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Mojoblowjoe

New member
Joined
Feb 26, 2015
Messages
9
Reason
DX FIBRO
Diagnosis
10/2010
Country
US
State
no
hello,
I'm almost 30 and have been dealing with my Fibro for 5 years officially and 10 years unofficially......and I'm just looking at this long road, might live to 60 or longer with this how do I keep suffering through? I'm opiate intolerent and can only take them with cannabis(medical I live in a medical state) or I get really sick from them and its now illegal for me to take the medication that helps percacet and a joint twice daily.

Now I have to rely compeltly on cannabis(the only thing that helps me sleep, being insomniatic and have cronic fatigue is as close to hell as ive found) while i search through the endless drugs for one to replace the percacet(even tamidal has an ill effect like an opiate, even tryed kratom still got ill) but most are worse then the Fibro with the side effects......worst is trading my fibro fog for a cannabis fog is not a great trade off, Cbd rich cannabis products help a lot but are expensive and hard to find(even though most medical patients would benifit more from it).

I guess I just need to vent, I live a lonley life here and it gets to feel like I'm on an endless ride through torture town and everyone around me is smiling and happy. Being a man I feel like I'll never find a women who will except me......after all my ex-wife left me shortly after my condition got so bad I havnt been able to work for years now, its hard to be reliable when your body its self isnt and what kind of man is truly a Man if he cant be relied upon.

Idk i've already been through the suicide route and cant go through that again but to be honest I almost felt better wanting to kill my self because at least I had somthing, some escape plan some way out.....but now that I have religated to live my life tell its natural end Its like I've lost my last friend.....because those who suffer long term know the truth that death is all we have to control in life. I just wish I could find the zest for life so many seem to have these days, I feel like our society is so focused on making everyone glass half full thinkers that those of use (through circumstance or mentality) are glass half emty thinkers are told to sit in the corner and shut up.....which is the last thing we need from our fellow human. Wish I could be that cheerfull happy to be alive disabled person but I just dont think I have it in me anymore.
 
I'm definitely a glass half empty type, I like to call myself a realist but I dunno some days I just feel angry and I want to express that without criticism for it. My husband recently told me he doesn't love me anymore that he hates my illness and who I've become, that he wouldn't have married me if he met me now. I accepted all this with an open mind because I think I can actually understand that. He says he is over Fibro. Which means in essence he is over me because like it or no I cannot change the impacts this has on me and my life. Even if you aren't letting fibro "control" you that doesn't mean you can do what you used to. I know it's important to be positive but I WILL NOT wear a mask just to make everyone else comfortable with my illness. Maybe I'm wrong? He won't accept that I cannot work, he believes marriage should be 50/50 always no exceptions and I am not meeting the requirements. I sometimes think I'd rather wake up everyday alone than feel this kind of guilt and hurt all the time, some days I wish/hope/plead to just bite it while I sleep so I don't have to feel one more damn thing.
 
Yeah that sound exacly like my wife was before she left, my fibro settles in my right hand a lot and being right handed it was the first thing that made working(I was a factory and resturant worker at the time) too difficult and a year later I couldnt even work anymore.......its a real kick in the ass to literally not be able to do somthing you could not that long ago......even worse when the person who vowed to stay with you through sickness and health had there fingures crossed! But if you can work it out you should sense she left I've been in 3 terrible relationships(one a girl beat me broke my nose) when your disabled in some way horrible people zero in on you like a sniper because your easy to emotionally and physically control(or that what they think) I also still deeply miss my ex wife despite all that happened she was more then a wife she was my best friend and the last one i've had so far.
 
I like to keep positive through life, I have only had CF & FM for about five years. My husband has AS (a form of Arthritis ) he's had this for over 20 years and is in constant pain. I have had some terrible times with his AS trying to help him through his pain, I look at my self and think that he is much much worse than me. I know it's not nice to say but it's a fact of life, no matter what your ills are there always someone in more pain. I totally sympathise with you as what your going through is very much the same as my hubby and I went through. We are still together and in love after 34 years, we support each other through our pains. One day your find someone that will understand and love you for what you are and be happy.
Cannabis is a depressive drug and although you thing it it's helping, it's only making your worse. There are many other ways to get of to sleep, like doing a puzzle, reading or working on the computer these things help me. You need to find something that will help you.
You could try joining support groups for FM or even a hobby class, it will help you in so many ways, you need to get out there and find some new friends to improve your quality of life. Having a laugh with friends and enjoying their company could help you to relax more.
 
thank you for your reply, the cannabis is the only thing tht has worked(been on tranquilizers even when I was a kid after 7 days without sleep was getting dangerous, insomea isnt just oh i cant sleep ill do a puzzle and with the cfs its a living nightmare) so I cant do anything about that......really wish I could, also every drug I try has such horrible side effect(soemtimes worse dpression then cannabis can cause) I take it with my actual doctors consent and my rheumy suggested it after the pain clinic wouldnt fill my percecet anymore(also i jump from sativa to indica, sativa can feel like a stimulant and is great for cfs, but CBD doesnt even get you high and thats what i look for). I thank you for your kind words, just wish I could be upbeat like you seem but I've never been that way, wish when I thought of 30 years from now it didnt look like torture lol
 
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Hi Mojo!

The pain will never be completely gone. The thing I try to remember is I will always have this pain but it can be brought to a level I can handle it on most days. I do use marijuana tincture, only when a flare is really bad, and it helps. I disagree with Ragpuss that it makes things worse. I only take it before bed because I can't function very well once it kicks in and it makes me sleepy. When I have a night that I can't sleep, I get out of bed and take a warm bath. I read or do something quiet so my husband can keep sleeping. I will not take sleep medication (I don't like the "hangover" affect. I meditate a lot, keep a journal on my computer (it hurts when I have to write with a pen) sit in the sunlight and soak it up etc. I am 50 now and have had this for over 20 years. I am thankful for my good days and I am gentle with myself through the bad days. I am glad you were able to vent here. It is so important to be able to get that frustration out! Gentle hugs to you!
 
OK I gave up the pot. Wasn't helping anymore. So I went to CBD and Kreatom. Works to leaves the pain. Stops me from crying. Sorry no high. Pot does bring down the anxiety. Witch reduces my pain. Try the meditation. Besides if your in jail. The pain is really going to be bad. Just a thought.
 
Thanks two you both, I have a Red Card so no worry with the police or anything. CBD is really the best just hard to find. I do feel better now its just a long road to look down.
 
Mojo, private msg me at I can give you a website to get the cbd in many forms. I like the salve best.
 
Hi Pita,
Everyone says I am up beat and glass half full kinda person, but those who live with me know I can very much be a glass half empty!
I have had a deal with death since I was 16 and that is I will fight death as hard as I can, until nothing in life is worth living for,then I will walk into deaths arms... It's my fail safe, even me and my hubby have a pact with death, we have no kids or family who care about us, so we have a pact to go together when we both feel there is nothing left for us... Yes we both have bad days, yes life sucks most of the time... But then you hear a spring bird singing for its life , sat high in the plumped up branches of a blossoming cherry tree, with a deep spring blue sky, and your spirit fire up inside,and you would give anything to live a hundred springs to hear that little birds song... Everyone has something in there lives that sparks this emotion, I have many this is just one of them, others include a child's laughter, the smell of rain on a hot pavement, the first snow of winter making everything look so clean and pure, I could go on and on.... All them moments carry you through the ruff bits of life, and just when death thinks it owns you, you pull away from it to live another day, but you know he is a good friend and will wait till your ready.
I don't sleep all night, then I sleep the day away, then I maybe awake for two days, then asleep for a week, but never feel refreshed... And during the winter months I hibernate in bed, taking pills for the pain, and just keep warm. Winter for FMS /ME sufferes is murderouse, and a deep seated depression can set in, I have learnt to stay positive through this time, and keep busy as possible, even if it's just watching loads of T.V, anything to keep my mind of the dark and cold... As the days get lighter,I'm feel the dark mood start to lift, and I get a little more energy to get up for a few hours, and potter about.
One thing that might help you is a SAD lamp..? Might be worth looking into seasonal affective disorder...
As for the drugs, it's not something I would try, I stick with my painkillers, and a pain killing gel that you rub on the skin and it gets to the pain quicker...
I do find meditation very good as well as the EFT...? Look on YouTube for this, is very effective and free!
Sorry your wife left you, some people just can not cope with illness, but I feel sure that you will meet someone else, and that would give you a big boost, try some dating agency's, be truthful from the start about your condition, that's what I did, and I met and married a wonderful man, we have been together ten years, and I was like you, but it was my X who walked out on me, but it is what it is ... Learn and move on and up... Good luck x
 
You know your right winter is always the hardest part of the year and this year in The mountain states has been one snow storm after the another, lol
 
It's sad how many of us loose ppl because they just don't understand our pain.i often fill like I've dug this big hole and just when I think I can't go no lower someone throws me down can shovel and says get digging.my brother and his wife made a pact and there both dead now, so no matter how bad I feel I can't put my mother and father through that again.
I can't see me ever finding real love with this illness not unless I meet someone with fibro to.latly every day feels like winter to me.
 
It looks like there are several on this thread that are new to the forum. Let me start by saying welcome. I have found this forum very therapeutic and informative....

I have always been a half-full person. I don't mean the unrealistically, bubbly and annoying kind of half-full person. I am a pretty positive person by nature. I was very competitive in sports and when others gave up, I would fight to the end. My mom always says I wear my heart on my sleeve and I would fight to the death to support something or someone I believe was wronged. That said, this illness has gotten to me. I can usually regroup, but it has gotten to me, as it has all of you....but I refuse to have it beat me. I have dealt with pain since I was a teenager. Playing sports, I had to push aside pain (always seemed to twist my ankles) and play without focusing on the pain, but on winning. If I misbehaved, I always owned it and took my punishment without whining or complaining. Yep, that was back in the day of spankings. My parents were always loving and fair. Even as a kid, I felt it was for me to be the same back.

My issues have progressively gotten worse, probably over the past 10 years. I was a manager in a government position and had worked for the government almost 30 years. I was hired young and worked hard to do good work. I believe I was the only manager in the agency without a degree. I have been married twice, with the first husband, my best friend as a kid, cheating on me. I was literally crushed. I didn't know if I would ever find someone I could trust and be happy with. Well, I just celebrated my 18th anniversary in January, been together almost 23 years. Don't give up on finding a partner.

I had been missing more and more work over the past 5-7 years because of my illnesses. It seemed like about every year or two something new would crop up, starting with the pain in my back, then my neck, then spasms in my back, hip pain, fibro pain, fatigue, colitis, IBS, daily headaches with migraine spikes, etc., etc. I always felt guilty when I missed work and tried to work harder when I had good days. Some managers were not supportive, but because I always did good work, they would just stay silent. In October 2013, I suffered a heart attack. I was 49. My life went downhill after that (I believed). I developed anxiety and true depression. I tried to continue to work, but started having worse fatigue and struggled to get up on time, or work the entire day. I started working part-time with the support of my boss, but I still failed to adhere to the schedule because of my health.

In January of last year, I met with my counselor. She was very compassionate. She told me that I needed to take time to mourn the loss of who I was and I had to come to embrace who I am now. She was the one who told me I shouldn't even be trying to work. It was too much for me. You see, I was also passing out a lot. Because I would push myself to work, there were days that I would have to pull over and I would literally pass out. Or, I'd be working and I would break out in a sweat then get weak and have to go home.

In March, my 25 year old son blew up at me and called me lazy, crazy and a few other choice words. I was always his rock. I volunteered when he was in school. Whenever his dad would blow off his weekend or his night, I just gently redirected the plan so my son didn't feel unwanted. My heart broke and my health deteriorated further. I didn't think I could afford to give up my government job because I was the major breadwinner, my son didn't want me, and I was trying to pick myself up after a life-changing event.

In July, one of my physicians wanted me to take a month off. I did, and it was gradually extended to another month, then another month. I started working the numbers and applied for Social Security Disability (I didn't qualify for SSDI). I discovered that if my husband and I reprioritized, we could survive. What I also discovered was the unwavering support of my playboy hubby (He worked to play and didn't always see what needed to be done around the place, which sometimes was a bone of contention). He has become my supporter and my rock. He encourages me to slow down and take a nap. He works out of town 4 days a week. If I can't do the dishes or pick up around the place, he comes home and just takes care of it. When I accomplish something, he texts me a message congratulating me. The one good thing that has come from all of these horrible ailments is that my husband and I have never been better. You all will find that right person. The one who supports you for who you are now. Give yourself a break. Life isn't always fair, but if you believe and behave in such a manner, life will be better.

When I applied for disability, everyone would tell me, "Nobody gets it the first time, nobody, so don't be disappointed". My response was always, "Well, I'm competitive. I'm going to do everything I can to ensure I am the one who does get it the first time". I won't bore you with what I did, but suffice it to say, I did it in January.

Believe in yourself. Start looking at that glass half-full. Why not? Nobody else will for you. What do you have to lose? I wish you all the best and send gentle hugs.... Terbaer

p.s. Sorry for the length of this. I hope the read isn't just boring, but helps to pick you up just a little.
 
Thank you for your response, yes the shovel totally and I think it just makes it even harder to trust and love people your self because you know everyone has a limit.....too the next response thank you too, yep work can be the hardest thing totoally changes the way you think about your own future for sure.
 
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