Is this my life now?

[Natty88]

I was diagnosed 2yrs ago... but has had it about 7rs and took that time moaning about pain and fatigue... last 2yrs have been the worst.. stomach problems I'm always been sick feeling sick.. no energy can't walk as pain in my hips... hands are painful and numb.. no energy skin feels like it's got blow torch on most days... scared to go out shake constantly.. I'm the shell of my former self I used to put makeup up do my hair.. nails eyebrows lashes.. now I'm having to go bed in fresh clothes sleep in them so it saves energy for next day... I never do all the things I used to.. I feel so alone in the life they call fibro... the depression is killing me to I want me back is she gone forever? As I can't see her ever see her making a comeback I feel robbed I'm now having to fight for pip disability and I barely have the energy to brush my own teeth now...

 

[SBee]

Hi @Natty88

I think many of us could have written your lost in relation to ourselves. Have you taken a look at @sunkacola post giving advice to newly diagnosed? I still look at it myself at times.
Am also UK based, and its so hard when it feels like we are given a fibromyalgia diagnosis the almost sent away with no idea what to do next.


Do you have a good GP you can speak with? Maybe ask to be referred for physio or a pain clinic ( long waiting lists ) to help you find out ways to help yourself. Or to discuss meds if applicable. These dont always help,its quite an individual response. Maybe take a look at previous posts about meds to see others have experienced. Maybe even anti depressants could help with depression ? Or ask for talking therapy referral. I have, and it has helped me.

Pacing makes a huge difference, especially with chronic fatigue. I know yours is particularly bad atm. Congratulate yourself on the things you can do, even if they seem ridiculously small achievements. I have found reluctantly accepting I have fibromyalgia ( and other conditions ) has made a massive difference. My life has altered beyond recognition, but slowly I have found ways that have helped me help myself, so i feel I have a bit of control back.

im not saying its easy,but this forum is packed with people who understand and are willing to help and support you as much as we can.

good luck with the PIP ( I was awarded standard on both parts ) and ask anything you want on here, or vent - I have used the vent bit quite a bit. Its there for a very good reason
take care

 

[Radmun]

Hello @Natty88, I can surely sympathize with you regarding feeling robbed. I have cried a lot bc I can no longer be the person I once was, too. I’ve been listening to a Podcast called Messy with Christina Applegate and Jamie Sigler. They both have MS and share their struggles. Some of their symptoms are very similar to FM. After listening to them discuss their ups and downs, I honestly feel like I can handle my problems. One of those situations where someone else is in a much worse situation which it makes me pause and reflect. Hang in there and hope you start feeling better. You are not alone.

 

[sunkacola]

Hi @Natty88 , and welcome to the forum.
Accepting the changes that fibromyalgia brings to our lives is I think quite possibly the very hardest thing. For me, it has been far harder to reach a point of acceptance of this than dealing with the pain and fatigue themselves.

I was an extremely active person. I worked out, hiked, climbed mountains, did landscaping, worked in physical jobs, and basically tended never to even sit down during the day because I had too much to do. Always working on an active project of one kind or another. I didn't even realize how much of my personal sense of identity was wrapped up in being "the energizer bunny", something that many people had called me, until it started being impossible for me to continue to do all of that. I don't think I have a sense even now of who I am and what my worth is without being that person, but I have managed to accept this new reality, and I find that that acceptance has helped me a lot.

T he feeling of being robbed of self and of life is one that many of us here know. I have felt it.

I can't give you a map to follow on how to navigate the emotional component of all of this, because unfortunately that is a path we each have to find for ourselves. I can tell you that one thing that has helped me is try to separate "Me" and who I fundamentally am, from what I am able to accomplish physically in any given day.
I am not saying I'm an expert at this or manage to do it every day. But I try to remember that my value as a person is not dependent on what I can do physically. That I might have other things to offer, at least some of the time. That's hard, and even when I am able to do that it doesn't help with the fact that I miss how things used to be. There's grief there, and that is understandable.

I also try to remember that nothing, good or bad, ever stays the same. Life is constant change. And, while I am not a person who lives on unreasonable hope, or pins myself to expecting or even wanting miracles, I remember that the future is never, ever predictable, and things could even improve in some way. sometimes something can happen that is entirely unexpected, and that can make your life better even if you still have the physical limitations, even if you think that nothing short of full recovery could make life better. You just never know.

I don't know if any of this helps you or not. I hope so. But if not, stick around because what someone else says might help you in some way.

 

[thparker13]

Hi there - your story resonated with me so much! I was diagnosed about a couple of years ago, but have had pain for years now not knowing what it was. A few years ago I went and say a Neurologist and a Rheumatologist for the migraines and body pain I was experiencing. I’ve since been diagnosed, put on a bunch of meds, creams, lidocaine patches, and so on.
Over the last few years I’ve also had an so many surgeries for various reasons. All of them necessary, but it’s been a lot for my body. I recently started getting worse pain on my left side of my body, which I found odd. Several of my joints feel icy on the inside but aren’t to the touch. My hip has been hurting so bad, it feels as if I had fallen on it or something. My hand hurts as well, mostly my pointer finger and is preventing me from gripping things. I don’t understand what is going on.
I’ve applied for disability because I can no longer stand, sit or walk for long periods of time. It’s extremely annoying how exhausted I am all of the time, some nights I can sleep and others I wake up after a few hours. However, disability is a pain to get! I finally have a hearing, but is the judge going to understand?
I’m so over the pain and everyone around not able to understand because they can’t see it. I don’t blame them, but it hurts mentally and emotionally along with of course the physical pain. Why isn’t there a medication out there that truly helps? I’m on pregabalin, hydroxychoriquin, and methotrexate along with muscle relaxants and pain pills, and nothing works. Please, if there is someone that has advice, I’d love to hear!

 

[marymi]

@Natty88
Ive had FM for 56 yrs. It's really tough at first because you have to keep going in your life with job kids etc. I mean that's what i had to do and succeeded in having lots of good spells from it
I treat every health problem to do with FM separately and have had many ups and downs like a roller coaster. I cannot talk about Chronic Fatigue as I have not had it. I DO understand what you are going through for sure. I did not read any books I just found my own way through it as there was no literature then. I found the most help through my own experiences and this chatline which was called another name back then
I have been frustrated with all my specialists, doctors exercise physios but now I have found meds for each problem and very low exercise has helped. Also the right antidepressant to help low moods and the pain. I do hope I have helped you in some way. Thinking of you.

 

[sunkacola]

I’m so over the pain and everyone around not able to understand because they can’t see it. I don’t blame them, but it hurts mentally and emotionally along with of course the physical pain. Why isn’t there a medication out there that truly helps? I’m on pregabalin, hydroxychoriquin, and methotrexate along with muscle relaxants and pain pills, and nothing works. Please, if there is someone that has advice, I’d love to hear!

I have found that one of the things that helped me the most was to stop ever expecting ANYone to understand unless they also have or have had chronic pain. The thing is, they simply cannot. As much as they try, they cannot possibly genuinely understand what it is like for us because it would be like you and me, with both of our legs, trying to understand what it is like to lose both legs in an accident. We could sympathize, be a good friend, listen, and so on, but we would never actually understand what it is like because we have no way to do so. So, if you can give up that expectation of others it may be helpful because if you realize fully, and fully accept, that it's just not possible for them it will stop making you feel bad, and instead you can appreciate them for what they are able to offer.

If the medication you are taking is not helping, I suggest you consider talking to your doctor about not taking it, because it is not doing you any good to take meds that don't help, and some of them can have adverse effects over time.

The unfortunate thing about medication and fibro is that there isn't any one medication that helps everyone with fibro, and in fact there are very few that even help many of us. This is, I think, because pain medications are designed to interrupt pain that is localized and caused by something in that locality. If you have an injury, a pain medication can help. but if the problem is not in the body but is a disorder in the brain, which I am coming to believe is the case with fibro, then regular pain medications are unlikely to help.

The one thing that will help everyone at least to some degree is increasing your overall level of health by getting daily exercise, eating a very healthy diet, reducing stress in your life, pacing your activities, getting enough sleep and rest, and doing whatever works for you to maintain a positive attitude. Exactly how one goes about those things is very individual.....again, no one thing is for everyone. The thing is you have to try things until you find something that works for you in each of those categories, and then be flexible and willing to adjust as things change.

 

[marymi]

@sunkacola Well said. It is very individual in its own way. I am so sure it is our brain not functioning as far as sensitivities go. Too loud, too hot, too cold, painful, not sleeping, stressed etc. When doing home duties I finish one job, then continue. Only way to go on a bad day. I agree if people can't feel the pain then they will not understand. Hope this helps someone.

 

[marymi]

@sunkacola In sentence no five I meant I stop and have a break.