So much pain....

Roxana Ra

New member
Joined
Jun 4, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
02/2015
Country
CA
State
ON
Suffering from FM with intense pain lately. Most of my days l have to lay in bed. I've taken tones of pills, pain killers, antiinflamatories, antidepressives, etc.
Doctors can't help me because they don't know much about this disease. It's so frustrating l have to live with the pain for the rest of my life. It's devastating my entire body. My flash can't take it, no more!
I can' t sleep without pills, can't walk, l have pain in all my muscles, my joints and strong night headaches.
This isn't life!!!
Please help!!!
 

FibroKate

Member
Joined
Jun 2, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
05/2019
Country
GR
Hi, Roxana! I was feeling exactly like you and I'm on most medications that you've aforementioned with poor results considering pain management. I used to be a highly energetic person, multi - tasking and lively, also doing three jobs and I found it extremely difficult to deal with the new situation after my diagnosis. I had to quit favourite activities or hobbies and take it easy because even if I wanted to be the same person I couldn't. I can't be the same person due to this condition but that doesn't mean that life sucks. Actually, I "activated" a new me; Practically, I can barely help my friends but psychologically I'm able to offer help, for example. I 've become a better listener. I want to help people like you because I 'm more alerted when it comes to offering any kind of help to those who need it. I 've quit habits but I found out new ones; I focused on myself more than ever. I appreciate simple moments or things and stopped being so anxiousor nervous. I found time for me and when there are days when this pain is unbearable, I lay down without feeling lazy or guilty. Most difficult thing was to realise that my life and my daily routine has changed once and for all. I still try to get this. But, believe me, even if all this pain seems unbeatable - and maybe is - your attitude towards it plays a major role. Personally, doesn't jelp me so much to think of the worse so I can feel better for the less worse [my condition in comparison to a worse one] but I feel much better when I sahre my thoughts and my pain even with other people - like through this forum - and even better when I have the feeling that I help others - not necessarily with fibro - generally when I try to help others. I know this is difficult and pain along with its consequences can be a serious obstacle to feel positive, but it worths keeping trying to motivate yourself and accept your new you. Life is out there for everyone and it doesn't care whether you 're able - bodied or not. It is just there and waits for us to live it. If you try hard, you may discover a new self, in so much pain, yes, but also capable of doing more things than you might imagine. Give it a shot! I hope I helped you. You 're not alone!
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
145
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Understand completely how you are feeling. One thing that has stood out for me is people saying to keep moving. I do that as much as I can no matter how simple. That does help some. But I have days I want to just curl up in a ball! Hope you find some relief!!
 

Melissa4pooh

New member
Joined
Jan 28, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
KS
Roxana I totally empathize with you. And there are many days I just want to lay in bed because the pain is so intense. However, I have noticed on days that I get up and move, even just to do small stuff, the pain seems to wane. Movement seems impossible when we're in bed experiencing this awful pain, but once we get up and blood flowing, we give our bodies what they so desperately need: oxygen. Yoga has become the most beloved time of my day. Best wishes and remember you are not alone.💜
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
573
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Roxana, I fully agree with everyone above who says you gotta move. No matter how bad it feels, move your body. If you don't you will lose the ability to do that, and then your life will be seven shades of deeper hell.

I know how hard it is. Believe me. But I found after spending two years doing very little and depending on pain medication that moving your body is the best thing you can do for yourself. Some days you can do more, some less. But you have to do as much as you can. This is what will make it better. Getting exercise has an almost 100% success rate in making people with fibromyalgia feel better, even through the pain. Go for a walk, even a short one, and make it 5 steps longer each day. Try an exercise video online; some you can even do from a chair.

You DON'T have to live with this level of non-life for the rest of your life! You don't. But the only way you are going to avoid that is not to give up, not to give in to it, and to become your own coach, advocate, and cheering squad and make yourself do what needs to be done to feel better. NO ONE can do this for you. It's up to you.

Eat the very best most healthy diet you can possibly afford. Even people with almost no money can eat healthfully. Believe me, I have done it. Get exercise. Be grateful for what you still have. Take the time to feel joy over the tiniest thing: a sunbeam, the moon, something funny, anything at all. And move your body. Get exercise. Only you can turn this around for yourself. Believe me, I know, I have done it. I didn't think I could, had given up, was in despair, and thought the people telling me I had to exercise and take charge of my health had no idea what they were talking about. But I finally listened, and turned it around. Now I wish I had listened and done it sooner.

I still have pain and all the same symptoms. But I also hike, dance, walk, eat well, and can enjoy my life. So can you. Start small, but start, and don't give up.
 

Roxana Ra

New member
Joined
Jun 4, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
02/2015
Country
CA
State
ON
Thank you so much, Sunkacola!!!
Your message came right on time. I have horrible pain today, but l'll get off the bed and go for a walk.
Your advice is great and l'm glad to hear that you've got your life back and you're in control of your pain. I want to get there too, to walk without cain, to dance, to bike... all these are just dreams now. (Can't live without painkillers and sleeping pills.)
Hopefully my heart will not let me down, as l fell so tired and l have palpitation some times.

I won't give up.
 

maninpain

New member
Joined
Nov 26, 2019
Messages
1
Reason
DX FIBRO
Diagnosis
07/2007
Country
CA
State
ON
Dear Roxana Ra, I read your message today and I just want to say please hang in there as there are a LOT of us who go through similar issues on a daily basis and it's so easy to get despondent about the future.
This is my first post and I used the name "ManinPain" as Fibro is more common in women than men although some men also suffer from this horrible condition.
My fibro started in 2008 after a severe bacterial infection. Initially my doctors had no idea what it was and recommended physio and massage both of which did not help at all. Eventually my pain spread to most parts of my body and now like a lot of people with fibro I wake up feeling pretty shitty in the morning but as someone said keep MOVING despite that as the pain gets less the more we keep moving and doing stuff we love. Sometimes even doing simple things like walking or yoga can be difficult however you've got to keep doing it. Like you I need medication on a daily basis to sleep and medication to control my pain. Depression is huge issue because I am unable to tolerate antidepressants . Keep reading the fibromyalgia forum and you will realise that you are not alone. We understand and know your pain and frustration because we all face it on a daily basis but work with your body and figure out how to live life with this condition. Good Luck and we are there for you!
Maninpain
 

Charz

New member
Joined
Dec 21, 2019
Messages
2
Reason
DX FIBRO
Diagnosis
03/1980
Country
US
I find with my weekly chiro, acupuncture, massage and a walk in the woods a couple of times a week keeps me going. I havne't been able to do this for 3 months due to the virus and I am really in pain and insomnia is so crazy. Things will get back to normal and I will be better. I hope you will try this. Some exercise is really important.
 
Joined
Mar 17, 2020
Messages
20
Reason
DX FIBRO
Diagnosis
09/2007
Country
CA
State
QC
Good morning Roxana,
I hear you...its discouraging....I am now trying lavender body oil which calms down the creepy crawlies in my legs releases my tension a little and began listening Deepak Chopra meditation at bedtime...it helps....
Hang in there ...there are better days to come but you must keep on moving...
Take care and have a better day!😊
 

Debbie30252

New member
Joined
Feb 17, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
12/2019
Country
US
There's been a lot of discussion around serotonin levels being a contributor to worsening symptoms. I don't like being on medication but was starting to feel desperate as I had terrible insomnia which of course made the pain worse. I asked my doctor for Prozac and it has made a huge difference. I'm not pain free and still have rough nights sleeping but its manageable
 

Dawn1

New member
Joined
Jun 5, 2020
Messages
1
Reason
DX FIBRO
Diagnosis
06/2013
Country
US
State
MD
Hi Roxana,
I’m feel the same way. You get to a point that you get lost in your pain. I find something to excite me to get motivated to help myself. I write my symptoms and feelings down in a journal when I’m alone. It helps me to release some frustration and anger at my pain. Then my energy is higher and It takes my mind off the pain temporarily. Then I get motivated to get myself moving.
It’s so very hard. My Dad passed from ALS. Fibromyalgia has similar mental pains. I know exactly what it feels like for your mind and body to fight each other with fibromyalgia. I have been struggling since my first diagnosis in 2013. None of the prescriptions or doctors have worked for me. I try to use as much holistic and herbal therapies I can because that is what helps me the best. It’s hard financially for those therapies because it’s not covered by insurance. That makes me angry because I’m suffering. Water/ pool therapy is the best and is the most affordable when you have a bathtub. Take care 💜
 

Roxana Ra

New member
Joined
Jun 4, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
02/2015
Country
CA
State
ON
Thank you all for your kind words!!! 💜
Today l could get out of the bed and cook a soup.
The pain is still there but l'm trying to ignore it.
I do have a journal and l write down how l feel daily. The worst is when the night comes. I have anxiety and the pain scares me. Sometimes l have the feeling that l'll get paralized from my weist down.
Can FM degenerate with aging and change into some other horrible disease???
I know l have mild arthritis in my hips...
I have strong headaches and l sweat when in big pain.
I took Cipralex for a while but l had side effects and l stopped it. No improvenent though, just getting worst.
I've learned about CBD Oil but l've never tried it.
Can someone tell me if you've tried?
I also use Castor Oil as ointment for my back pain. I apply with a hot towel for 30 mins daily.

I really want to get better. Life is beautiful and l'm not that old yet to think about leaving the world..
God bless you all!!!
 

Roxana Ra

New member
Joined
Jun 4, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
02/2015
Country
CA
State
ON
Dear Roxana Ra, I read your message today and I just want to say please hang in there as there are a LOT of us who go through similar issues on a daily basis and it's so easy to get despondent about the future.
This is my first post and I used the name "ManinPain" as Fibro is more common in women than men although some men also suffer from this horrible condition.
My fibro started in 2008 after a severe bacterial infection. Initially my doctors had no idea what it was and recommended physio and massage both of which did not help at all. Eventually my pain spread to most parts of my body and now like a lot of people with fibro I wake up feeling pretty shitty in the morning but as someone said keep MOVING despite that as the pain gets less the more we keep moving and doing stuff we love. Sometimes even doing simple things like walking or yoga can be difficult however you've got to keep doing it. Like you I need medication on a daily basis to sleep and medication to control my pain. Depression is huge issue because I am unable to tolerate antidepressants . Keep reading the fibromyalgia forum and you will realise that you are not alone. We understand and know your pain and frustration because we all face it on a daily basis but work with your body and figure out how to live life with this condition. Good Luck and we are there for you!
Maninpain
Hello Maninpain and thank you for your message.
I believe l had a bacterial infection too, maybe l still have it... Two years ago l had a flegmon due to an injection with a pain killer. The lab test from the discharge said l had Gram bacteria, and doctors prescribed 6 types of antibiotics. Yet, l could not heal the flegmon in less than six months....
I believe Gram bacteria did not react to the antibiotics or l am immune to these meds....
How did you fight to get better?
These viral/bacterial infections are so hard to treat...
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
573
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Roxana, good for you!! You are starting on the path toward being able to manage what is going on in your body and it will get easier as you go along. Just don't ever give up and keep up the best positive attitude you can. Let yourself have times to rant or rave or cry or feel bad if you really need to. You get to do that, too. But limit it. Tell yourself you have one hour, then you have to stop. Or even give yourself a whole day but then no more. And don't allow it very often or it will just become a habit. I usually give myself about one half day a month if I really need it, to do nothing and just let myself feel bad.

CBD by itself doesn't help very many people, statistically. I have researched this quite a bit. Although you will hear anecdotal information that it helps certain people, those people are not the majority. What really helps (and you are lucky because you live where it is legal) is BCD 1:1 with THC. This is what I use, and I use a tincture because I am not going to smoke or inhale something and hurt my lungs! I started out with a tiny dose, and worked up to where it is helpful, and know not to go over a certain amount if I don't want to get high (which I don't).

No one can tell you what dosage will work for you so you have to experiment. But it really does help a great deal. I have found that not only has it helped me on an almost daily basis, after taking it daily for about a year I find that now I don't even have to take it every day. That, combined with exercise daily has helped me to keep the pain at a low enough level (it is never all gone, of course) that I feel I can live a very good quality of life and mostly ignore the pain. I think the tincture made it possible for me to do more physically, which in turn made the pain and other symptoms lessen.
Of course, I also take care of myself, rest when I need to, and don't push myself too hard.

I highly recommend that you give the tincture 1:1 THC:CBD a try. You have nothing to lose, and while it doesn't help every one who tries it, if it does you have a lot to gain.
 

Roxana Ra

New member
Joined
Jun 4, 2020
Messages
6
Reason
DX FIBRO
Diagnosis
02/2015
Country
CA
State
ON
Roxana, good for you!! You are starting on the path toward being able to manage what is going on in your body and it will get easier as you go along. Just don't ever give up and keep up the best positive attitude you can. Let yourself have times to rant or rave or cry or feel bad if you really need to. You get to do that, too. But limit it. Tell yourself you have one hour, then you have to stop. Or even give yourself a whole day but then no more. And don't allow it very often or it will just become a habit. I usually give myself about one half day a month if I really need it, to do nothing and just let myself feel bad.

CBD by itself doesn't help very many people, statistically. I have researched this quite a bit. Although you will hear anecdotal information that it helps certain people, those people are not the majority. What really helps (and you are lucky because you live where it is legal) is BCD 1:1 with THC. This is what I use, and I use a tincture because I am not going to smoke or inhale something and hurt my lungs! I started out with a tiny dose, and worked up to where it is helpful, and know not to go over a certain amount if I don't want to get high (which I don't).

No one can tell you what dosage will work for you so you have to experiment. But it really does help a great deal. I have found that not only has it helped me on an almost daily basis, after taking it daily for about a year I find that now I don't even have to take it every day. That, combined with exercise daily has helped me to keep the pain at a low enough level (it is never all gone, of course) that I feel I can live a very good quality of life and mostly ignore the pain. I think the tincture made it possible for me to do more physically, which in turn made the pain and other symptoms lessen.
Of course, I also take care of myself, rest when I need to, and don't push myself too hard.

I highly recommend that you give the tincture 1:1 THC:CBD a try. You have nothing to lose, and while it doesn't help every one who tries it, if it does you have a lot to gain.
Dear Sunkacola, thank you for your advice.
How do you take the tincture? Under the tongue? I think the liquid is more expensive than the pills. CBD pills (without THC) are about 1$/pill.
I've learned that the tincture (50/50) is $70 for 20 ml.
I have to make some time and go visit a cannabis shop soon.
 
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