Fine

Beepbeep

New member
Joined
Jul 15, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
08/2014
Country
US
I used to spend hours at the gym, played nearly every sport and was always active and then I got sick and things haven't been the same since. I used to think no pain no gain but now I wonder what am I gaining from it now? Body aches, horrific spasms that feel like electricity piercing my spine, shoulders, and head. And if that wasnt enough my heart conditions cause my ankles to swell everyday so yeah I'll move around try to get things done but how can I when bending over shoots pain up my spine and starts it all over. I feel like theres a torture device with a button and it just keeps getting pressed til I'm gassed to a point where I cant get up anymore. I have to keep a daily log of my blood pressure and heart rate and wear compression socks so I dont black out from my autonomic bullshit. But yes load me on pills that help but also cause weight gain or cloud my head or make me feel more exhausted then I already feel. For years now I've been trying to look for the right routine but when it hits you all at the same time what the heck are you supposed to do. I'm a marine so I can handle pain but all of it together just gets too much. I'm 26 i should be living my best years not carrying around broken parts.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi BeepBeep. It sounds as though you are in a very tough place, and I am sorry to hear it.
My first question is: have you seen doctors and gotten a formal diagnosis? And, what medication are you taking?

Second, I want to encourage you to hang in there and take things one thing at a time if you can. It is horribly overwhelming at first, but you don't have to tackle the whole thing at once. The first thing to do is make yourself your own researcher, laboratory, and advocate. If you leave it all to the doctors you may not get what you need because they don't know much about this. Knowledge is power....so get as much as you can.
Research as much as you can, and try whatever you think might help.

I suggest maybe you start with just one thing. Say, your heart condition, and research it and try various things that might let that be better if possible. Gentle exercise, diet, whatever might help.

Best if you don't take any narcotic medication, as tempting as it may be. that's a road you don't want to go down. If you live where medical cannabis is available, try that. Very tiny tiny doses at first, work up very slowly to a dose that helps.

Basically, no matter what is going on, the best approach is a very healthy diet, enough gentle exercise, enough sleep, and so on. If you start there, it's possible that things may improve a tiny bit, enough that you could then add something else.
 

Beepbeep

New member
Joined
Jul 15, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
08/2014
Country
US
I've done research and I'm on compression socks atenalol and chlorthalidone nerve and phyc meds all formally diagnosed. Doctors tell me theres not much they can do other than meds and take it easy. I swim a lot for exercise but other than that nothing that will improve my situation at this point.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
There are things that will improve your situation. You just have to find them. the doctors don't know anything except to give people medication. that's not their fault, it's their training. But there are dozens of other things you can do that will help, and in many cases these other things help people a lot more than medication does. I am an example of this. While I still take meds, it's only as-needed now, not every day.

The first thing I would recommend is that you examine your diet, because that is really the bottom line on everything.

Cut out sugar entirely for at least a month and see what that does. You have to read labels to do this because it's in everything processed. Better yet, cut out all processed foods and just eat fresh whole foods. that alone will make your whole system healthier and that is where you have to start.

Cut out alcohol and cut down drastically on caffiene. Try going gluten free for a month (a different month from the month you go sugar-free). A different month, try going lactose-free. Try cutting out grains for a month. I am not saying any of these will help, but they might and there's only one way to find out.

Unfortunately, this is all up to you because no medical doctor can or will help you with this. You have to be your own laboratory. But, trust me, it's worth it even though it may take a long time to find the combination that works best for you.

My constant advice for people on this forum:
1) Remove stress
2) healthy diet
3) enough sleep
4) exercise
5) maintain the most positive attitude you can
6) only have supportive people around you
7) balance your life and activity so you rest when you need to and don't push yourself or overdo it.

And come here for support and encouragement!
 

Linda Ann Starr

New member
Joined
Nov 28, 2019
Messages
3
Reason
DX FIBRO
Diagnosis
04/1989
Country
US
State
WA
Hello Fine,
I am over 70 years old and suffered from FM pain syndrome since my teens. I have also been a life long professional equestrian so am not a little old lady in a rocking chair! I have watched the whole disease develop over all that time and at least it is now recognized as a real disorder and "not all in your head" as I was told for decades. Your main concern of shooting back pain sounds like it could be something other than FM. Doctors often ignore pain that might be from something else but instead just lump it in with FM once you get the diagnosis. I would have a full examination, etc. for your neck and back and see if you can get some help with that separately. Try not playing up the FM part when speaking with the doctors about this specific concern. Also, back problems can be greatly helped by a really experienced Chiropractor. All doctors come in many different abilities so you must seek out the best and those most willing to work with a difficult case. Try researching to find the best in your area and give it a try. Chiropractic can take some time, so be patient. Also, try a massage therapist who is highly experienced in treating medical conditions, not just your local feel good therapist. You may need to try several to find the right one for you. Several kinds to explore are myefascial release or deep muscle massage which you must start slowly due to the pain involved but can be extremely helpful for some people. Another massage type to try is a Hawaiian version called Lomi Lomi massage. For me, regular massage from the right practitioner has been key to keeping me function as best as possible. Finally, you sound like you may benefit from some serious pain medication at least for a time; you don't need to be on it for ever. A national trend and doctor's fears of responsibility has robbed both acute and chronic pain sufferers of much needed and normally quite safe relief. I have used morphine off and on, more and less for over 30 years and it gave me a life I could have never had without it. Do approach this carefully if you tend to form habits easily. If so, this may not be a good route for you. Many, even most people do become physically dependent without becoming "addicted" emotionally. You could seek out an experienced pain specialist for advise. Unfortunately, a good pain specialist willing to prescribe opioids nowadays is extremely hard to find, but will be well worth the effort. What sense does it make to keep suffering to the point that you hardly want to struggle thru another day? There is a current law suit by the American Civil Liberties Union to try to get citizens in chronic pain better access to the pain medications they need to live a reasonable life. Information on the suit is available on the internet. The comments I have read on Fibromyalgia Forum is some of the best I have seen and is usually wise and helpful and also well worth the effort to try. Especially important is a fresh food healthy diet with little sugar, gluten, and prepackaged food. Read the labels; the fewer ingredients the better. You do have a life in front of you, it is out there for you to find, but no one is going to bring it to you. You must be your own advocate and fight for your right to a reasonable and fulfilling life. Best of luck!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Many, even most people do become physically dependent without becoming "addicted" emotionally.
This is true. And, while I completely honor what Linda Ann is saying here, and everything else she says is very good advice, I will have to put in here that I respectfully disagree with her recommendation of taking narcotic pain medication.

If you really can use it only VERY occasionally and only when the pain is truly intense, then it's fine to have some on hand. (I do, and only take it perhaps 4 to 6 times a year). But, as she says, most people will depend on it if they use it.

If you take it every day or even several days a week, it will lead you down a road you don't want to go down. Don't do it. So, if you do that, approach it with extreme caution!

And try approaching your condition instead by altering your habits in eating, exercising, and how you live, and find out if you can get relief from those things rather than taking dangerous medication. I wish you the best of luck.

And, Linda Ann, I hope you take no offense at my disagreement. :)
 

Maxsmom

Member
Joined
Jul 22, 2020
Messages
11
Reason
DX FIBRO
Diagnosis
09/1984
Country
US
State
NM
This is true. And, while I completely honor what Linda Ann is saying here, and everything else she says is very good advice, I will have to put in here that I respectfully disagree with her recommendation of taking narcotic pain medication.

If you really can use it only VERY occasionally and only when the pain is truly intense, then it's fine to have some on hand. (I do, and only take it perhaps 4 to 6 times a year). But, as she says, most people will depend on it if they use it.

If you take it every day or even several days a week, it will lead you down a road you don't want to go down. Don't do it. So, if you do that, approach it with extreme caution!

And try approaching your condition instead by altering your habits in eating, exercising, and how you live, and find out if you can get relief from those things rather than taking dangerous medication. I wish you the best of luck.

And, Linda Ann, I hope you take no offense at my disagreement. :)
I was given pain meds earlier on in my diagnosis and all it did was constipate me lol
My 2 cents : massage , rest , eat healthy 🤗
 
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