Helplessly hoping...

DesertBohemian

New member
Joined
Sep 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
11/2018
Country
US
State
AZ
Hello everyone. This is my first time posting in this forum. I really need to talk to people who understand chronic pain. I feel so alone. I was diagnosed with fibromyalgia and CFS about a year and a half ago. It has completely rocked my world! I am no longer the same person. The transformation was swift and still has me reeling. I was a very athletic person who always had a strong capable body. The only pain I ever had was brought on by over training. Now I am a shell of my former self. I also developed a bad case of Plantar Faciitis not too long after the Fibromyalgia. I deal with so much pain and lose the ability to even walk some days...like today. I’m having a flare up of both my Fibro and my PF now and have been in so much pain and unable to walk for 2 days after coming back from camping for a couple of days. I am so depressed and don’t know how to live my life anymore. Im unable to work and unable to get disability so we are struggling financially. I think the stress of that makes my fibromyalgia worse. I don’t know how to enjoy life anymore. How do I live with this condition? I’ve begun using marijuana to help with the pain and unhappiness of life but their is still only so much this amazing herb can do and besides I cant just stay high the rest of my life. I have a family who now has to take care of me and wait on me so much and I HATE that. I feel so useless and invaluable to them like this. I’m just helplessly hoping something changes and my life gets better.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
164
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
All you can do is take it one day at a time. It can be VERY depressing for sure BUT we have control over that too. I hope you have a good support system within your family :) I take the bad days as they come and I just keep going. I too hate not being able to do things they way I used to but I no longer beat myself up over it. Every once in a while I will have a mini fit over it LOL But thats just being human. This forum is a great place to vent and learn and to not feel alone with this horrid thing called Fibromyalgia!! :)
 

DesertBohemian

New member
Joined
Sep 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
11/2018
Country
US
State
AZ
How long have you been dealing with the pain of fibromyalgia?
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
164
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
A couple years but wasnt diagnosed until January of this year.
 

DesertBohemian

New member
Joined
Sep 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
11/2018
Country
US
State
AZ
It’s very frustrating to get a fibromyalgia diagnosis isn’t it? Sometimes I feel like my doctors landed on Fibromyalgia bc they couldn’t figure it out and so just settled in that. I had a doctor say to me “it’s probably just Fibromyalgia”—JUST fibromyalgia, like it’s no big deal! If he had to live with the pain that I do I guarantee he would never say “just Fibromyalgia”. So how do you cope, treat, live with it?
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
734
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Desert Bohemian, and greetings from one desert rat to another.

I am sorry you have to be here but welcome to this forum anyway.
I recommend that you read the post I did called "Advice for managing fibromyalgia (especially for newcomers). In it I detail all of the various things that can be done that will probably help you to deal with this both physically and mentally. Don't feel overwhelmed, no one says you have to do them all at once or even do them all, but I have done and continue to do all of them and find it definitely helps, and others have said the same, so at least give some things a try.

One of the most important things is to reduce stress in every way possible.

Since you are in a state that has state-funded health care for low income people, you may be eligible for that if you have little to no income, Might want to look into that. I am a proponent of medical cannabis, and use it myself. Tincture is better than smoking because smoking anything at all damages your lungs.

Like you I was athletic and very active and fibro knocked me down. I stayed down for a long time until I decided to try to do anything I could to help myself. The first and most important thing I did was go back to being active. Starting so very small that it was embarrassing for someone like me, and building up so gradually I could hardly tell I was building up at all. but it made the difference. Try not going camping for 2 days, but instead taking a short walk every day and build on that. But keep moving without over extending yourself. It's hard at first because a lot less is overextending than it used to be! but you will get the hang of it.

Get out into nature as much as possible! Even if it means you drive somewhere and then just sit out in the mountains or desert and don't even walk around. Just being out there helps.

Best of luck and let us help.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
164
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
It’s very frustrating to get a fibromyalgia diagnosis isn’t it? Sometimes I feel like my doctors landed on Fibromyalgia bc they couldn’t figure it out and so just settled in that. I had a doctor say to me “it’s probably just Fibromyalgia”—JUST fibromyalgia, like it’s no big deal! If he had to live with the pain that I do I guarantee he would never say “just Fibromyalgia”. So how do you cope, treat, live with it?
I have just learned to cope. I like to read to escape and that helps. I also recently started playing retro video games. I bought a system for my grandkids and I have had fun playing it with them and at times play by myself. Its a good forget how you feel for a bit :) I also take vitamin C daily, a multivitamin, magnesium (prescribed by the dr) and recently started taking krill oil (havent been taking it long enough to know if it will help yet). On bad days I just keep going and do what I need to, but just pace myself more. Cant really say I have any truly "good"days but on the days I feel better I just enjoy. In my case it is possible that I also have Sjogren's - have an appt with a new rheumatologist in November. I had bloodwork come back that the other rheumatologist said "indicated" Sjogren's and when I asked more questions he just said will retest in 6 months. Barely gave me the time of day so I requested a new one!!
 

Affinity

Active member
Joined
Sep 9, 2020
Messages
72
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
So sorry to hear you have been struggling but you aren't alone, we can all relate!

One of the most intimidating aspects of fibromyalgia is that there are so many things going on healthwise that it's like trying to play whack-a-mole. One thing pops up so you try to hit it but then another and another and another etc. This is stressful and frustrating but something we have to learn to handle somehow.

I advise that you start trying to fix one thing, for you I would say the plantar fasciitis, because once that is fixed you can be more active and if you can be more active then you can use exercise to help manage your symptoms better. I struggled with PF for like 2 years and tried everything until I discovered what worked for me. I had to strengthen my feet in order to overcome the PF. This is the opposite of what many doctors tell you but after steroid shots and ice and braces and special shoes etc I was desperate. I ended up getting a rebounder and using that barefoot in order to strengthen my feet. I don't know if that will work for you but once I started using it regularly, even if it was just 5 or 10 minutes a day, I noticed my PF pain decreasing in a rather short amount of time.

Once you solve the PF issue you can go onto the next mole that pops up in your fibro journey, but one thing at a time, and even if it's slow it is still progress.
 

DesertBohemian

New member
Joined
Sep 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
11/2018
Country
US
State
AZ
Super positive! And a great reminder. I tell my kids all the time to chunk it (tackle one thing at a time when you’re overwhelmed by something big). I guess it was just too much for me yesterday ( I was in a lot of pain! 😫) and I forgot so thanks for that. So what is a rebounder?
 

Affinity

Active member
Joined
Sep 9, 2020
Messages
72
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
Super positive! And a great reminder. I tell my kids all the time to chunk it (tackle one thing at a time when you’re overwhelmed by something big). I guess it was just too much for me yesterday ( I was in a lot of pain! 😫) and I forgot so thanks for that. So what is a rebounder?
A rebounder is a mini trampoline! It's actually kind of fun. You can get them pretty cheap, my first one was about $35 and it lasted for 5 years of regular use. I got a new one maybe 6 months ago and it was an upgraded version for like $70. If you have balance issues they have them with handles, too, but I don't have any handles on mine.
 

Affinity

Active member
Joined
Sep 9, 2020
Messages
72
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
A rebounder is also very good for the lymphatic system and is helpful if you have fascia issues which I definitely do. I just run in place on mine but there are videos and stuff you can find if you want more variety of things to do on them.
 

DesertBohemian

New member
Joined
Sep 15, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
11/2018
Country
US
State
AZ
Thanks guys. I’ll look into it. It sounds like total torture right now! But I’ll try anything.
 

Affinity

Active member
Joined
Sep 9, 2020
Messages
72
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
One thing with PF is that once you get moving the pain tends to subside a bit, the challenge is just to get moving because it hurts so bad, right? I have been there and I understand. On my weak days when I use the rebounder I even just walk in place, without even really bouncing, but because it's a trampoline there is no impact like there would be walking on the floor or the ground. So it's much easier on the feet and joints than regular walking!
 
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