainer so she knows exactly what we go through. She's so positive and does some lovely stretches (unfortunately that's all I can do) but she does a lot of very very low impact workouts if you feel you can do. I know not everyone can do it.
If I can help anyone or encourage anyone I'd love to try and help. At the end of the day the only ones who understand how fibro feels are the ones that struggle with it day in day out.
Hi Mark,
Sorry to disappoint but unfortunately fibro Illness does not come and go 😞 wish it did.
I’m 33 years old and iv had fibro for 3 years now. I am in pain every single day. The “good days” I have shooting pains in my legs, arms that come and go, along with a dull pain in my shoulders and back.
On my bad days “Flare up” I have extreme pain in every inch of my body and it’s random weird pain sensations no 2 pains are the same. From shocks, shooting, stabbing, dull aching pains in my whole body. The fatigue is terrible and frustrating.
The difference between my good and bad days is that on my “good” days I can deal with the pain and get on with things. My “bad” days I’m in tears and no matter what I can’t do a single thing only go to bed. My bad days can last days. I’m going through a flare for 6 days now and I had to get a cert for the week off work.
I would advise you to find a balance (which takes months even years) to help you deal with your illness rather than trying to find a cure because, unfortunately to us there is no such thing as a cure. Therefore we need to get to know our bodies and our limitations and try to listen to our bodies when it’s telling you to slow down or stop.
Most importantly look after your mental health because if you don’t you won’t cope with this illness. Trust me this illness tries to take over every bit of your life but you need to stand up to it and tell the illness to feck off that your running your life not the “fibro”
My recommendations are
1. Learn to deal with fibromyalgia mentally before doing anything else. Cause there is no cure.
2. Yoga helps with your physical health and mental health. (I do a few stretches and the rest breathing techniques and relaxation) look for a place locally you will be surprised how many people go that are just like us. You will find a common long term supporter there)
3. CBD oil (contains a little cannibis but no stone off it) it tastes absolutely terrible but if you can get past that it actually works (to a certain degree) you can also buy it in Vape form with different flavors. Haven’t tried that yet but I will on pay day.
4. Try triple Omega 3,6,9 it helps a bit for concentration (fibro fog)
I really wish I had better news but unfortunately not. I keep telling myself that I’m not going to die from this unless I allow it to take over my life (mentally) I really struggled for 2 years trying to come to terms with this Illness but I’m trying to stay positive or else I’ll roll over and die.
Hope this helps hun. Chin up you can do this xx
Gentle hugs
Victoria
This is in ref. to Victoria's post
Not 100% true but mostly accurate. I have been sick with Fibro since I was in my mid/late mid 20's. I am now 42. I actually got better for a little over 2 years after about 3 years of being sick. I got up to about 95% normal again. I went back to the same job, abused my body and felt something just give inside me. I went home, got blood work drawn, tried to go back and help and was only there 10 minutes before I had to leave. I have been sick since. I do not ever foresee another "relapse" and I dont know what caused the first. My advice, if you are lucky enough to have one do NOT over work yourself no matter how healthy you think you are.
I also completely disagree with yoga or any form of exercise. It makes my condition MUCH worse. Live your life the best way you can, treat the mental stuff and whatever else you can with meds but you will end up having to deal with the rest.
The best thing is to get to know yourself. I know my body inside and have a routine as too what time I got too bed and what time to get up, rest when I've done certain activities. If I do a 4hr shift at work then that's all I do. If I do some cleaning then I stop start my routine. Thankfully I'm one of the very few that work for a very understanding company. They listen make sure I don't do too much, have installed lift keypads so I can get too areas I need to be quick if I have issues. I have a mobility scooter that also works with disability as I can't walk well.
As we've said before what works for one may not be right for another. I take about 30 tablets a day from the doc to get around.
The most important thing you need in your life is a good support network. The more people who understand you will look out for you. There'll recognise the signs of you going downhill and be there to pick up when you can't.
I think what a lot of us are forgetting is everyone is DIFFERENT. What works for one may not work for the other. I tried physical therapy,I tried acupuncture, I tried natural remedies, I tried turmeric, I go to counseling every two weeks, I tried trigger therapy injections, even my father insisted I try his omega pills , the otc drinks that say they work. You may not have a bad case and yes like I told my dr forcing me to move and exercise is NOT the remedie ......IS GETS WORSE!!!!. We must respect one another we came here to encourage not say we’ll you’re not doing this and this and that and mentally focused as if many of us are not already doing. I’m 48 and for the past 10yrs my symptoms have gotten terribly worse. Got rid of stress in my life. I woke up today JUST to go to the store and get some 🍜 soup walking 🚶 in Walmart to get some movement going ........I barely could get out of the store in time to sit down and be still trying not to get aggravated because it hurts. I went to pain classes and the drs in there say we don’t have a lot of understanding with fibromyalgia...I’m so sorry. I said all that to say those of you who are not in so much pain I am so happy for you because I wouldn’t wish this on my worse enemy. But to those of whose case is much worse big hugs 🤗 to you and stay encouraged.
Didn't say I wasnt in as much pain think the 30 tabs a day gives that away. And yes we have also said everybody is different.
You should never judge someone else by what they try to do. And yes the idea is too encourage not put one another down by saying my pain is worse than yours. I make my way around as I have a brilliant family and dr who understands. I am one of the fortunate few.
The idea was I think to let let Mark know he wasn't alone. Just because I'm on 30 tabs a day doesn t mean I don't feel pain. It blocks some of the pain making my life a little more bearable. Meaning I can share in SOME of the things that leads to a more normal life. Maybe some like the self pity that comes from disability but I'm afraid I'm not one of them, and I thought that was what we were going for support not disparagement, this I don't need in my life. When you go from able bodied to not theres already stigma and people there to put you down you don't need from others who sit there and say your not as bad as me.
If you are going to be labelled amongst people with the same illness then why bother with the forum.
That's me done.
Hi VooDoo,
I go to yoga and do a few stretches and it is great for stiffness. I don’t go to yoga fitness cause I would suffer. Yoga is good for the mind as well as the body. Have you ever tried it?
I don’t believe that no exercise at all is good for you no matter what the illness. If it’s only walking up a few steps a day it’s still called exercise. It is very important to do a little when your able to. Even just stretching your limbs because if you don’t your body will stiffen up and you make your muscles so weak they can’t possibly get you around.
It is good to hear that you went a long time without symptoms but you are right we shouldn’t over do it when we feel good. Although that’s very hard because we don’t know how long our “good” time is going to last we like to catch up on things.
You misread, I was not having a "good" period. I didnt have fibro for that period. I went from fully disabled to working in that time and 95% of my prefibro health. When it can back, im back to fully disabled.
If you were in my shoes and tried what I have tried you would know Im serious when I say no exercise. Save energy for more important things than to exert energy for the sole purpose of exerting energy. Of course some fibro sufferers get better from exercise, In the end, listen to your body, not others.
I also misread you. But why did you post a question here, after many people replied and provided their opinions, your conclusion is "listen to your body, not others"?