Diagnosed with FB-Hello, everyone! Thank you!

FibroKate

Member
Joined
Jun 2, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
05/2019
Country
GR
Hello! I m recently diagnosed with FM and I definitely need help regarding this syndrome and mostly its psychological effects. As for my daily routine, I experience tremendous stiffness when I wake up, so much that I can't move for hours and I haven't managed to improve this situation-I have the same problem after every time I wake up;it's like all the pain is upon me. Does anyone know how to ease this kind of pain? Generally I suffer from most fibro symptoms-pain all over my body and some parts are affected more, chronic pain, migraines,dizziness,clumsiness,lack of balance,IBS,RLS which has affected my arms as well,bladder problems,cognitive issues,sensitivity with sounds,smells,tastes, insomnia and so on. I ve started physiotherapy,regular exercise,psychotherapy and massage. I m on Lyrica (75 mg/day) along with other painkillers as well as cbd oil so that I can sleep at night. If anyone could recommend more natural remedies, it would be nice. Also, what kind of exercise(besides yoga-pillates-aerobics)can help ease the pain?Thank you all and stay strong! I feel already better because I can share my thoughts about this.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
145
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Hello! Yes this forum is a great place to share and vent etc. I have learned alot just reading others stories, suggestions etc. I currently do not take any medications and am looking into CBD but there is soooooooo much info out there and its not cheap to do alot of trial and error. So far for me I took the advice of @sunkacola and I just keep moving, no matter how I am feeling. That does help to some degree and is emotionally beneficial as well. :)
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
570
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Kate,

I actually felt as you do: too stiff and in too much pain to get moving in the morning. But I was determined to take the necessary steps to take responsibility for managing this syndrome without taking tons of pain medication. I was being told to move and didn't think I could.

Here is what I did. I would start out lying there, and would not permit myself to say to myself "it hurts too much to move", or "I can't move" or anything else negative. I didn't try to tell myself positive things, just did not allow the negative thoughts. Instead I would tell myself that I was going to do my best, whatever that was.

Then I stretched my whole body, one bit at a time, and very very gently. I found out where the pain or stiffness was the worst, and sort of mentally sent my thoughts there to try to relax it because when I am in pain I always tend to tense that part or another part of my body (many many people do this). Then I would move just a bit. One leg, back and forth. then both legs. And so on. all this while lying down.

Then after about 15 to 20 minutes of this I would get up. I have to, because I have dogs who have to be let out and fed (I recommend having a dog!), but you can use whatever works. Like telling yourself you can have coffee or tea when you get up. Whatever works. I sometimes crippled around the house for a few minutes, but no matter what (unless is was pouring rain, which makes the pain and stiffness worse for me), I would go outside. If I could manage a short walk, I did. If not, I would at least have my coffee outside. Often I would feel I couldn't go for a walk but after sitting outside for 10 minutes I would find I could.

That all started 3 years ago. I have built on that bit by bit slowly but surely and now I go hiking and do yard work again and take dance classes and can be active on most days in spite of the pain (which is still present most if not all days but not as bad as before). You can do it too. It doesn't matter what kind of exercise you choose, just make it something you enjoy doing or you won't keep at it. Just start small, don't get discouraged, and never give up.
 

FibroKate

Member
Joined
Jun 2, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
05/2019
Country
GR
Hi, sunkacola! Thank you so much for the advice; I'll start from tomorrow morning, I can follow the steps you've mentioned I guess because whenever I 've tried to get up while on pain I ended up crying feeling desperate because I used to be highly energetic and seize the day since morning!So, I want to try sth which goes step-by-step and definitely stop feeling so desperate because of this stiffness. Also, I try to keep positive but these times I can't prevent my mind from focusing on pain although I try really hard. As for the rainy days or sudden weather changes, almost nothing works, unfortunately... Two days ago, there was a sudden storm and then hail and I could barely stand. I don't mind crippling a bit I just don't want to spend so many hours in bed since I ve already woken up...My job makes me get up but I don't always work so I found another motivation-I have to water my plants and work on some projects-even reading or answering/helping on this forum is a motivation because I want to get up, sit on my balcony, enjoy my coffee and try to do my best to help all those people who share the same condition.
In my country, there's no such thing like this forum and unfortunately people don't talk about conditions/syndroms etc. hence I m grateful that all of you are out there...Thanks again for the help!
 

FibroKate

Member
Joined
Jun 2, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
05/2019
Country
GR
Hello sjbrown!
Thank you for the reply; I totally agree with you about the forum, the stories and the suggestions. Unfortunately, I have tried to stay medicine free, but it 's proved impossible, at least for now. Only with Lyrica I found some relief yet I try not to take pills every time I experience pain. I go for more natural stuff, for instance, I take natural peppermint oil capsules before meals since I deal with IBS and help me a lot-my doctor suggested because I used to take ibutin since I experience colitis too often. As for the cbd products, I tried cbd oil while on a trip to London and I immediately felt better. Cbd with thc less than 0.2% cannot make you "high" or "stoned" for sure. I managed to sleep after so many years suffering from serious insomnia. It takes some time to find which dose suits you but it's worth trying! I d like to try other products as well, but in my country cbd hasn't been recognized as treatment on the contrary the majority believe these products are dangerous and worthless. Well, I found relief because just before my diagnosis I almost had been alcoholic since alcohol only relieved my pain and made me fall asleep(waking up with hangovers, of course)
I think that along with a professional's opinion, it ll be fine to go for those products-they 're not chemical and most have no side effects! I hope I helped you,too! Thanks again and stay positive!
 

FibroKate

Member
Joined
Jun 2, 2020
Messages
22
Reason
DX FIBRO
Diagnosis
05/2019
Country
GR
Hi josephrob!
I haven't tried cbd oil during the day since this dosage definitely makes me fall asleep so I can't risk taking it while driving or teaching children! But I would like to ask you how much do you take so that you can function without being sleepy? Should I try less drops? Because I still struggle to handle social anxiety, as well. I know the dosage is quite different for each person; I take 5-6 dosages every night and I use cbd oil 5% with THS 0.02%. Which dosage do you think can help me in order to feel less socially stressed?
I have to ask people abroad because in my country there are cbd products places but there aren't people who can actually suggest me how to use these products except for when it comes to treat my insomnia...
Every opinion matters;whenever you are available of course. Thanks in advance!
 
Top