Normal is a strange word because nothing is really “ normal “. As some of you know, my long term disability claim was denied. This is not social security. This is LTD from when I was working full time as a nurse. ALL my doctors said I’m unable to work due to Fibro, yet they denied me because they feel I can work, as a nurse, at a desk job either part time or full time. Plus they threw in a comment that my mental health issues play a large part of why I have Fibro pain/ flares. . My complex PTSD, depression and anxiety is considered a pre existing condition. I’ve had those issues all my life and worked full time as a floor nurse. I have never been fired either. Anyone else in pain every day? On a good day it’s a 4(0-10). I have, on average, three to four flares a week. Anyone else? My body hurts everywhere except my stomach and head. I’m lying down in pain more days than I’m up and about. I no longer can go grocery shopping for a few items without it putting me in a flare. For 2 days straight, I have had constant burning, throbbing, achy pain. All my joints hurt. I feel this tingling sensation that is not like when your arm falls asleep. My pain is a level 9. I live alone but the garbage needs to be taken out, unload and reload dishes in dishwasher. I don’t have arthritis or any secondary condition. My Fibro is getting worse. There is no explanation why? Does anyone else have their Fibro getting worse? Just your Fibro? I thought Fibro didn’t do this. Anyone? What is normal? There is absolutely no way I can even work part time. I look drunk most of the time when I walk. Fibro fog, and horrible fatigue. Anyone else have this out there??? Anyone end up in a nursing home just due to Fibro? So far, no medications have helped my fibromyalgia pain. I’m not on any opioids because I know with fibromyalgia, the addiction rate is high. I asked my doctor today, she’s awesome, but not my rheumatologist, why my fibromyalgia is getting worse. She said she didn’t know why. That Fibro is this misunderstood disorder that comes with a lot of different symptoms. I saw her today via video. The people who I have met in person, who have Fibro, can work. They have said that their Fibro isn’t as bad as mine. I’m not saying this as though it’s a competition. What is normal? I read your posts and can relate to so many people. Fibromyalgia is taking a toll on my body mind and spirit. I use heating pads, headed blanket, no sugar in diet, all sorts of pain creams, stretching, yoga if I can tolerate it. I type in yoga for fibromyalgia on YouTube. Drink lots of water, have been eating healthier, force myself to sit up in a chair periodically even when it makes my pain worse. I’ve done physical therapy, see a chiropractor. I’m sorry for complaining. I just want to know what can I do better? Can I live the next 10, 20, 30 or 40 years like this? Again, I’m sorry for complaining. I know I’m feeling sorry for myself. I know there are people on this site who have it far worse than me. I’m just sad. I want to be better. And for sure, I don’t want to get worse.
Freedom, what a lot of very important issues to talk about!
(Edit: better readability, I hope)
ALL my doctors said I’m unable to work due to Fibro, yet they denied me because they feel I can work, as a nurse, at a desk job either part time or full time.
Can you file and objection or take them to court on this? Can anyone counsel you about it?
Plus they threw in a comment that my mental health issues play a large part of why I have Fibro pain/ flares.
So what … difference does that make, even if?
Anyone else in pain every day? On a good day it’s a 4(0-10). I have, on average, three to four flares a week. Anyone else?
Before my special treatments worked: yes, pain like yours. More like a continual flare for 15 months.
My Fibro is getting worse. There is no explanation why? Does anyone else have their Fibro getting worse? Just your Fibro? I thought Fibro didn’t do this. Anyone? What is normal?
My wife claims my fibro is getting worse, or would be without my continual analysis and treatments. Books tend to say it doesn’t get worse, but I’ve heard of hundreds of us where it did. If it didn’t get worse we wouldn’t be where we are…
There is absolutely no way I can even work part time. I look drunk most of the time when I walk. Fibro fog, and horrible fatigue. Anyone else have this out there???
I’m struggling very much working part time. My body is saying No most of the time. I also can look drunk or like a very old man when I walk. Not too much fog, but plenty of exhaustibility. Only cryotherapy & TCM/acupressure helps - if I didn’t have that: no work, no energy.
Anyone end up in a nursing home just due to Fibro?
I’ve heard of people asking this same question, but not someone who really has.
So far, no medications have helped my fibromyalgia pain. I’m not on any opioids because I know with fibromyalgia, the addiction rate is high.
No medications have helped my fibromyalgia pain either. I was very skeptical about tilidine, but I tried almost everything that was offered. It gave me seizures that same day.
The people who I have met in person, who have Fibro, can work. They have said that their Fibro isn’t as bad as mine. I’m not saying this as though it’s a competition.
Of the people who I have met in person, work was usually a big problem, even part time. But mine is worse than anyone of those I have met in person. I cdn’t do most of the things fibromites could do in the clinic, or they harmed me.
I use heating pads, headed blanket, no sugar in diet, all sorts of pain creams, stretching, yoga if I can tolerate it. I type in yoga for fibromyalgia on YouTube. Drink lots of water, have been eating healthier, force myself to sit up in a chair periodically even when it makes my pain worse. I’ve done physical therapy, see a chiropractor. I’m sorry for complaining. I just want to know what can I do better?
The things you are doing are also the things I am, but they are only accessories to my main treatments. Remember: I’ve tried 60+ treatments for fibro and 40+ docs to make sure what is fibro and what isn’t, and 15+ physical therapists. But the only things that have generally improved my Ache/pains etc. (and didn’t harm) were first osteopathy, then cryotherapy and especially TCM/acupressure, and I’m hoping that and the ozone-injections and then acupuncture may do some more. Plus analyzing and finding the invisibly moving sweet spots of each actiivty, a Sisyphean task. Don’t know if there’s anything there which helps.
Can I live the next 10, 20, 30 or 40 years like this? Again, I’m sorry for complaining. I know I’m feeling sorry for myself. I know there are people on this site who have it far worse than me. I’m just sad. I want to be better. And for sure, I don’t want to get worse.
I think I’ll have to live like this the rest of my life. But I’m keeping my spirits up and fighting. I’m blessed tho in that I’ve had to strengthen my mind & inner energy all my life, and it still is strong.
Hang in there!
Hi JayCS! Thank you for your responses to my concerns. Can you tell me about ozone injections? I’ve never heard about those before. And what is TCM? Cryotherapy sounds COLD!!! Brrrrrrrr!. How has it helped you? Is it freezing your brain so you don’t have FIBER FOG??? Lol!!! . It sounds very uncomfortable. VERY UNCOMFORTABLE.
Hi Freedom Thank you for your interest!
In short: All 3 treatments belong to alternative medicine, have few side effects and are individual, so will probably never be scientifically tested or recommended.
Ozone tries to be extra breath for the cells.
TCM (Traditional Chinese Med.) finds and treats connected parts of the body, in this case: lines and points of our muscles, fascies and nerves etc.
Cryotherapy for the Ache is like - actually better than - ice cream in the burning sun or cooling your wrists & arms when it’s hot: it numbs and soothes the pain. It really is not that uncomfortable - it’s by far not as bad as eating too much ice cream in one go, more like a winter walk. Cold showering is tougher than the nitrogen-cold air in a chamber or barrel. And you get used to it. In the rheum./fibro clinic I could do it 2x/d, but unfortunately it was much “warmer”, so not quite as effective. But just think: After 3 minutes you come out, with no side effects, you warm up immediately, but can often suddenly jump like a young deer, have energy, almost no pain, feel healthy again, at least for a few hours, sometimes days: Why wouldn’t you do something like that???
I’ve written and will be writing more about the ozone autohemotherapy here under ‘treatments’:
Here I’ve written about all the various types of TCM and my experiences with them (or something similar), especially how the mixture of TCM and acupressure has helped me very much indeed:
My PT (cryo&acupressure) compares it with that. I agree only is as much as the cold creeps on you slowly in both, so the shock is not as big as with cold showering. She also means: for non-fibromites. But it also creeps out of you very slowly after a long winter walk, I can remember, when I used to do that before fibro, of sometimes needing hours to feel OK again. (Now I don’t risk it too much, even tho my cold tolerance is better. I never go above 90mins., better 40-60’. And only 20-30’ if I’m not feeling too good.) After the cryo you feel warm pretty immediately. After a cold shower you do too, but I sometimes need a hot water bottle for me feet. Yesterday I cold showered at 12:20 and then did cryo at 1:10 - that was completely OK for my body, but my feet had to be packed in warmly after and remained slightly cold…
Hmm - well, yes, thinking about it again - cryo does freeze … my nerves, exactly what I need. And not just the pain, but clears my brain day at night, so I can sleep again… wot a rhyme… And uncomfortable? About as uncomfortable as the prick of injection. And FAR less uncomfy than the side effects of most of the fibro-meds I’ve tried. Only our bodies don’t realize and don’t associate them with the darn pill-taking. Needs quite a bit of head work…
And I’ve twice now thought the ozone is making my head clearer, so that might be anti-fibro fog too…
I think I will pass on this one, JayCS. A huge trigger for me is getting too cold, so purposefully trying to freeze myself for even 2 or 3 minutes sounds like pure torture! I am glad though that it appears to be helping you.
Hehe, try to pass it on by all means! But you aren’t the only one, so I think I’ll have to take it back. Altho I personally know a lot of fibromites who benefit (my PT bought it for that reason, she is has fibro herself, and it was a standard treatment in the fibro-clinic I was in), no-one I’ve talked to has been convinced.
But just let me add two more things:
Getting too cold used to be one of my absolute biggest triggers too! Oct2019 I flared big time after having to stand outside at 17°C/63°F for an hour. My first time was too cold -130°C, which hurt a bit, so I went up to -110°C, altho it was OK after, but then went down again bit by bit to -150°C as I got used to it. So it took about 3x to realize that & how much it was helping.
My wife suggests emphasizes: You don’t freeze in or after the cryo! In those 2-3 minutes your are numbed. And after that you are warm, because in it your blood vessels have become narrow (vasoconstriction) and afterwards they become wide again (vasodilation). So you quite to the contrary “warm up” by doing it, and do not flare. (To feel safe you could take something warm for afterwards with you, like tea or pads).
OK, enough of that - just trying to make myself understood right…
Hey, Struggling, @JayCS and @Freedom!
Something I like about the Cryotherapy that JSC taught me is that you don’t put your whole body in the cold water, at first. You start with just a hand, or hand and arm - or foot, or foot and leg…I take baths more than showers, so I haven’t tried it out much, but the next time my wrist hurts like it did a few nights ago (Keeping me up several hours, with ice packs on it), I’m going to try the very cold water first, and see how it goes…Hey, when you’re hurting, never say never to a possible solution!
Freedom…I feel ya. The first thing that hit me when I read your post is ‘there is only YOUR normal.’ (and even that changes, for me, daily).
If there is an appeal process, I’d suggest investigating that. Maybe one of those lawyers who ‘don’t get paid unless you get paid’ type of thing? For me, my pain changes daily, and is not usually an all-body thing. The all-body thing happens like today, when my brain just is sluggish and my desire to do…anything…is dampened. I happen to believe (with no medical background) that mental health issues and fibro are intertwined. How can one feel upbeat when one is swimming against a tide of pain and fog? How can one get rid of pain and fog when they feel helpless or hopeless? I do the whole ‘live alone’ thing, too, and push through every day, but not as bad as a 9/10 on the pain scale, so I feel for you on that. Wishing you well.
I relate with you quite a lot, Freedom. It is extremely early in the morning where I am now and I wish I could sleep, unfortunately, I am in so much pain that it just isn’t going to happen. My pain level fluctuates day by day but it has been especially horrible lately. I don’t ever remember having a time that I haven’t been in pain, and to be honest I have no idea what feeling “normal” is like. I hope that PT helps along with other lifestyle changes that you mentioned, I hope you get some kind of relief and that your pain level comes down. Hugs.
I’m sorry you are hurting so much Dodi. Hugs to you.