here to vent again...

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catnel

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Well, haven't been here for a bit. It has been a very hard time for me, I am in constant pain and it doesn't seem to be letting up. I have been so nasty to everyone around me....they don't seem to get it after all these years of being around me and know what I am experiencing. I don't want to be like this but pain does something to you. My doctor wants me to go back to pain management and go back on the meds and I do not want that. They were not helping me so why go back on them. I took tramadol for years and neurotin. Now my knees have got worse and my hips... the pain has tripled. I am loosing the weight that the doctor wants me to do and I am trying to do more exercise... that is really hard when you can't move much or walk with out a walker but I am trying and the doctors keep pushing me to do more. They are confusing me more and making me feel like they don't really listen to me. I am so tired because I don't sleep and if I am not sleeping I don't wear my c-pap and there is another problem. Thank goodness you all are here... you all understand what it is like to be in chronic pain and, if I here my favorite saying " you don't look ill " how can they say that, I use a walker, I have put on weight, I go no where anymore, haven't they noticed the changes? I just need to get some sleep, I am so tired. Thank you all for letting me vent.... Fibro, IBS, Meniere's disease, osteoporosis in knees and hips and lower back and COPD are no picnic for anyone. I feel some better just letting it out. Going to try to go get some sleep. You all take care and bless you.
 

Jemima

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Hi Catnel,

Even if you're feeling like bad company at the moment, it's truly lovely to hear from you here!

I'm so sorry to hear that you're having such a hard time - you're absolutely right that pain does something awful to us, especially over time and when it stops us from ever sleeping deeply. It is so impressive that you've managed to lose weight while you're dealing with so much - what a fantastic achievement, and one that you should feel really proud of.

I think that if your instinct says you don't want to go back onto medication, then you should be able to lean into that. I feel that we often have a sense of what is or isn't good for us, and it's worth paying attention - whenever I go against my gut, I always seem to regret it! Perhaps you can put your foot down and explore alternative options - I hope so.

I'll never understand those people who don't listen, and who say things like "but you look fine!" It's just so insensitive and thoughtless - I always tell myself that the best tactic is to ignore them entirely, but of course it is far easier said than done. I hope that you at least have a few people around you who realise what you're living with. Give yourself credit for every single day - you are a warrior, no doubt.

Good luck and thank you - I hope you managed to get some rest!
 

catnel

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Thank you Jemima. I was able to get a little sleep, it was up and down most of the night but was able to wear my c-pap and that does help me to relax some.

I feel that I have to go back to pain management, the doctor said if I don't let them help me there is nothing they can do. I don't know why they think I don't want there help, I just don't want the meds....I don't like to take the meds if they are not working for me and I don't like the way I feel when I was on them. I just feel hopeless and confused.

My husband does know what I am going through but, I think it is just he feels hopeless because he can't help me with the pain. He puts up a lot with me and I hate that but, sometimes I just want him to hear me, he will say things like....maybe if you move more or lets just go somewhere and get your mind off it....well, when you are hurting so much and you can't even tell where you are hurting you don't want to move more or go places....my children are the same they all believe I need to move more or get out more and I am tired of explaining. They don't even come around much anymore and when they do all they see is their mom in bed or I am in pain and don't feel like visiting. I know they all care and love me but they don't understand what my body and mind are going though.

Thank you again for responding to me and it good to know that I have a place to vent and people that understand what chronic pain is like.
 

Auriel

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Hello Catnel, I actually love it when people on the forum vent. on my main page are reasons why I love people with fibro one of them is because they hate it as much as me .i think we should have a fibro venting day.i saw a sign in a Bridgend Tesco once it said not all disabilities are visible (I loved that) I want the people around me to understand what it’s like too when they’ve not seen seen me for a while from the pain/cfs and say things like jokingly Oh i thought you were dead! but the fact is if they’ve not got it they can’t fully understand.i actually think there should be a fibromyalgia awareness day also if someone said to you you don’t look ill when your using a walker there’s something off somewhere.
 

Auriel

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JEMIMA’S ON, HELLO JEMIMA ! ! !
 

Jemima

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I know they all care and love me but they don't understand what my body and mind are going though.
That sounds incredibly tough, and it makes sense for you to feel that way. Pain is a heavy burden to carry, and while none of us want to carry too much alone, it's so difficult when others don't get it - I often wish I could touch someone else's hand and have them feel what I feel, so that they'd understand! I'm sure, despite the challenges, your loved ones do care deeply - so often, it's just so hard to show how we feel in these moments. As for venting, us lot here on the forum are indeed here any time 🌷
 

Jemima

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JEMIMA’S ON, HELLO JEMIMA ! ! !
Hi Auriel 🌞

There is a fibromyalgia awareness day! In fact, the day is for both fibro and ME/CFS. It's May 12th - so you can put it in your calendar for next year - and purple ribbons and butterflies are used to symbolise the cause 💜
 

Auriel

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Oh wow I didn’t know about this
 

Auriel

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I knew the purple butterfly was a symbol thing cos it’s on my fibromyalgia uk letters but I didn’t know we had an actual day! is it just an awareness day or are there get togethers too? like events and things?
 

sunkacola

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Well, haven't been here for a bit. It has been a very hard time for me, I am in constant pain and it doesn't seem to be letting up. I have been so nasty to everyone around me....they don't seem to get it after all these years of being around me and know what I am experiencing. I don't want to be like this but pain does something to you. My doctor wants me to go back to pain management and go back on the meds and I do not want that. They were not helping me so why go back on them. I took tramadol for years and neurotin. Now my knees have got worse and my hips... the pain has tripled. I am loosing the weight that the doctor wants me to do and I am trying to do more exercise... that is really hard when you can't move much or walk with out a walker but I am trying and the doctors keep pushing me to do more. They are confusing me more and making me feel like they don't really listen to me. I am so tired because I don't sleep and if I am not sleeping I don't wear my c-pap and there is another problem. Thank goodness you all are here... you all understand what it is like to be in chronic pain and, if I here my favorite saying " you don't look ill " how can they say that, I use a walker, I have put on weight, I go no where anymore, haven't they noticed the changes? I just need to get some sleep, I am so tired. Thank you all for letting me vent.... Fibro, IBS, Meniere's disease, osteoporosis in knees and hips and lower back and COPD are no picnic for anyone. I feel some better just letting it out. Going to try to go get some sleep. You all take care and bless you.
Good to see you.

And of course we understand. I always try very hard never to let my pain cause me to be short with another person, but at times it happens anyway. And then I hate myself for that, but really we should all give ourselves more of a break. I tell myself: I am trying so hard to be patient with people who don't understand at times, I should show the same patience with myself if I mess up and am short or impatient with someone now and then.

To me, catnel, it sounds as if you are doing what you can, and honestly no one can ask more of you than that. I encourage you not to go back on the meds, especially if they were not helping very much or at all. Why take strong and addictive medications that can cause you harm in other ways?

You say you are trying to do more exercise, and I applaud you for that. Honestly, I have found that to be the #1 best thing to do for fibro. It's very hard, but if you do what you can do on the days you can do it, that's something to be very proud of. If someone tells you that you should do more, I guess all you can say is that you are doing your best. Do your best every day. That way, you know that you are telling the truth when you tell that to people and you have firm ground to stand on. Don't let them knock you off that ground, or make you doubt yourself. You know if you are doing your best or not, no matter what they think or say.

They are saying "you don't look ill" because they don't want to believe it, and the reason they don't is that if they don't believe it then they don't have to know that it could happen to them. If I look at it that way it allows me to understand why they talk like that. Of course, that's no excuse for disbelieving you! I simply will not discuss fibro at all with anyone who is not willing to believe what I say. I just cut off the conversation. You might try that with your family members or others.

Your husband sounds great, and you are lucky to have him. Of course he feels helpless, and no one likes that, especially men! Maybe try to have compassion for his feeling helpless, as he has compassion for your pain. But I have found that if I go and do something with someone when I know I shouldn't, it doesn't turn out well, so it would help if he understood that you don't ever say no out of anything other than just trying to take care of yourself.

I don't think anyone who has not experienced this will or can ever understand what it is like.........how can they? So I have given up on trying to let anyone understand, and instead I simply ask people to believe what I say. That's enough. And if they won't believe me, I won't talk to them any more, or at least I won't talk about fibro any more.

Come here and vent any time. We understand, will hear you and offer our support, and maybe even a bit of advice that will help. I always try to offer advice, but I know that even though my intentions are always good, it is not always helpful.
Take care of yourself.
 

catnel

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Thank you Sunkacola for responding. You hit the nail on the head with everything you said. Good to know someone out there gets it and knows what it is like with family and friends and doctors. Everyone's advice has been so helpful and just to have a place to vent and let it all out. Thanks to everyone and I hope that some of the things I vent about helps others on here to let them know they are not alone, just like all of you have done with me. I am feeling some better today, got a little sleep and that always helps. Bless you all.❤️
 

Jemima

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I knew the purple butterfly was a symbol thing cos it’s on my fibromyalgia uk letters but I didn’t know we had an actual day! is it just an awareness day or are there get togethers too? like events and things?
I'm not sure about that, I'm afraid. I'm a bit out of the loop over here in Portugal! I guess do some Googling, and see if you can find anything nearby. Who knows - perhaps you've even got support groups in your area.
 

Auriel

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Yeah they stopped local fibro groups ages ago way before covid I phoned the coordinators they said no one was turning up (which kinda makes sense) yeah I googled after last message I got overexcited when you told me there was a fibromyalgia day then I remembered after calming from my puppy-like state that you are in Portugal! I’m gonna bed now night 🌜
 

JayCS

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I feel that I have to go back to pain management, the doctor said if I don't let them help me there is nothing they can do. I don't know why they think I don't want there help, I just don't want the meds....
My pain docs were similar. I had a kind of romantically idealized image of what pain management is before I went, partly because they were warmly recommended to me. And went they started with cupping, of all things, and then one of the medics said she was a homeopath, I thought: wow, great! Then they had no other ideas than Tilidine, amitriptyline and last of all MMJ (which they applied for but then nothing happened). I think I could have talked straight with some of the docs there if I'd've realized about GABA & Co. before, but I didn't feel I had the option to stop. Not sure why they didn't try the GABA-derivatives on me, but I'm glad I'm finding my own gentler way now. They cdntve helped me with that anyway, and my sleep lab psychiatrist is a very openly thinking young guy who thinks everything thru with me.
 

Auriel

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Jaycs Is gaba short for gabapentin and co for cocodamol or are they 2 different things? I take gabapentin , puts me borderline unconscious
 
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