Hi all... I'm new here!

[ashlynn26]

Hi everyone. I was diagnosed with fibromyalgia 2 years ago. I have been sick though for 7 years. One day when I was 19 I was working and my legs just felt very heavy and started to go numb and get tingling. It was hard to walk on them. I worked at a hospital at the time and was told to go to the ER cause I almost fell over. ER said I have GERD and was having a panic attack. Then over the course of 3 weeks I could move my legs, pick my head up, my head was so heavy and hurt and I have to be carried to go to the bathroom. I was taken to another ER and they said I have migraines. A few days later I was worse and brought to a different ER. They basically said it was all in my head. I started to feel better after some time. I have all types of pain and pressure in my head, sharp burning pains throughout my body, numbness and weakness in limbs, hypersensitivity to light, sound, heat and touch. Over the years I have been tested for MS and brain tumors and other autoimmune, neurological and other diseases. Nothing has shown up from the doctors who believed me when I said I don't feel right then the other doctors tell me I'm emotional and need therapy. I have been on meds for fibro for 2 years, duloxetine and then hasn't helped. I have been on muscle relaxers and nerve medication and that doesn't help the pain. I was just put on pregabalin a few days ago. I'm hoping it helps. I used to have a life, friends and boyfriends a great job, I still had flare ups and pain but it doesn't always last this long. Last long bout I had was in 2021 for about 9 weeks. I'm over 3 months right now. I am back home with my parents and unemployed due to my illness. I haven't worked in 3 months and I'm trying to get back to my old self. I barely feel like a person anymore. I've been told to start looking into support groups for my own health and sanity for a while. I find it hard though to talk when I feel this way. I like to isolate, and I guess I've isolated too long, I talk to no one outside of my house and I'm just feeling vey alone. I'm finally ready to talk and get some sort of help or support. I wanted to discuss my specific symptoms with someone because I feel like I'm going crazy, and I really hope I'm not the only one! I know that was a lot but....Hello!!

 

[sunkacola]

hello Ashlynn, and welcome to the forum.
I can relate to a lot of what you are saying. Many of us here have experienced similar things......being told we are basically hysterical and that the pain is not real is a very common experience. Fibromyalgia is defined by being a syndrome that causes a great deal of pain and other symptoms without a direct physical cause being found by medical doctors.

While therapy can be helpful, if a person needs therapy in order to deal with this syndrome, therapy is not going to cure fibromyalgia because fibro is not psychosomatic. It is a physical problem, and has no cure or treatment that works for everyone. Most people feel dismissed by doctors who simply tell them they need psychological help, and that is understandable.

No one here will tell you that, or be dismissive. Here, you are not alone.

I also am a person who lives with a fair bit of isolation. I have been this way all my life. It came in very handy during the Pandemic because it took many months of not seeing or talking to anyone before it started to affect me! It eventually got old, but I figured I was among the fortunate few who don't tend to see other people very often by choice. There's nothing wrong with that at all if it is what comes naturally to you.

If you need support, though, it can be lonely to be a very singular person. We're here to support you, if it helps. You can post here and someone will always reply to you, although we are an international forum spanning all of the time zones, so it might not be right away.

If you want to discuss certain symptoms, feel free to do so here. You can post to the forum and once you have posted enough times you will be able to send private messages to people if that is what you want to do, and you can have conversations. No one here will be rude to you - it's not allowed, and anyone who does that doesn't last long here; as moderator I see to that.

There are a lot of things you can do for yourself to ease your symptoms and to manage fibro, and here is a post I wrote about it. Let us know how we can help.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[JayCS]

Hi ashlynn

was just put on pregabalin a few days ago. I'm hoping it helps.

Hope so too, it's hard to find meds, @sunkacola's advice post points to all the many things we can try, which'll be more sustainably successful and less suppressing than meds.

I'm trying to get back to my old self. I barely feel like a person anymore.

In my experience it's better to find what kind of a life is now better for me, and continually adapt that.
Life's tribulations can change everything, but being humans our self and personality can adapt and find a new (kind of) life, which will mean focusing on self-care. If possible including researching & trialling all sorts of treatments ourselves (with the help of forum pointers). Stopping what is unhealthy for me, so living (eating, sleeping etc.) as healthily as possible, which is often different to what we think and difficult to habituate. Then the work of identifying, analyzing and preventing my symptoms and their triggers, trialling treatments, general or specific, learning, strengthening my trust in myself, my self-advocacy.
There may be other cases, but to increase the chance of getting back to my old self I had to make getting better a full time job for over 10 months. And now a few years later I can still do everything online, but I still work on getting better 20-40 hours a week, so still a major job. For 2 years it seemed as if I can keep up a third of all of my previous life. But getting my 2nd main condition triggered started a new major job, and finally made me re-invent myself. I spose self-care itself was the foremost and deepest re-invention. I was always interested in helping others, but not myself that much. I did need to start early and got no help with improving pains and health, and was quite good, bit by bit. But now I have to put myself first all the time. If anyone phones comes to visit me/us, since a few months I need to go away after 20-30' regardless.
Trying to hold on to things we can't do at the moment will increase symptoms and delay improvement.
That doesn't necessarily mean we'll never be able to do it. If it stays important, we can find a way or a workaround. Bit by bit we can build up what we can do and the new life can incorporate some of our old life, in some cases even a lot or all of it.
But we may need to start grieving our old life early on, to be able to accept the status quo and move on and improve from there, so moving up and praps partly or fully back.

I've been told to start looking into support groups for my own health and sanity for a while. I find it hard though to talk when I feel this way. I like to isolate, and I guess I've isolated too long, I talk to no one outside of my house and I'm just feeling vey alone. I'm finally ready to talk and get some sort of help or support. I wanted to discuss my specific symptoms with someone because I feel like I'm going crazy, and I really hope I'm not the only one! I know that was a lot but....Hello!!

"Talking" online on the forums helps me a lot, because I can dose interaction as I need it, and cos I'd get on my wife's nerves even more with all this health stuff. I do sometimes overdo it, cos it means a lot to me. My blog is a way of interacting without interacting much.
My wife always wants me to go to real live people, cos she doesn't like "computers". But I (and she) would be really badly off if not for the web. And I can't - much too much strain, even if they came to me.

 

[sunkacola]

One thing that is sometimes a challenge is to be fully accepting of the fact that the old self is not attainable, if it means the self that we were before fibromyalgia came into our lives. But if you think about it, you never have your "old self" back again, even if it is the self you were six days ago, because we are constantly aging and constantly changing. This isn't a bad thing, just a fact of life. Nothing, not even rocks and mountains, stays the same.

I remember people saying in 2020 "when things get back to normal....", and knowing that the "normal" they referred to was gone forever. But we would never have a world that had never had the covid pandemic. I knew that, no matter what happened with the virus, it would change things in the world forever. And it did. Many of those changes are positive, though, and many lives have been changed for the better.

I'm no Pollyanna, and I am not saying that fibromyalgia changes lives for the better, of course. But if a person can approach life with a basic attitude of total and radical acceptance of what is in the moment, it is possible to experience all of the good that is available in that moment. Trying to get back to what I was before always resulted in failure and discouragement. Accepting how things are now and rejoicing in what I am able to do each day brought me peace of mind and an appreciation of my changed life. I'm not saying it is not still a challenge at times. It probably always will be, because I'm not an Enlightened person and so will struggle with things. And mostly my days are OK with me.

 

[ashlynn26]

I really appreciate what you said and attaching a previous post. While I do sometimes to choose to be alone for multiple reasons it sucks feeling alienated due to not feeling well. I have always been there for everyone but never had anyone to be there for me. In the last 4 months I have lost people in my life who meant a great deal to me but because my illness is so unpredictable, and I deal with it everyday people find it difficult to be there for me. I got called dramatic recently as if I wasn't in excruciating pain and doing my best.
I've been to multiple doctors who have tried a bunch of meds and my neurologist and rheumologist basically said they can't help me, and my symptoms are very bizarre and all over the place which makes me wonder if they are missing something or if they just don't know enough about fibro to understand. I've done so much reading on it, what are the symptoms, what causes a flare up, what to eat and drink and what not to. I'm still trying to figure it out.
Your post you attached made me feel better about just accepting small wins. It's hard to do nothing when you're used to doing everything for people, but I can't do it anymore. I've spent so much time pretending I was okay for everyone else's sake. I'm exhausted. I've had to learn to take making my bed or only cleaning one room a day instead of the whole house.
I'm glad I got on here. From previous experiences in life, knowing you're not alone is half the battle. Thank you!

 

[sunkacola]

You are welcome. I try to offer to others what I would have liked to get when I was first diagnosed, but did not get.

About people: the ones who leave are not your true friends. I know that sounds like a cliché, but if you think about it you will know it's true. It's nothing faulty about those people - people are good at handling different things, and if they can't handle something then they can't.

Anyone who calls you dramatic is insulting you. Don't spend any time or energy with someone who is so disrespectful to you, and don't let it get to you. You don't need the aggravation.

My way of looking at it is that I have never been known to be a complainer, and I am known to be an honorable and truthful person. So, if someone refuses to take my word for something, whether or not it is about fibro or how I am feeling, then they don't get to be my friend and I won't be theirs. This is just a bottom line. I am done with trying to convince anyone of anything. My energy is much better spent elsewhere.

So I have told people that I know full well it's hard to adapt to the fact that I might cancel or postpone something I planned due to being in too much pain to leave the house, but it is also a challenge for me to adapt to that. My real friends have had no problem adapting to this....it wasn't even a question at any time. I have fewer friends and associates now than before, but that's fine with me.

If someone cannot adapt to it, that's OK - I don't blame them, but then I won't make plans with that person any more, and the relationship is over. If they want to stick around but then to give me a hard time if I have to change plans, I cut them from my life. I have done this, and believe me it's not easy at first but it gets easier.

Now I tell anyone new in my life everything upfront and tell them to think it over before agreeing to be friends with me. And sometimes a person says they are OK with it but it turns out they aren't. So I stop that relationship. I don't give people second and third chances on this because I have learned from hard experience that people who say they will change, don't.

symptoms are very bizarre and all over the place which makes me wonder if they are missing something or if they just don't know enough about fibro to understand.

Doctors understand very, very little about fibro. That's why it's imperative that we take charge of our health ourselves and do not rely on the doctors for our well being. Doctors are good for prescribing medications, for running tests, and for dispensing some kinds of advice, for sure. I like my doctor and appreciate her. However, I know that the day-to-day of my life is 100% up to me. If I make healthy choices, I can do OK. Realizing this and finding out what things help me and learning to listen to my body have been deeply empowering things for me, which is why I always encourage people to do this.

I use medical grade cannabis for certain kinds of pain, and to ensure a good night's sleep --which I find to be one of the most helpful things in the world. It can also be a mood elevator for me, and that's important as well. It doesn't help everyone - nothing helps everyone. But if you haven't tried it it might be worth a try, starting very small and working up to what works best for you. There are tinctures and gummies and all sorts of things these days, so it's not necessary to smoke it.

 

[ashlynn26]

I have had to have the attitude that the people I refer to has having lost weren't really a loss if they couldn't be there for you in your time of need with just some human decency. I get that my life is difficult and spending time with me is hard sometimes. It makes me laugh though when people say they can't deal with me as if I don't deal with me and my life on an everyday basis and have to figure out and manage how to get out of bed and just breathe that day. I can't deal with me most days. I'm not mad at these people, I just wish they could stand in my shoes for just 1 minute and get an understanding of how hard it is for me to and I have no choice.
I have used cannabis for the pain for a while now. I want to get my card for NY and go to a dispensary and get actual medical grade stuff. I tried to look up what would help with pain but it wasn't very helpful. I did get this freeze topical gel with cannabis in it that feels good. My family can't handle the smell so I either have to use gummies or vape. Do you have any product or specific strain that you recommend or use that help?
I've tried to get my parents to understand the positive effects the cannabis has that no pharmaceutical has. It helps with nausea, helps with your mood and actually give me an appetite. I try to explain how it helps the pain to them. It doesn't get rid of the pain but it dulls my nerves and senses enough to relax, try to stretch and gives me some energy to do a few things.

 

[sunkacola]

I recommend that you give up trying to explain things to anyone.
Explain once or maybe twice, in a different way, and then stop. Anyone who is truly interested will ask a specific question after that, and you can answer that. but if they don't understand after you have explained it to them it's because they don't want to bother.

Also, no one needs to understand. No one really can, if they have never felt anything like it. Can I understand what it is like to be a Syrian refugee? Of course not. Not ever. But I can be non-judgmental. I can go further and be sympathetic. I can go further than that and ask what I can do to help. None of the these require me to understand what life is like for them.

I have also given up thinking about anyone experiencing what I do in order for them to know. They don't need to know, and I don't need for them to know. Just need for them to treat me decently and with respect.

So what I ask of people is never that they understand. I only ask that they not make my life more difficult.
Judging me, refusing to believe me, giving me a hard time, or telling me what to do are all things that make my life more difficult.
Make my life more difficult, and you will find that you are no longer in my life.

One thing that I strongly recommend to people is that you avoid talking about fibromyalgia, or pain, or how difficult your life is, unless it is only to the most close friend you have. And even then, I ask for permission before I talk about it, in case that person just doesn't want to hear it that day. And I limit my talking about it to about 5 minutes, then move on to completely other things.

Talking about it doesn't help.
What helps is distracting myself from it, and for me one good thing about visiting with a friend is that we can talk about and do things that are interesting to us both and that have nothing to do with my problems. No one wants to hear problems all the time. I only talk about fibro if someone asks. Or, I will say, Well, I was going to go do this or that but couldn't because I didn't have a good day that day. Then I stop. That's it. No more talk about it.

I love the Tru Infusions cannabis tinctures. They have worked the best for me. As for gummies, so far for me they all seem about the same. Also you might try the CBD For Life rub. Even though it's only CBD, no THC, it seems to help me for certain kinds of pain. I find that this type of thing works well on this kind of pain, but not that kind. Other things work on other kinds. Experimentation has taught me what works for what.

 

[JayCS]

One thing that I strongly recommend to people is that you avoid talking about fibromyalgia, or pain, or how difficult your life is, unless it is only to the most close friend you have. And even then, I ask for permission before I talk about it, in case that person just doesn't want to hear it that day. And I limit my talking about it to about 5 minutes, then move on to completely other things.
Talking about it doesn't help

Yeah, I have to strictly limit health talking time with my wife, she's got enough on her plate, and usually already sees how I feel. She shows / reminds me to limit it, all the time. (But she also strictly limits my time talking about my work or my plants - not to speak of tidying up or our relationship, which can be tough for me, whilst she likes talking about animals.) Actually with her I have to tell her how good my life is, cos she thinks it's worse than it is for me. But of course from others I get the 'ah, you look better today' comments, which make me wryly smile and are disproved after 20 minutes.
However she also keeps telling me to explain to people in a few words why I'm not talking well (searching for words, or not coming out right), why I'm not talking (maybe just grunting or smiling), or why I'm suddenly moving and walking around and away during a (group) conversation. I'd've thought by now people should know, but apparently not. When the kids were there the other day it was OK for everyone that I just left, just waving, when I "broke down" after less than an hour (incl. breaks).

But actually talking for me does help me, personally - I think it depends on the attitude. Every time someone is honestly asking, which often happens, it's a helpful challenge to answer succinctly and productively, to grade where I am on my journey and where it's viable to go next. That's also a reason I like going to some doctors - they can hardly help me, but their listening does. After 3-4 years now and having tried so much, there's now only a little to hope for, so it's quick to summarize, and that's part of the challenge. Also it's more about my weirder symptoms, which seem a bit interesting to others, fibro is 'boring' . So my short 'progress' version is: I've got most of my varied symptoms under control, except energy, can only talk or walk 20 mins., but am happy in the air and sunlight of my garden all day. And the short 'how's today' type answer, whether I managed 2 or 6 games of table tennis or 2 or 6 minutes of workout, with or without problems.

I don't need to distract from it, I'm distracted enough as it is, and my symptoms aren't a 'problem' for me, I accept them, don't worry about them, find them interesting, finding solutions is one of my 'hobbies'.
I do find quite a lot of other topics interesting, but not being able to talk or listen much limits everything, everything quickly becomes a strain, even if I enjoy the topic, so everything becomes very short.

 

[ashlynn26]

I

One thing that I strongly recommend to people is that you avoid talking about fibromyalgia, or pain, or how difficult your life is, unless it is only to the most close friend you have. And even then, I ask for permission before I talk about it, in case that person just doesn't want to hear it that day. And I limit my talking about it to about 5 minutes, then move on to completely other things.

My family will ask the second I wake up how I'm feeling and I don't even know how to answer them. It is such a loaded question and I normally end up saying I'm just tired cause I don't want them to know how bad it really is. My mom never buys it though, she always can tell how bad it is even if she can't feel it.

I don't bother talking to anyone about it anymore. I used to. I always felt the need to explain myself when I couldn't do something and then being made to feel guilty. So, I stopped explaining and stopped talking which has helped me a lot. I don't want anyone in my life like you said who is going to make your life more difficult. I've definitely gained some peace in my life in the last few months by unengaging with certain people.

I appreciate the info on the THC. I will definitely look into it!

 

[Nan]

Welcome to this very good group. Hoping you have an easier day. Take care. Nan

 

[sweetkamie20]

Hi Ashlyn, Just checking in to say hi. I read this thread and I’m glad you shared - it’s helped me.

I’m glad to hear that you’ve stopped trying to educate some people. It’s not an easy transition to make to go from doing everything you can to maintain friendships and then realizing another person doesn’t want to be friends with the new you. That’s tough. And hard to accept!

To reiterate what some people already said: I found freedom the moment I accepted that I couldn’t cure fibro but I could manage it better. And that’s what I do now: I manage the fibro as best as I can. The result has been a fabulous improvement. Instead of feeling like my brain would just die from the magnitude of pain I have much fewer instances of the severity of that pain. If I do start experiencing that level of pain I stop what I am doing and relax. Otherwise, I’m asking for trouble.

My life is so far from what it was. Light years but I don’t feel miserable pain all of the time and I am enjoying new things I didn’t before. If you can do as sun said and radically accept your current situation then youll find an your own better approach to managing fibro.

If you’re up for giving us an update please do