Hey everyone,I hope you're all as well as can be, it hurts to think that everyone here is in constant pain, but I hope you've all had a good day and if not that tomorrow will be better.
This post might be a bit long and I'm sorry, I just feel like I need to talk about what I'm going through and noone I know understands, not even a therapist or my family members, and I'm grateful because it mean they're not suffering with this, but it's hard feeling so alone in it.
I don't normally post as I'm a bit socially anxious, lol, and because I mostly get negative responses from people I know when I talk about fibro, but I'm feeling very lonely and just really struggling. This might be a bit of a rant and I'm sorry. Feel free to skip🙈
I'm 34, I was diagnosed with fibro in 2018 but the pain started in 2017 and began so intensely I had to quit work for 6 months before I was able to return for a few months (then quit again for months, return for a few months, quit again for a year, return for a year, and then quit again a year and a half ago).
Because I can't work for so long at a time, or regularly when I can work, I've had to move back home and live with my mother who is really not understanding or empathetic and really just wishes I didn't have to move back home and that didn't need help and she makes it clear. Well not really clear, but passive aggressively "clear" and I'd rather her just be upfront instead of act the way she does lol. This isn't to talk badly of her, but the fact is it really impacts me in a negative way and has made living with fibro and dealing with all the losses it's brought so much harder.
I spent 5 years with hope every day that is wake up one day and the fibro would be gone. For good. Friends telling me it was in my head and I'd talked myself into being sick and could talk myself out of it didn't help (btw who would talk themselves into being sick? I spent my life being positive, believing I would have a happy and healthy life with a successful career and become a wife and mother and travel the world etc). A year ago when I'd been positive and hopeful every day (because I really was positive and hopeful! but also people kept telling me that would make me better) but unable to work yet again for months, and couldn't even walk to the end of my street and back (my street is 4 houses long lol), I accepted this might be my life now.😕
Acceptance actually helped me mentally deal with everything. I realised I may never have my career back, or may only be able to work sometimes. I stopped planning for the future because all of my ruined plans and dreams were getting me down and I'd started feeling suicidal. I started thinking realistically and trying to be grateful for any moment in each day I could enjoy through the pain and other symptoms, and for the little things I was able to do in a day, even if I only managed to shower which was super hard, without thinking about the coming days/weeks/months/years. Previously I had been thinking every day about the rest of my life and how I would handle being in pain every day when one day was too much for me. I started focusing on thanking God for the little moments of relief and enjoyment, even though I'm never pain free or feeling completely well.. like my time at the sauna where I find momentary relief, or the times I'm actually able to leave the house and see my sister, nieces and nephew and how much they make me smile even though my face is killing me after..lol.. or just having my dog next to me when I wake up and can't move and feel like I've climbed a mountain and been steamroller in my sleep..🙈
When I talk like this and explain how I feel or what I'm going through I start to feel extremely guilty because my once closest friend who I no longer talk to told me that when I tell people how I feel or what I'm going through it brings them down and makes them sick and they told me noone wanted to be around me because I'm so negative. I do my best to be positive and make the people around me feel good and I didn't realise that sharing honestly when people ask me how I'm doing or what I've been up to made them feel so bad. I didn't think that being honest meant I was negative. And on a side note, I don't think they're feeling as bad as I do every day, but apparently I bring them down without meaning to 🙈 so I've learnt to isolate myself and stay silent which I didn't think I should have to do but now I feel guilty when I talk honestly😕
I'm struggling with just being in pain every moment of every day and the thought I try to avoid that I will be in pain for the rest of my life. I'm struggling with guilt for being debilitated and feeling like a waste of space, which I know we all are not, but I can't help feeling that way. It might be different if the people I knew were more understanding and caring? I'm struggling with grief over the loss of every goal and dream I ever had, especially my career and being a wife and mother. I don't think anyone with fibro should feel guilty or anything about being a wife or mum that may struggle because of fibro, but because I'm still single and childless I would feel guilty purposely becoming a wife or mum knowing that I know I wouldn't be able to give what I should to my husband and children because I got fibro before doing those things. I'm struggling with being stuck at home and unable to do the things I want to do, and being unable to enjoy things I used to enjoy because of pain (and would still enjoy but can't becasue of pain). And I'm struggling with feeling alone and misunderstood by those closest to me. I also live with my almost 19 year old brother and while he's completely healthy and fit my mother waits on him hand and foot so that he never even leaves his room except to use the bathroom, while if I ask for any help at all she reacts woth anger and guilt-tripping and it's gotten to the point I no longer ask for help but just suffer because of rather go hungry or be unable to make my bed than deal with her reactions to my requests/need for help and the guilt, anxiety and shame it brings me.
This has become super long and probably depressing, so I'll leave it here. Thank you for allowing me to vent. Sorry if I did bring anyone down. I know some have it worse, but I just really needed some help today dealing with all this. Fibro sucks and I'm so sorry everyone here is going through similar stuff. God bless
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Turquoisesummer
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Please do not feel the need to apologise. We all have times when life makes us weary.
Let's try and turn that frown upside down. Google love letter to the normals if you haven't already seen it. Reading it will show you that you are far from alone and may help to educate your friends and relatives.
I try and see everything positively, not always easy and I can't always do it but I do try and play the "glad game" again thanks to the book Pollyanna for this one.
Have you seen your GP and explained how low you feel, perhaps CBT could help. Not for everyone but if you go with a "this could help" frame of mind then it may help you and at least it will introduce you to people who do understand what being in constant pain is like. Alternatively you may be able to self refer as we can in my area. Equally a referral to pain management could help. I managed to get a referral to Guys & St Thomas's fibro clinic. Took a couple of years of fighting but it was worth it. One off visit where I saw physio, rheumatologist, psychologist and one other person who due to the fibro fog I can't remember🤦♀️
Fibro is really difficult to treat as what works for one may not work for another and it is very much a case of trial and error. I can't take prescription meds so have to rely on other things. I use heat pads, hot water bottles, tens machine. Occasionally when I can afford it I manage to see a chiropractor and a hypnotherapist both of which help with pain and relaxation.
Try and get some very gentle exercise, even if it is just down the garden path. Sometimes I can only manage as far as the bird feeders to fill them up but it does the heart good to be outside even for a few minutes. Some members on here use Tai Chi and other gentle exercise which may help you.
Sorry for the long ramble, I will leave it here as I could go on forever but I am sure some other members will be along to offer some words of wisdom.
Thank you so much. I will google that and yes I've tried the things you suggested but even the things that used to help aren't really helping these days and I'm too sore/tired to make it to my psychology appointments😕 I think it you're right though cbt could help, and my pyschologist did help me cope when I could attend appointments more regularly. Maybe I need to find some kind of online therapy? I think I have a problem with overdoing it on my good days, even though overdoing it is way less than what I used to be able to do lol. I'll do as much as I can on a good day and pay for it for a week or a few lol, but the lack of activity fibro forces worries me so I try to make up for it on good days but I guess I just send myself backwards then. It's helpful to be reminded by others with fibro that we can't always do too much. Thank you for the advice and encouragement. It means a lot that people take the time to reply, especially knowing the pain and fatigue that is affecting us all and you all still took the time to respond. I appreciate it! 💛
Whenever you need to talk to people whom understand , rant , cry , stamp your feet , get it all out, or ask for advice you have a huge bunch of faraway friends in this forum whom are here for you. Day or night , winter or spring , you will be heard in a way that you probably haven't experienced in a while if you don't have any other friends close by with Fibro, or another Chronic condition that has taken a big poop on their plans for life too.
Granted , we can't come around and make you a cuppa but we can share with you and let you know you are never alone.
We all have this experience. In the most part our friends and families not so helpful advice and attitudes come from a good place . They worry ,or , as humans , want to feel in control and able to solve their loved ones problems , not just with a bit of practical help , but for good , and when they can't they find it hard to cope with.
Hence the not so health improving attitude from your Mum and friend. But it's practical help you need .
Communication is still vital there. You are clearly very intelligent and caring which is why you feel you need to protect everyone from your feelings bringing them down , or, feel guilty for doing the right thing and trying to be honest.
Don't give up though , if people's behaviour is still making you feel worse , or you need practical help , still tell them in an honest but positive way , just like you did for Us.
If it's easier write it down first so you feel more confident when you talk with your Mum or others , and find a time when they are able to sit down properly and chat , even if you prearrange it with them try it that way.
Let your Mum know that you need help with things , you wish you didn't , but this is what you've been dealt and you really need her love and some support to deal with it , and hopefully manage to get a bit of life quality back.
If she has never really read anything about Fibro , print off the leaflets from the charity for her and others you know or rely on to read and help them understand.
There are more work options available remotely now than ever before , perhaps when you feel more yourself you could list what your original ambitions were and see if there is some more innovative , small scale way you can achieve them by working from home , online or with flexibility.
Try looking up local Fibro support groups too , either on Facebook , online or face to face. They are out there and you will genuinely feel better speaking to people whom understand, you'll get great tips for things for you in your area, and you could make new friends to socialise with (even if you are looking at the same view in your PJs drinking coffee over Skype ). These will easily take the place of the Fairweather friends whom made you feel bad for bringing down the superficial mood of the room. Believe me , we've all had them , felt bad that they disappeared as soon as we needed them , rather than them needing us , but then realised how much healthier life was going to be without the stress of performing for them after awhile.
And don't give up on love or children either. Lots of people were diagnosed with Fibro before finding life partners . As long as you are straight and honest about your health issues you can still find romance . Don't feel guilty for looking for it , don't feel bad about your limits , a good partner is one whom enjoys whatever you have to give and enjoys giving in return. And when I say giving I'm talking love and time , most partners are happy to be the one doing the chores as long as they know the needs first. And , if you have children you don't have to be perfect or Superhuman, no matter how much the Media or the Playground parents try to make out that you do . Children want real love and are happier with your interest , hugs , chats , and any sort of activity you can do together no matter how slow it may be. Anybody can give lifts , let the other parents perform somersaults , bake ten million cupcakes , buy gold encrusted trainers , you don't have to. It's all still possible.
You've got a great attitude, get back to hope , just get creative about what you want to use it on . If you aren't getting enough medical help or need advice on that think through your treatment and write another list asking for suggestions and people will advise you.
Tips on benefits , maybe getting help or housing so you can be independent, tips on self care to help reduce that pain just keep posting for suggestions and so many people will try and help. And try those local groups if you can too , plus kick your brother and tell him to go get you stuff if you need it , sounds like he has enough free time on his hands to help you too!😄😄😄
Thank you so much! You made me tear up🙈 haha, and the last part made me laugh! 😂🤣💗 I'm sorry I'm a bit too foggy and sore to reply in detail atm, but I've taken in everything you've said and thank you so, so much for the encouragement, advice and suggestions! *hugs* I'm in Australia and support groups are a bit far away from my suburb but you guys are amazing and I think I'll hang around here often 😊 I wish I could reply to you in more detail, but thank you again, I really appreciate your reply and will keep all this in mind! 🙏
Hello, I think you have done very well to write this down and good thay we can explain how we feel here(members here will truly understand everything you have said) i certainly do for sure. I ve took my friends down to a very small group now as I couldn’t keep up with anyone and even now trying too plan will be very hit and miss, I just found it easier for my own mental well being, I’ve certaintly learnt there are some very very mean people out there and it is not until they get diagnosed with a condition or illness does the penny drop and they actually think 🤔 now I know what it feels like. Shoe on the other foot comes too mind and even some doctors really need too think out side of the box when talking about this condition, it can happen too anyone anytime. Is there any local Fibro groups that meet near you at all? I’ve read your post and it’s very well laid out with how you are feeling so I think chatting here is very helpful, I’ve been on the forum proberly 6 years now and I find it helps me too chat and read posts as it reminds me we are part of a very big unwanted club. I think having your dog must be a comfort i certaintly miss having one , but with my husbands help I get 2 visits from my grandboys each week sometimes I’m like the naughty cheeky nannie and other visits I’m very quiet and can’t do so much , but yes seeing your nieces/nephews is very uplifting. Have you a nurse practioner at your surgery ? I have a lovely lady who I can engage in conversation with and let feelings out ,more so than seeing one of the doctors as they can change all the time. I can’t wait for Spring and sit outside as I really think for me personally Winter being cold etc is a lot harder pain wise. I hope you are okay reading my long post , but wanted you too know I’ve read every word , come chat again xxx
Thank you so much I really appreciate your words and the time you took to reply🙏 reading everyone's replies here is so helpful and I definitely feel less alone💗 there are no close support groups near me, but you guys are beautiful and I'll definitely hang out here. I'm happy to hear you have supportive people and positive experiences😊 sorry if I don't make so much sense today, I'm a bit foggy and having trouble putting thoughts into words, I forget about that symptom when my brain is working, haha. I'm understanding everything everyone had said but when it comes to replying my brain is going fuzzy lol. We have a lady who takes blood but I'm not sure if that's the same as a nurse practitioner? I understand what you mean about winter, it's hard for me too for sure! Thankfully it's summer here in Australia, but I'm dreading winter! Thank you soo much for taking the time to read and reply, it means so much! xox
Well, I made it right to the end, still standing, unharmed and only feeling empathy so no apology is required. It must be so difficult when you're feeling so isolated due to Fibro. We all need some support so you've found a good place!☺️
I'm usually fine or good when asked, you know most people aren't really expecting an answer, certainly not an honest one. If they do, they will ask again. Maybe gathering some good information for your mum to read? Then you don't have to try to explain, don't know about you but when someone asks me I'm like a rabbit caught in headlights and seem to lose the ability to speak 😳
You've had some good advice already but checking in with your GP - change of meds might be helpful. Sometimes it takes a drug 'cocktail' so to speak that takes a while, a lot of tweaking but can be so worth it if medication is an option for you.
Thank you soo much!💓 you're all so beautiful and your replies are all so supportive and encouraging and helpful. I too say good usually even though it feels like lying but knowing as you said that most people dont really want to know lol but with my family and closest friends I thought honesty was better. Unfortunately not so much🙈 Thank you for the encouragement and advice. I have given my mum lots of info/sent websites etc but she kind of just complains like "well my back aches, too," or just completely ignores it 😕 most of the time when i try to talk to her she scrolls on her phone or gets up and walks outside and doesn't even respond. I understand the deer in headlights thing 😅 such a weird feeling, like our brain is disconnected from our mouth or something..haha🙈 thanks again💗 it's been a bit of a tough one, but trying to remind myself not every day is as painful🙃 x
ohh sorry that u come through all that. I think that’s good u share with it. People need to be understanding. I’m 33 years old from one year diagnosed with degenerative disc disease and I’m allready felling exactly like u. Alone with it and not understanding me. And just I wish to sit with someone who does understand even a little
Thank you so much. And I'm so sorry for what you're going through too. I understand, and I've discovered everyone here understands too, not that it takes the pain away, but it sure makes it easier to handle huh?💓 it would be so cool if all of us could meet up🙂 sending hugs, and thank you for taking the time to read and reply 💕
good morning x maybe you can speak to your local council about the Rent Deposit scheme to try n help you rent a place of your own also housing waiting list . You maybe entitled to get help with your rent as it doesn’t seem to be helping living at home at all . Even house sharing maybe be better environment for you as not helping her mental well being living in a home that you can’t be yourself x
Accept that your mum will never understand and had to accept that lots of people do not understand what I go through n now realise even if they do , it doesn’t matter as it’s me dealing with my stuff . Get your own room into a beautiful sanctuary n concentrate on yourself get a routine going for you with meditation, exercise, Learning listening to good pod casts and don’t waste limited energy in on trying to get the others to understand as who cares it’s you who needs to be ok . Personally , I paid for swimming lessons n hydration therapy then organised my day with the things I can manage n make me happy 😃 it gave me less time to worry about what I can’t do or room for my own pity as these we’re making me feel worse.
Get your nice note book out and a great pen and write a nice journal of what you like to do n who you can phone to get a plan in action just for you as you are in charge . Sending you the biggest amount of positivity n inspiration, you can do this , don’t change others , change yourself in areas you can starting with great thoughts and ignore the negative thoughts as they are so unhelpful xxx
Hey x thank you so much for reading and replying. I do think I would feel better in my own home or house sharing (although house sharing scares me a bit because I have ptsd) but it's just so hard to find places which allow pets and I just can't leave my dog🙈 but thank you soo much for the understanding and all your advice. I'm having trouble replying in detail as I'm a bit foggy today but I am saving everyone's suggestions for when I can think again🙈 and thank you so, so much for your beautiful reply. I feel so much love and support from everyone here, I'm glad I wrote to you all, and I'm so grateful for every reply. You're all so beautiful.. so greatly appreciated! xxx
My heart goes out to you Tq. You speak very clearly for all of us about the unfairness and disappointment of this nasty syndrome and you have found the courage to speak out. Thank you for sharing because by doing that you are supporting us in all our self doubt. Me especially right now as I'm just coming out of a flare. - You will get through this particular period of your life and will become a compassionate and empathetic ear for others if not already. Think of it as a kind of training for your 'calling' because there will be so many others in your future who will benefit from talking with you when they have problems. (Kids especially have great need of kind uncles and aunties who really listen, especially one with a dog who can read their mental set too and respond in kind.) - Looking back, my thirties was a time when I naturally became more assertive, even with migraines, depressions, pms and self doubt that came and went. It's a natural developmental phase that, but it is also probably why you feel everything so acutely now and if you do not become a person who talks and talks on the Media, well, you will have succeeded so very well! (It's probably not just family and friends -hmm!). So many people's thoughts and attitudes are poisoned by that hideous anomaly of human activity that lurks in the daily news. Its superficiality influences how we all think and react about everything these days. (Consider the Soaps too!) Perhaps brain fog is our own minds telling us to do something that is actually sensible about that real life and that is, switch off sometimes. So, rest when you can. Listen to your own voice and intuition and trust it despite all the grieving that comes with it. DNA wise, remember, 'you', were actually the 'winner' of the great sperm race! You are fit to be a warrior in this particular b..y jungle we are in. x
Wow, thank you so much for your words, encouragement and support. I'm having trouble replying, getting thoughts into words, but I'm taking everything in and every word you said was so beautiful and encouraging. Thank you so much❤ I want to reply in detail, but my thoughts and feelings just won't come out through my fingers too well atm..sorry. I hope you understand, but thank you again for everything you said, it means soo much and is so helpful. xx
I totally understand how it all is. I am also amazed at what others here go through and sometimes I just get a little click of new resolve from something someone says that enables some kind of helpful shift against the daily struggle. Keep going but as relaxed as you can, and as many here say ... Gentle hugs. xx
Thank you so much to everyone who replied. I couldn't reply in as much detail as I want to, but you're all so beautiful and amazing and I'm so grateful. Your words have been so uplifting and encouraging and have made me laugh and cry and feel so many beautiful things🥰 I can't thank you all enough. Just reading your replies was a huge change in my daily experience of life. I'll definitely hang out here often and I hope I can one day uplift and encourage anyone who needs it as much as you have me❤❤❤
Secondly we are told to share our stuff because mentally it helps us .. but the reality is others don’t want to hear it …
Share on here in your safe space .. no judgment.
I would get yourself on some strong antidepressants.. I coped better with the pain once my brain chemistry reacted better to the loss I felt of dissaapointment in my own ability. Hobbies/being involved/ having visitors/ music / humour and reading all help to distract as well as lift you .. I use cbd during the day and tramadol at night .. that is a balance that’s different for all ..
take very gentle but positive steps to not dwell on the negative parts of this .. but keep always looking for each positive however tiny xxxx
Hello! xxx thank you, thank you, thank, you! For every bit of advice! I will take it all on board. You are all angels!! Gentle hugs back!! Xxxx (although,, somehow, the squisher hugs are more pain relieving for me, is that weird? I've heard lots of fibro warriors hurt to be hugged, but for me... the more pressure, the more relief..?) Super, super grateful for your reply! Blessings! ❤
Hi Turquoisesummer, I did reply to you too but for some unknown reason it didn’t go through to you. I see that you have had many lovely replies with advice and support etc so I won’t repeat all that I wrote as mine was long too haha. Just want to say that everyone has said everything I did and more so I truly hope that you can build on the advice. Sending 🤗🤗🤗and ❤️❤️❤️xxx
Aww thank you so much! And I do wish your reply wasn't deleted as I appreciate every word and all the time you took to reply to me!! *hugs* and ❤❤❤ xxx!!
Despite your misgivings, your post wasn't so depressing. All veins are still happily intact😊. In fact you mad me smile. Fibro is just like you say!
My thoughts to take or leave are;
Well you don't need me to say having to go back home to Mum sucks. Probably for both of you? So tricky and mostly we feel a bit of a failure when it happens. Even though it doesn't mean that. You just need breathing space. Somewhere to be for a while. Mothers and sons are unfathomable. I'd close my eyes to how you are treated different.
I suspect this is your time to take stock of Who are you, what can you do/like doing/good at? What is your talent? Not you money maker necessarily, but what is your thing?
Have you been a bit anxious to do that thing in the past? Like you ought to be spending your time doing IMPORTANT stuff not the silly 'unimportant' stuff, like what makes your heart sing?
A lot of folks can't be themselves. They are so busy figuring being what others want them to be; Cheerful, hardworking; Anything but what they really are inside, that they get lost. If you ask them, what makes you happy, they shrug. When we ask
'What would you like to do?' The reply is often,
'Well What would you like, because, I don't mind.'
Lots of us are people pleasers. Trying and failing to please others and failing ourselves too. Such a bummer, because all we want is for folks to be happy. And that isn't in our power to make happen, so we are always doomed to fail. All we can do is fix ourselves and how we feel.
So here you are, single again? No responsibilities? What's gonna be your thing. The thing that gets you out of bed? Puts a smile back on your chops, makes you feel like you. The real you? Please don't answer, another relationship. I mean what can you do for you?
Relationships are best attempted once we feel better; More whole in ourselves. Not cured perhaps, but content in ourselves? There is more chance you will be offering something authentic at that point, not just trying to please, which is far nicer to receive.
Time for that thinking cap? Or lots, or a bit of meditation? Who are you?
I noticed, you managed to keep my attention until the end of your post, even though you wrote long. That is something. Makes me wonder. Do you have a creative talent? To write maybe? A passion? Do you enjoy expressing yourself to a blank page? A page that doesn't sit there and judge you as BORING? DEPRESSING? even before you have finished a sentence? I'm just musing here. So don't worry if I'm wrong.
Writing, having your say uninterrupted, can be freeing. Someone once said,
'I write so I can find out what I have to say'. Very wise words I think, almost wasted on me. Except remembering the words, even occasionally, is more use to me than remembering the speaker's name, don't you think?
If you find your thing, writing, painting, photography anything, it doesn't matter, and you find yourself immersed, content happy doing it, that's what life is about. If you make a success, make money, that's a bonus. Most people probably don't. But finding your happy place is what's important because it is in that place, where you can find the real you. And that's what we all need to find. It gives us confidence and something to offer to the world.
And FYI the real you is not anxious, and hopeless or any of those things you fear. The real you, is someone you really really will enjoy meeting and spending time with.
So, stop fretting and figure how to start doing your thing. Maybe you will try lots of things? Who knows?
Dunno if that helps? Or makes sense? I just went with what your writing made me feel.
Aww 🥰 your first paragraph! -All veins still happily intact- and I made you smile🤭 you guys just keep lighting me up and making me smile too you're all so beautiful🙈 and ok, wow!!🙈 this is gonna be short, because I have so much to say that my brain won't allow me to process and express right now haha but your whole reply, which was insanely beautiful and kind and inspiring and I think absolutely spot on, I am so grateful for... Thank you dearly for taking the time to reply to me. This couldn't have come at a better time, tbh... Every word, I was like, "what? 👀 how do they know? 👀💛💓" 🤭 I think you're most definitely a better writer than me!! But thank you💛 And you have certainly encouraged me to explore my passions and who I really am ! So much compassion, inspiration and encouragement in your reply, thank you so much! I will take in every word and take your advice, so beautiful, thank you so much💞
No worries. And don't forget with creativity, you don't need to be the best, just the best at doing your thing your way. 🗝️Probably that goes for everything we do?
First, you didn't bring me down. Second, that is pretty much my story right down to the aggressive mother. Although I don't have to live with her! Thank you so much for sharing. I actually needed to hear that. Since having this experience I have really realized how unempathetic people are.... They really don't care. And if people who know I have fibromyalgia and see me struggling....I don't even have to say anything... They just start comparing their problems to mine like it's some weird kind of contest. Well, hate to tell them but this is one contest I'd love to lose.I wish we were all closer so we could actually get together and have some good company for a change😂🥰😁🤗
Hi Suzi, thank you so much for your reply and sorry I took so long to reply🙈 I'm glad i didn't bring you down, thank you for saying❤ and I'm so happy that somehow my sharing helped you❤ and wow, I hear every word you're saying and I'm so sorry you can relate so well. Yess!! I would love that!😊🥰😂☺ so wish we could all meet! I agree with every word you said! I'm so happy you don't have to live in a negative environment though and hope your current situation is as good as could be💗 wishing you the best..xo
Hi Turquoisesummer, reading what you wrote was like reading a younger me. I did make it to my career as a nurse (RN), marriage, ministry and getting pregnant with my daughter. I thought it was high hormones good for baby bad for me. It started out that I would miss 1-2 days a week, then 3-4days a week. My supervisor was very kind and understanding she finally put me on light duty and I was about to work most days. The ladies in the church however were not as understanding they talk as if they worked out in the cotton fields up to going into labor and returned back to work right after giving birth. I was 31 when I had my daughter, was 26 when I got married and 33 when I was diagnosed with fibromyalgia and CFS/ME. I had seen numerous doctors and a numerous tests, blood work and was literally scanned from head to toe before being diagnosed with fibromyalgia and company (as I call all the other diseases that go along with fibromyalgia). My doctor said that having another baby could make the fibromyalgia go away. I looked at my husband who was supportive at the time and said let’s have another baby. So we did but I had toxemia with my son. Blood pressure was 175/110 so after attempts to lower my blood pressure failed they induced labor and he was born at 35wks weighing in at 3lbs 13oz. The fibromyalgia didn’t go away but got worse. I had to go through a lawyer to apply for disability which we won the case and went on disability which went back to 95 and 5yrs later after a move to Florida from Wyoming my husband started looking for greener grass. So I lost my career and ministry, my marriage and family for he had researched and planned out the divorce to go in his favor. Will have to finish this later my sister stopped by. Okay it let me edit to continue. What you are doing is the same as I did grieving the loss of my health. With a identical twin sister who doesn’t have fibromyalgia but is experiencing other health problems herself. Anyway it has been 31yrs since symptoms started and 29yrs since being diagnosed. I know your pain and feelings you are going through. Are you involved with a fibromyalgia support group that meets in person? That is a good place to start. Talking with others who are going through the same things. I wish I had good words of wisdom but I am still going through the same thing. I feel your pain. Expressing how you feel is not being negative. People not taking the time to listen and being supportive are the ones who are making it negative. Keep the faith that one day this suffering and pain will end. 🤗💜
Hi Sarah, so sorry I took so long to reply. Wow, reading your reply was heartbreaking but encouraging at the same time. I have had a lot of brain fog lately and am worried that if i try to reply in detail I'll run out of mental energy and won't make sense. Forgive me if my reply seems short. I have never heard that having a baby could make fibro go away but i sure wish it would have done for you❤ I'm so, so sorry for your losses😔 I'm also a twin sister, but not identical! Thank you so much for sharing your story with me. Isn't it awful that other Christians can be the most misunderstanding?🙁 I'm so sorry you're still feeling this way 😔 but thank you so much for your kind words and encouragement. I haven't been able to find an in person support group where I live, but this site is super helpful. Thank you, thank you, thank you🙏 I needed to hear your words of understanding and encouragement. The last 3 sentences too I greatly appreciate but my brain has gone offline and I can't seem to generate a proper reply😕 I'm sorry but please know I appreciate and have processed every word. God bless, and thank you again.💕
Hi Turquoisesummer, you are welcome. I understand the brain fog going offline thing. My brain is that way today. Been having a lot going on that left my foggy exhausted and in pain today. I don’t remember when I replied to you and my time frame remembrance thing is broken. Does your twin sister have fibromyalgia too or is she healthy? There was a twin fibromyalgia research study that I got my sister and I involved in. It took some begging on my part to get her to agree to participate in the study with me. This was back in 96 but the research study started in 95. It was out in Seattle WA from 95-05. I had hoped they would have led to a cure but did lay a foundation of understanding how debilitating fibromyalgia and CFS/ME is. It laid the groundwork for other research studies on fibromyalgia and CFS/ME to build on. If you hear of any research studies. I would recommend getting involved to get involved in. It would help in getting closer to finding a cure. That brings more awareness to the medical community about what we are going through. Sorry for rambling. I’m so happy that I was able to help you. 😊❤️🤗💕
Hey all!! I just wanted to say thank you again to everyone, and also sorry if I didn't reply to anyone (I'm still getting used to the site and just reading "alerts" can get my brain a little outta whack and confused/foggy🤦🏻♀️) and sorry for delayed replies, though I'm getting that you all understand this and are not judging me!!🥲💞 Such a big difference for me and I can't thank you all enough for being here for me and for every word you all have replied!! Honestly, you guys are the most beautiful bunch of people, and I'm so grateful for your love and understanding and help, but also wish none of you/us had to go through this!!💖 Wouldn't it be the best if one day we could all meet in person for a big group hug!🤭 I don't know what y'all beliefs are and I have no intention to offend but I hope and pray I'll see you all on the other side, if not in this lifetime, for that group hug!🥰 I hope and pray you all realise what a help and blessing you've been to me. I don't know what I'd do/how I'd cope without other understanding and caring humans such as yourselves!! *Gentle hugs to all!! And squisher hugs if that's better for you (I mentioned this in one of my replies hehe)* honestly love you guys!💓💕
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Fibro fog.
Really in need of help with pain/depression.
I need help with painkillers please!
Hi 17, just diagnosed with Fibro. 
Fibromyalgia and pregnant 
