Lonely

[Jenny14]

I have been diagnosed for over a year now, I cant accept diagnosis and cant cope with the constant pain, I find people also don't belive in fibro and look at you like your using it as excuse not to do things or looking for sympathy so I never mention it and just struggle in my own head, its so lonely

 

[sunkacola]

Jenny, you posted the same thing twice, and I suggest to you that you only post once because then all your replies are in the same place. Be aware that at first when you are new here it might take a little while for your post to be reviewed and approved.

There is one way you have to accept this situation you are in and one way you don't. You do not have to accept it in the way of giving up and letting it ruin the rest of your life. There are many things you can do to help yourself.

You do have to accept that this is your reality right now, because without accepting that you cannot take the steps you need to take. Energy spent fighting reality is never useful because it wastes energy that can be put to doing something that might change the reality. And you actually can change this reality. There may not be a cure as such but things can get better.

We all know how lonely it can feel. but please don't think you are alone. We are not there with you in person but we are in spirit, and we want to help if we can.

It's common for people to say or do diminishing things, like not believing you, and that is terribly hurtful. All you can do is to remind yourself that you know what you know...and you know that what they say is not true. If it is someone you can remove from your life, that might be what is best for you to do, if they won't listen to you or if they are hurting you. You have enough on your plate with this, you don't need anyone in your life who makes it worse!

there is a post pinned to the top of the General forum that has a lot of good ideas for things you can try to improve your situation. I suggest you read it and see if there are things there you can try. No one is likely to do this for you, so you have to do it for yourself.

Most important, take heart. this is not a death sentence and you may not always feel this bad. Hang in there and come here to us if you have questions or need help to deal with something. We are here for you.

 

[Jenny14]

Thank you, I didnt know i posted twice!!
It is actually my best friend who has the opinion its not real and says its menopausal.
I dont always feel this bad, but this particular episode has lasted longer than all the others and standing at work is killing me as its always my legs that are the worst.
Back in Jan, I was doing pilates and moved onto some cardio and felt great but then my back went and just went downhill from there. I cannot do anything at present it hurts way too much
I'm constantly asking for more painkillers from Dr's and finally they increased yesterday
I will check out the info, many thanks for your reply. It means alot

 

[sunkacola]

Please be very, very careful with the pain medication Many of them are opiates and those are highly addictive. If you keep taking higher and higher doses, eventually they won't work at all, or else you will be addicted and have to go through horrible withdrawal unless you want to be dependent on them the rest of your life, which is really not a life. Being dependent even on non-addictive medication is not the best way to manage things. You can have a life without pain medication, except for when things get really bad and nothing else is working.

You can work back up to the pilates and cardio if you go at it very slowly and carefully. If you don't, then you may never get back into the shape you were in. Of course, you should have doctor supervision and approval before you start back at it so you don't hurt yourself. I just want to encourage you not to think that is gone forever.

As for your best friend, if you two are really close and have a strong friendship then sit down with them and explain your situation and how it feels to you when they say those things to you. Let them know that if they say it's not real they are hurting you, and that you think it is reasonable to ask them to stop. Ask them if they can be supportive of you instead, and if they are willing to learn more about FM so that they don't think it is imaginary.

If they are truly a friend who cares about you, they will want to help you and not hurt you. If they refuse and continue to hurt you, I would suggest you ask yourself whether this person really is a friend to you or not.

 

[Jenny14]

Hello and thanks for reply, the choice i face everyday is painkillers or not go to work. Most of my pain is my legs and I stand all day at work so I wouldn't be able to without them. I'm probably already addicted. There is no other choice.
I keep trying gentle pilates but at the moment my joints are too bad and injured my back, I will keep trying.
I've been awake from 3am with leg pain and gotta go to work, everymorning I want to give up

 

[Forgetmenot]

Hi Jenny ,look I can’t add much to what sunkacola has told you already ,but your not alone ,everyone with this suffers the same .we all have pain ,sure it’s in different places ,some of us have pain that moves .legs a few days hands the next.but your not alone .come in here any time and off load.xxxx

 

[Baseballmom]

Hi Jenny. I have been dealing with this too for just over a year now. I found a functional medicine dr that uses LDN. I have been on it for about 4 months and would say that I am about 90% pain free. I still have some aches each day but not unbearable. Sometimes I get flare ups but they're more manageable. People that do not understand can cause you stress, which in my experience makes the pain worse. Medical cannabis is great for sleeping too which is another majorly important piece of pain management. I am just getting back into light work outs, but it takes time once your pain is managed. Maybe it's worth a shot to go with one of these treatments and be rid of the pain killers. Good luck

 

[Affinity]

Hi Jenny. I have been dealing with this too for just over a year now. I found a functional medicine dr that uses LDN. I have been on it for about 4 months and would say that I am about 90% pain free. I still have some aches each day but not unbearable. Sometimes I get flare ups but they're more manageable. People that do not understand can cause you stress, which in my experience makes the pain worse. Medical cannabis is great for sleeping too which is another majorly important piece of pain management. I am just getting back into light work outs, but it takes time once your pain is managed. Maybe it's worth a shot to go with one of these treatments and be rid of the pain killers. Good luck

I am also under the treatment of a functional medicine doctor who has me on LDN (low dose naltrexone) among other things since February and my pain levels are also greatly improved. I still have a lot of fatigue but that has also improved quite a bit as well.

If you are feeling lovely and misunderstood I would encourage you to find a therapist to work through these feelings with. I have one that specializes in working with people with chronic pain and I find it's much better to have someone to talk to who is trained in these areas than trying to convince someone who has no experience with it what I am going through. I usually don't talk about my stuff with regular people because I find it only makes me more upset so I can relate to what you are saying.

 

[Jenny14]

I was started on amitryptiline but after a year of keep increasing the dose the dr changed to duloxetine, I've tried all the painkilkers but only ones that seem to help us co dydromol 20/500. I can't function without them
Dr has referred me to pain management
I won't talk to people, they just not interested and just get fed up with the moaning. Don't want to loose friends from being miserable

 

[sunkacola]

I was started on amitryptiline but after a year of keep increasing the dose the dr changed to duloxetine, I've tried all the painkilkers but only ones that seem to help us co dydromol 20/500. I can't function without them
Dr has referred me to pain management
I won't talk to people, they just not interested and just get fed up with the moaning. Don't want to loose friends from being miserable

It is true that you can lose friends by talking too much about your physical problems. And people who are not really friends but more like casual acquaintances will be gone even faster.

If there is one person in your life that is very close to you and will stand by you, you might try this:
Ask them if you can have 5 minutes to talk about your physical pain and to vent. If they say yes, set a timer or look at the clock and do not go over 5 minutes. Then go back to whatever you were doing before. I have done this and it works great. The person can easily say yes, (although it has to be OK for them to say No also if they aren't prepared to listen right then), because it won't turn into a day-long thing, and you may not believe this but it is amazingly freeing just to know you are allowed to vent for five minutes. The truth is, going on longer than that doesn't help, only tends to make you feel worse. So if there is someone you think you can do this with, give it a try.