Fibro and CFS - anybody else?

[Imadeyouup]

Hey folks

I thought i would reach out over on this forum as i have both fibro and CFS both conditions I've had since 2010
both diagnosed within weeks of each other - I can't describe how awful i felt when i heard the words from the doctors at the hospital i knew of these illnesses because my mum has them both as well and the doctors think I took them from her.

both these illnesses and other illnesses have brought to this forum slowly but surely things have gotten worse and worse and I'm becoming more limited in what i can do and there's things i want to do so badly like days out with friends or nights out with friends or going on short brakes away from home with friends but because i never know how I'm going to be feeling from day to day it makes it nearly impossible for me to plan these types of things - what hurts the most is the face that before three years ago I never went out i had no friends and nobody could be around me now that people are in my life i want to be able to go out with them and enjoy like I've always wanted, my friends are great and understanding of my illnesses and know that i have limitations but i don't want to go out with them and having thinking they need to babysit me because i want to go out and enjoy myself like they do and forget I'm ill.

Ach it just seems like its one thing after another with no let up in sight i finally free myself of my abusive past only to be hit with more illnesses and something else to work through i wouldn't be lying if i said i was exhausted of the ride and wanted to get off but sadly there is no cure and very little to no treatment for fibro and CFS - that makes it hard as well because I've been given a life sentence in my body i feel so sorely is like a prison. I am angry at my body for doing this to me and hate it so very much.

Thanks for reading.

 

[Brian777]

Hey Imadeyouup, welcome to the forum. I'm sorry you're going through this after getting free from the abusive relationship. Maybe you should still go out with your friends, to the events you think you can handle, they sound like they're very understanding and supportive. I believe they'd be happy to have you along, helping others makes people feel good and it sounds like they want you to be with them and a part of their lives. I'm sure you would feel the same about them. Take care and enjoy the gift of their friendship.
Brian

 

[SillyOldBear]

@Imadeyouup. Sorry you are struggling so much with illnesses. Life certainly is NOT fair. But then I guess we were never promised that. I am thinking that by CFS you are referring to chronic fatigue syndrome. I have a pen pal who was devastated with that. She contracted it so many years ago that no one believed it existed. That is was all in her mind. That, and heart problems make it very hard for her to get around. She spends a lot of time on the phone and has friends who visit. She lives about 3000 miles from me, so we have never met in person.

I have severe digestive issues that cause a lot of pain and, shall we say "unpredictability". I have to make sure I know where the bathroom is and that I can get to it quickly and for long periods of time. It is a pain in the butt! No joke intended. But as long as I know I can get to a bathroom, I can still get out. Although I do carry a change of clothing in the car or backpack. So, I agree with Brian, get out when you can. It sounds like you have friends who understand. Just be sure you can get home if you need to, or have access to a place where you can rest or get away. Just please, work to beat the diseases, rather then letting them beat you.

 

[Imadeyouup]

Hey Imadeyouup, welcome to the forum. I'm sorry you're going through this after getting free from the abusive relationship. Maybe you should still go out with your friends, to the events you think you can handle, they sound like they're very understanding and supportive. I believe they'd be happy to have you along, helping others makes people feel good and it sounds like they want you to be with them and a part of their lives. I'm sure you would feel the same about them. Take care and enjoy the gift of their friendship.
Brian

Hi Brain
and thanks for welcome

I'm sorry to I'm sorry that these illnesses knock me for six most days now I'm having a bot of flare with them at the moment and its knocked me down and im struggling to see an end
they both flare and settle down it could be weeks or months
before I'm over being sicker than normal
i have had night and days out with friends and its been completely worth it we drink and play games and have a good laugh and for just that time together i feel so much better within my head because I've done something outside my illnesses and for that day they didn't beat me.
The fibro makes it so I'm in constant pain with strong pill killers it controls it so the pain doesn't go completely out of control but it never goes away
I've found medical cannabis to be useful in helping me through bad phases and use it so i don't flare up after I've had a day/night/weekend out/away
it helps me recover quickly and keep muscles relaxed and lessens the tiredness so that's something I'm grateful for that.

I do plan on taking a short holiday for my birthday in April I've been planning it for six months I'm going to be going to New York City for ten days with a very good friend of mine who is also disabled
we've been going on trips for years we've known each other since college (15 years) so we really know each other i help him and he helps me.

It's not all bad It's just have to remember that just because one thing is bad doesn't mean everything is bad.

Thank you for replying.
Malachy

 

[Imadeyouup]

@Imadeyouup. Sorry you are struggling so much with illnesses. Life certainly is NOT fair. But then I guess we were never promised that. I am thinking that by CFS you are referring to chronic fatigue syndrome. I have a pen pal who was devastated with that. She contracted it so many years ago that no one believed it existed. That is was all in her mind. That, and heart problems make it very hard for her to get around. She spends a lot of time on the phone and has friends who visit. She lives about 3000 miles from me, so we have never met in person.

I have severe digestive issues that cause a lot of pain and, shall we say "unpredictability". I have to make sure I know where the bathroom is and that I can get to it quickly and for long periods of time. It is a pain in the butt! No joke intended. But as long as I know I can get to a bathroom, I can still get out. Although I do carry a change of clothing in the car or backpack. So, I agree with Brian, get out when you can. It sounds like you have friends who understand. Just be sure you can get home if you need to, or have access to a place where you can rest or get away. Just please, work to beat the diseases, rather then letting them beat you.

Hi @SillyOldBear

No you're right we were never promised an easy life.
Yes I mean chronic fatigue syndrome...It can really floor you I remember before I knew what was wrong with me i had had a really bad flare of CFS and ended up having to move back to my parents house as i was bed bound with it for months when i finally got to the hospital appointment had tests and spoke to the doctor a few months later he asked if CFS was in my family a tall and yes my mother has had it for 29 years and he said well you have it to now I couldn't believe it I had saw my mother go through hell and i know whats waiting for me and i'm so fearful she barely made it through - it changed her as a person as well she used to be so active and now shes lucky to get the house once every few months she has my dad to help her with things and i try to help as well.

The thing happened to my mum some doctors told her to get over it that it was all in her head she was outraged it made feel very invalidated when she what she was going through was and is so genuine.
I'm so sorry this happened to your friend as well.

I also have IBS and that bad as well and i need to be close to the toilet or know where one is in case of the fact that i need to go urgently because it just does come on you very quickly and you need to turn around and end right for the toilet before you soil yourself - i also take a change of clothes with me because its happened to me before when i didnt get to the toilet quickly enough it just let loose it was really embarrassing.

Thank you for replying.
Malachy

 

[Brian777]

Hi Malachi, that's good that you've found something that helps with the pain and great on getting out and doing things. You have a good attitude by not letting it beat you, have a great time in New York.
Brian

 

[Imadeyouup]

Hi Malachi, that's good that you've found something that helps with the pain and great on getting out and doing things. You have a good attitude by not letting it beat you, have a great time in New York.
Brian

Hi Brian and thanks I try my best to take everyday as it comes - lately i've been feeling really run down and more tired than i normally would feel i;m guessing its a flare i'm going through probably kicked off by some personal family problems we've been having that are aimed at me and my being transgender, some people think it's OK to treat me like i'm lower person of society because they don't like what i'm doing with my body and over all have judged me to be a pathetic loser - it seems strange to me that this person who is emotionally abusing mme for being trans is the person who sexually abused me all those years ago i guess he think he still has a right to walk all over me. So yes i think right now i'm having a flare because of that but i also thought my life would be more than just illnesses and trying to make it through each day without feeling any worse dare i say it but i wanted more at one point the mental health from my past was triggered by my abuse but this time its just my health that really gets me down i knew i could learn to get over my past and leave it there but this, this is with you everyday and is the on constant in my life , as sad as that is. I do try my best but some times my best isn't good enough and i feel guilty for letting folk down because of it. Sorry for the rant.

Take care
Malachy.

 

[DrownedFishOnFire]

Wow reading this just now. It sucks major. Now the adult diapers those days are really thin and no one knows the wearer is wearing them would that give you a more sense of freedom, peace and security knowing if you cant make it in time it wont be as embarassing when an accident happens? Nothing embarassing about them. I view them same as I do with female hygiene products just a necessity even older females have pads to absorb some of the urine that's let out. Please don't be offended but wanted to give you an idea to make it more bearable.

Take Care

 

[Imadeyouup]

Wow reading this just now. It sucks major. Now the adult diapers those days are really thin and no one knows the wearer is wearing them would that give you a more sense of freedom, peace and security knowing if you cant make it in time it wont be as embarassing when an accident happens? Nothing embarassing about them. I view them same as I do with female hygiene products just a necessity even older females have pads to absorb some of the urine that's let out. Please don't be offended but wanted to give you an idea to make it more bearable.

Take Care

No not offended at all its a good idea and its something i've thought about in the past.

 

[PhoenixFailed]

Hi! Sorry I am only seeing this now. I have Fibromyalgia. I have really struggled at times and during flare ups I have had to go on medical leave. I cannot imagine also having the label of CFS. I am sorry you are going through this.

Earlier, you mentioned that there are no good treatments. The choices are limited for sure. After tring a number of medications, I was put on Lyrica. That along with a muscle relaxant. Has been tremendous for me. I also find staying active helps. I resented the advice from my doctor at first, because it felt like the very last thing I could do. However, when I was on leave, I started with warm pool therapy and built from there. I feel like my motivation to get out can be low at times, but always pays off.

 

[Imadeyouup]

Hi! Sorry I am only seeing this now. I have Fibromyalgia. I have really struggled at times and during flare ups I have had to go on medical leave. I cannot imagine also having the label of CFS. I am sorry you are going through this.

Earlier, you mentioned that there are no good treatments. The choices are limited for sure. After tring a number of medications, I was put on Lyrica. That along with a muscle relaxant. Has been tremendous for me. I also find staying active helps. I resented the advice from my doctor at first, because it felt like the very last thing I could do. However, when I was on leave, I started with warm pool therapy and built from there. I feel like my motivation to get out can be low at times, but always pays off.

Thanks for reply

Hi there - I'm on gabapintine for my fibro and also strong pain killers - I might have try to see about a muscle relaxant as i'm having muscle spasms all over my body - what one have you found works?
Do you find it works well for you?
I do go to the gym twice a week and do gentle exercise.

Sadly i still feel the same way I'm sick of being sick its been one thing after another with my health - i'm just sick of it to be honest.

thanks for your kind words
Mal

 

[PhoenixFailed]

I was on Gabapentin for a while, and it made it more manageable, but it wasn"t perfect. Lyrica made me remember what it felt like before I was diagnosed. For muscle relaxants. I was on Baclofin (sp?) and it worked for a while, but I think my body got used to it. I am on Orphenedrine now and that is a good match for me.

I try to be active each day, but yesterday I ran for the first time since I had foot surgery and I WAY overdid it and am paying the price today. Ugh! It is a frustrating illness.

 

[Imadeyouup]

oh my gosh im so sorry i've not replied to this yet im terrible i know!

i'm going to have a talk to my doctor about getting some more meds added into my life because this can't go on forever and i need to feel some kind of relief from this all
will have a wee google at the meds you said about and see if its a good idea for me or not thanks again for replying o my messages you have been most helpful indeed.

 

[Cali]

I have this too, had the fibro part back in the 80's when they were calling it polymyalgia. The CFIDS caught up in the 90's, and now I am 100 percent disabled and unable to leave the house most of the time. Doctors around here don't take it seriously at all, and won't give me pain medication. Sorry I can't write more now, I am feeling to awful.

 

[Imadeyouup]

I have this too, had the fibro part back in the 80's when they were calling it polymyalgia. The CFIDS caught up in the 90's, and now I am 100 percent disabled and unable to leave the house most of the time. Doctors around here don't take it seriously at all, and won't give me pain medication. Sorry I can't write more now, I am feeling to awful.

Hi Cali im sorry to hear you have this awful sickness as well - I can relate to you wanting to hurt yourself because of it i've been there - i'm sorrythe doctors wont take any notice of you thats terrible way to react to someone whos clearly in pain - I really had to push my doctor to give me the help i needed but it wasn't a 100% effort and i'm still in pain because like you they think its all in my head!

That's okay if you feel to bad to write here I understand there days and days go by where i don't get on either.

 

[Cali]

One of the things that pushed me to edge this time was, after waiting a long time to see a pain specialist he basically downplayed my pain. Even after I told him I am mostly housebound because of how the most small things can bring on massive pain. I recently found out that I have small, benign tumors on my spine and yet the doctors have taken no notice of them or even entertain the idea that this might be causing my back pain. I feel rejected and invalidated by all doctors now (this has been going on since last December) and they won't give me pain medicine because they think everyone is a drug addict which in my case couldn't be further than the truth.

 

[Imadeyouup]

One of the things that pushed me to edge this time was, after waiting a long time to see a pain specialist he basically downplayed my pain. Even after I told him I am mostly housebound because of how the most small things can bring on massive pain. I recently found out that I have small, benign tumors on my spine and yet the doctors have taken no notice of them or even entertain the idea that this might be causing my back pain. I feel rejected and invalidated by all doctors now (this has been going on since last December) and they won't give me pain medicine because they think everyone is a drug addict which in my case couldn't be further than the truth.

I know exactly how you feel i felt abandoned by my last doctor so i switched doctors and finally am getting somewhere but yes assuming that you are a drug seeker is just wrong in my eyes - you should be bale to access the medication that you need to help with your illnesses there oath says "first do no harm" and by the sounds of thats actually what there doing in your case.

 

[Cali]

You are right about that! I can do nothing about it either; it would be different if they had been treating me and then stopped, because I could probably prove harm but they won't even begin to help me. I can go along with it for awhile, then I get tired of being treat like crap and as if my life didn't matter. I may no longer be able to work, but I am still worthy of trying to maintain what little quality of life remains!

 

[Kiba]

Sorry I didn't have the time to focus enough to read everything. But I also have Fibro. And I know it really sucks and can be extremely depressing. I wouldn't wish anyone to deal with it..

 

[justrob]

Thanks for reply

Hi there - I'm on gabapintine for my fibro and also strong pain killers - I might have try to see about a muscle relaxant as i'm having muscle spasms all over my body - what one have you found works?
Do you find it works well for you?
I do go to the gym twice a week and do gentle exercise.

Sadly i still feel the same way I'm sick of being sick its been one thing after another with my health - i'm just sick of it to be honest.

thanks for your kind words
Mal

Savella worked for me (Cymbalta is in the same class of drugs). My doctor said it helped his other Fibro patients as well. I no longer take it, all my brain problems were cured last year, no more pain. One theory of the cause of fibromyalgia is the over production of norepinephrine, that is why drugs that moderate norepinerphrine help.

BTW, every doctor I had since the diagnosis has told me that it is a woman's disease