Is it me or is it Fibro speaking?

[Anaya]

Hi everyone,

I'm Anaya, I've was diagnosed with Fibromyalgia when I turned 40 a few years ago and have been in denial for most of it. I have had to deal with 20 years of being in a marriage of convenience and I blame my condition on that, my upbringing, and generally being a people pleaser. I am very hard on myself and people around me depend on me, they don't like seeing me weak and I hate myself becoming the opposite of who I was.

I often wonder, is it the pain and depression that makes me so angry and short tempered or is it just me and who I've become. I don't know who I was before and now with this condition I don't feel like I will ever get a chance to find out. I can't speak to my workaholic husband, who has so many of his own problems that I don't expect him to put me first. My young 18 year old daughter is about to move out to University God willing and doesn't need to worry about me. I've distanced myself from my friends and family because I can't give them the relationship that once was, so it's just platonic now, which I prefer.

I'm an empath and have always been a caregiver by nature, I find it hard to change my ways. I work full time so I can support my family financially and my employers are very understanding. I've been struggling a lot recently because I feel I might have adult ADHD diagnosis lurking on the horizon, it's hard to process my scrambled thoughts in a logical manner.

I have been on long term anti-depressants which I gave up because I didn't like relying on them. I use pain killers every other day but don't want to rely on them either. I do try and speak to a therapist when I can, it's so draining but above it all I find prayers help. I aim to pray 5 times a day for around 5-10 minutes and it helps to clear my head and I feel I've unburdened my worries over to my Creator. It also helps to overcome feelings of nervousness and anxieties from social norms and expectations because I can let go of the thought about 'what will other people think?' by replacing it with the thought 'as long as I aim to do good, that's all that matters'.

I'm sorry for the long message, but I appreciate you giving it a read I hope everyone finds a moment of peace and tranquillity at some point this weekend even if it's for a few moments.

Thank you

 

[sunkacola]

Greetings @Anaya .
Welcome to the forum, and please do not ever apologize for writing long posts. Write as much as you like. Sometimes it is helpful to write things out, especially to a bunch of people on the internet who don't know who you are but who share some significant things in common with you....and that's us. We are here to support you and help if we can.

I know I can fully relate to what you are saying about not knowing who you are these days, not who you thought or want to be, not who you used to be, and not knowing exactly what it is that puts you in that place. I have experienced and am currently experiencing all of the same, and I'd bet that many others on this forum can also understand. I also get very angry at times, and don't want to be. I think it's natural, because from what I know, people with chronic pain of all types very often have to deal with feelings of anger, frustration, and despair. To say it is draining to have this condition is perhaps an understatement.

Like you, I am always trying to put on a good face. I do not ever complain to others, nor even talk about how I feel. I try my hardest always to be polite and kind and respectful to everyone, and sometimes because I haven't slept for days, am seriously depressed, in constant severe pain and feeling frustrated because of it, on top of having brain fog so my thinking isn't even as quick as it should be, I don't live up to my personal expectations in that way. When that happens it can increase the depression and feelings of being worthless because I am not who I used to be or want to be. I very rarely write about this on this forum, but I want you to know that there's someone who truly gets what you are saying even though our circumstances are different. Falling into self-criticism is so easy.

But I think it's important for us to remember to cut ourselves some slack. No one is perfect, including those who do not have the chronic conditions that we deal with daily. It's important for others to cut us some slack at times, too, if they can, and it's OK to ask for that if it will not just bring you more trouble.

Most of all, we need to try hard in the face of criticism, whether from self or others, to stay strong within ourselves. If you are doing the best you can, no one....including yourself..... can ask for more. Self-hatred, while easy to fall into at times, only brings with it more stress, which will exacerbate fibro symptoms, so we need to try hard to move past it and remember that none of us asked for this, nor do we "deserve" it. I don't believe the universe runs on a "merit system". Bad things happen to good people and vice versa. We all just have to do the best we can with what we've got in the moment, and find our own ways of managing it the best we can each moment.

I hope this forum turns out to be something you find useful. Lots of very good people here who want to help.

 

[BlueBells]

Hi @Anaya

Welcome to the forums.

In many ways I'm a lot like you, a bit empath, messed up marriage I'm now thinking much of the problem a mix of fibro and upbringing, that is, I think I was 'trained' to be a servant, which works well for an empath and people pleaser

I'm an empath and have always been a caregiver by nature, I find it hard to change my ways. I work full time so I can support my family financially and my employers are very understanding. I've been struggling a lot recently because I feel I might have adult ADHD diagnosis lurking on the horizon, it's hard to process my scrambled thoughts in a logical manner.

I found out decades ago that I have mild ADD, always have had. As far as thoughts , well , it's like trying to get all the ducks in a row, but still need to find them, as they are roaming in the grass somewhere

Please interact on the forums, it's the best way to get support, and in doing so, you are supporting and encouraging others.

But I think it's important for us to remember to cut ourselves some slack. No one is perfect, including those who do not have the chronic conditions that we deal with daily. It's important for others to cut us some slack at times, too, if they can, and it's OK to ask for that if it will not just bring you more trouble.

@sunkacola really puts that well. Learning how to care for and nurture ourselves is, I think, a bit alien for many people.

Actually, I can relate to most of what you both have written, but my brain is pretty pooped at the moment, and all the ducks are wandering off over the hill again,

Take care, and I hope the little fibro gremlins give you a bit of a break . Hugs

 

[Anaya]

Thank you both @sunkacola and @BlueBells.

It helps to know how others are dealing with it, especially as I don't know anyone in person who is. Thank you for allowing me a platform where I can express how I feel, without judgement

The anger, the vivid often scary dreams (when I do eventually fall asleep ) the ducks lost over the hills (I found that was a good and funny analogy), and then the pain that I thought, maybe not today, is there, in full force telling me not to wake up, to go back to that dreamland, where it's scary and confusing but at least there's no pain there. It takes so much effort to push past that feeling, I'm sure you all know, to get going.

Thankfully the stiffness reduces as the day goes on, and I don't know if any of you have also experienced a feeling of hesitance, of not wanting to turn in for the day, because you're not ready for it to happen all over again? Maybe that plays on our minds, like the pain has taken away our freedom to indulge in some spontaneous activities that we would have been able to do before but now we can't because we have to be careful of not overwhelming ourselves. The weekdays go by and the weekends come and are spent by resting, maybe a quick- catch-up and then we do it all over again. I have guilt when I've not done anything productive over the weekend, especially as it's a bank holiday weekend too.

When I talk like this, my sister is in my head telling me that, that is normal. Most people feel this way at our age, and that we've just got to get on with it. She's not wrong, yet somehow I feel she's not right either.

My therapist once told me, that we have our inner child that pushes us towards certain things, things we never got to experience as a child and now that we're adults we can deliver it for ourselves. However, I think the child doesn't serve us well sometimes, and craves attention without boundaries and rules. But, we have to be kind, we have to develop healthy coping mechanisms and not let go of our inhibitions because we have family responsibilities and financial obligations. But mainly for people like us, its because we can't cope with the pain that will follow.

Thank you again for reading, and for your responses. It has meant a lot to me

 

[sunkacola]

@Anaya ...Yes. Not really wanting to go to bed because it means that morning will come and it will happen all over again, as you say....not wanting to wake up (oh please! Not yet!) because the pain will come. And it's always too early....3 or 4 AM. Sleepless nights are worse, though, knowing that when it gets light outside I need to get up and the pain that day will be worse because I haven't slept.

You put it well to say that fibro takes away some of our freedom.
For me, it has taken the freedom to be spontaneous in my activities with anyone else, and that has cost me a few relationships.
Yes, for me also the feeling of not having been productive in a day is a dreadful one for me because all my life I have been so active, always getting things done. Used to be, I never would even sit down all day until time to sit and eat dinner, because I would be always doing the next thing. Just to sit down in the afternoon felt weird to me. Now some days I get nothing done and it is very hard to think of myself as a worthwhile person when I hardly see another human being and most days only do the minimum of what has to be done, if that. I actually spend a lot of time these days just distracting myself from being in my body and in my life.

I think we can understand what your sister is saying, and of course she's right. On one level. But your sister doesn't have fibromyalgia. She doesn't know how much worse it actually is for those of us who are affected by this disability. And apparently she is unwilling to recognize how much worse it is for you, or how different it is.

This kind of thing used to make me mad. But I came to realize that people often times do not want to believe us or recognize how bad it is for us because if they did they'd have to face the fact that this is something that simply happens to people.....and could happen to them. If they refuse to acknowledge it, they can be in denial that it is real, and therefore they feel safer.

When I see someone doing that, I cut them some slack for not believing me. But at the same time, if their lack of belief leads to behavior that makes my life harder, my choice is to cut them from my life because my life is hard enough already. Not saying anyone else should do this, but it's been my choice and so far I have never regretted it when I decided to do that.

I desperately wish there were a road map of how to manage the best way, and I could maybe have spent years figuring it all out and now I could just hand it to people, but everyone has to find their own path with this thing.

 

[khaos]

it definitely sounds like the pain and mental health. you are not a bad person.

 

[evamccaully1227]

Hi everyone! I am new to this forum and I really am encouraged to hear from all of you. I have lived with fibromyalgia for about 15 years. Started off as chronic back pain from lifting patients at work, then knee pain, and just progressed to all over pain and inflammation. I take Vicodin 5mg twice a day as needed, usually with Advil. I also take a baby dose of Gabapentin 300mg twice a day, and now Effexor for depression. I have trouble sleeping, too. I didn't used to, though. Can't turn off my mind.

I moved about 3 hrs ago from across my state to help watch my grandboys. My husband retired so he is at home all the time. I had a part time job as a pediatric nurse in an office, and thought it would be easy to find a new job but it hasnt. The biggest problem is that my rheumatologist was prescribing the Vicodin 5mg for pain and I dont even take it the way it is prescribed (4x/day), but none of the docs where I live now will prescribe it. My former, almost retired rheumatologist could keep calling it into a pharmacy here, and he has, but he wants me to find a doc out here. The one I am now seeing wants me to try medical marijuana, and she gets angry when anyone asks about opioids.

I am angry that I can't keep using a med that works because it's an opioid. The pain psychologist thinks if I can get the med from my former rheumatologist that I should just do that if it helps. She even cited a study about chronic pain and opioid use where they found it was an effective long term treatment for many people. Just got my med marijuana card but haven't gone to the local clinic. Had a bad experience with an edible once so I am reluctant.

I was wondering if any of you have had any experience with med marijuana and with a story like mine... also not quite on Medicare, but I have to watch my expenses. And, sadly, opiates are much more affordable than any other treatments. Tramadol doesn't work for me. Neither does Lyrica. But I stretch a lot!! That helps me! And gardening... my happy place. I work through the pain cuz I get lost in it sometimes! Except when I can't get up from squatting and my legs burn and feet are numb. So at the end of the day I sit down finally (I hate to sit down and do nothing!) And feel the pain, and I take pain med and feel so much better. I know I will have to give it up soon. Unless somehow I don't have to...

Sorry for the really long post!

 

[sunkacola]

Hi @evamccaully1227

No worries about writing long posts here. Write all you like.

Medical cannabis has helped a great many people who have chronic pain. I use it myself as do several others on this forum. But medications of all kinds react differently with different people, and the only thing you can do to find out if something works for you is try it and see. Just because you had one negative experience with cannabis is no reason not to try it again. Starting off with a very tiny tiny dose, and then working up to a larger one if that has no effect, is the way to go. Never just eat a whole gummie or something like that at once unless you have worked up to it.

I personally think that if cannabis works it is highly preferable to strong opiates. It is not nearly as addictive, and some say not addictive at all. I personally don't think it's addictive, others will disagree and the official jury is still out on that.

But we all know that opiates like are definitely physically addictive. Now, whether or not it is justifiable to become addicted to a pain medication is another topic, and one I have written about on this forum. But it should be undertaken with full knowledge of all the possible ramifications, if so.

Some of the possibilities include the possibility that one might suddenly not be able to obtain the drug any longer due to law changes or, as you have found, changes in venue or doctor. Then, you are in a real pickle, because withdrawal from some opiate drugs, depending on the dosage one has been taking, will result in a terrible experience, possible hospitalization, and even in the most extreme cases, death.

I am not saying a person shouldn't take an opiate, or any other drug. Only that it should be done with deep consideration of all of the aspects of doing so.

I also am a proponent of a person with fibromyalgia trying all of the other things that can help greatly. these include diet, exercise, mental approach, stress reduction and other things. Effectively treating and managing something like fibro takes a many-faceted approach. You say you are stretching.........this is very good. If you have not already done so, I recommend you read the advice post at the top of the General section of the forum for more ideas on things you can do that may help.