New at this, just need someone to tal... - Fibromyalgia Acti...

Fibromyalgia Action UK
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New at this, just need someone to talk to who actually understands

Sarahrose33
Sarahrose33

I’m 33 years old and was diagnosed with fibromyalgia last year right after my hysterectomy. I had cervical cancer and decided to have a hysterectomy to remove my cervix and uterus. I went back to work too soon and apparently tore my incision while I was working (I’m a hairstylist) and had excruciating pain that night so I called 911 and had to be rushed into emergency surgery because it got infected and almost killed me. Anyway, ever since my surgeries and being diagnosed with the fibromyalgia, I feel like my entire life has gone to shit! I can’t play softball anymore, I can’t work long days at the salon, I had to quit bartending and now I’m struggling with money horribly! I’m a single mother of a 15 year old son who’s father has never paid a penny in child support! I use to work at the top rated salon in the city of New Orleans and I bartended at high end restaurants and prestigious events for ESPN and Maxim magazine. So needless to say, I never needed his help because I have always been a hustler and hard worker and provided everything my son could want and need. These days I maybe have 4 clients a week, I can’t bartend anymore because my rheumatoid arthritis in my hands causes me to drop things and I just had to move into another place (this is the 5th place we’ve lived in 12 months) because I got evicted from my last place because I can’t pay my rent. I’ve gotten extremely depressed and so not only has it caused me to lose a lot of friends but it’s caused people to think I’m addicted to drugs because apparently depression looks a lot like drug addiction. I can’t get out of bed sometimes and go days without answering my phone because I don’t even have the energy to speak. I will stay in my pajamas for days but can’t eat or sleep. I get so frustrated and irritable so the people I do actually talk to end up being the recipients of my shitty attitude and nasty moods. Then I’ll snap out of it and get back to my normal self, smiling and laughing, with a positive, optimistic attitude and know that it could always be worse and realize that I need to be grateful for the wonderful things I do have in my life. And I’ll go a few days with a better attitude but then go right back to being bitter and angry because I’m just exhausted physically, mentally and emotionally and I get so upset when I hear the things people are saying about me! That they feel sorry for my son since he has a drug addict for a mother and that it’s so sad how much I’ve changed but they wouldn’t even know if I’ve changed or not because the same people who are saying that cr*p are the ones who’ve never taken a moment of their time to even talk to me and ask me what’s going on! And I think the only thing that could possibly hurt more than people saying I’m a bad mom is if my son actually believed it! Thank God he doesn’t and is old enough to take care of himself because I don’t know how people have small children with this disease. Thank God my son is smart and grateful and he appreciates things and understands that I can’t help how I feel on bad days and not only does his part around the house but even takes care of me and never complains. I used to have a huge group of friends and I have a very big, Italian family who are all very close with each other but even family members I never thought would turn their back on me in a million years, have yet to return my calls and texts, much less be the ones to call me just to say hey or anything! It’s devastating! I went from having the world at my fingertips to watching it crumble to pieces all around me! I need to know things get better! Please someone say it gets better. This picture is from 2016 when I was working at the top rated salon in all of New Orleans, making tons of money and having people gush with compliments and wanting desperately to be a part of my life! Now I can’t get anyone to come spend time with me to save my life! This has definitely been a major learning experience and allowed me to see people’s true colors but it’s very lonely and I’m so tired of being sad and in so much pain all of the time.

4 Replies
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Having read most of your message- your job is not a good career fora fibro sufferer, I was a theatre nurse (obs and gynae)on my feet most of the day and had to stop 2 years ago..Treatments and advice differ across the waters, maybe find yourself a warm hydro pool and ask for a physio to help you with muscle excercise,, I have used hydro for 4 years now, I do pay even though we have NHS but its worth it,, I do take meds,, is it possible to maybe sit on a stool some of the day whilst styling hair? IN between clients do some gentle muscle stretching that a good physio will offer you and cut down your hours-maybe just offer the services that bring in more revenue to you. good luck,, bye the way we have another sight here that might have ladies who have had surgery -go to My HUB use the drop down and select emdometriosis, Lots of chats. advice and good tips from the people on their.

Hi there Sarahrose33 welcome to the group :) I am sorry for your suffering and what you are having to deal with. Sadly it's a story most of our members know only too well. I have had fibro for 30 + years and for me it has been slowly progressive. But there have been others who have been known to go into remission for a while. But I have never met anyone who has fully recovered from fibro. Some say they have but not sure what they may have recovered from was actually fibro,

May i just give you the heads up about locking your post for privacy reasons. You may wish to keep it open that is up to you but what you post can be picked up by the search engines and read by anyone on the net. If you wish to keep what you post private to this community only this link will show you how to lock your post.:)

healthunlocked.com/fibromya...

You may like to take a look at our main web site it has a wealth of information you may find helpful fmauk.org

I hope you continue to post here it is a very friendly forum and it's members are always supportive (((hugs)))

Momo

hi sarahrose33 so sorry for your situation life can be a pile of sh*t at times i went to my doctor in 1991 i was 19 years old at the time with back pain my doctor said it was just a bit of muscle weakness he suggested exercise i joined a gym for a while it seem to ease little did i know i was headed for a big fall i was in a job where you spent most of your day bent over backwards i went to work on a saturday as normal did my shift went home and my legs felt funny like they werent mine anyway went to bed next morning woke up and knew something was wrong i couldnt feel my legs or move them i had tested done but nothing could be found wrong i was paralysed from the waist down for 3 months i could not move my legs i thought my life was over i wanted to kill myself no one was there to help me understand this even my parents dismissed it as nothing after 3 months i started getting feeling again in my legs it took over a year to walk again but i still had this problem with my back then it started spreading to my arms legs neck i would feel drained moody pissed off and headaches i lost interest in things i loved i pushed people away i felt like i didnt fit in this world anymore most of the time i hated myself for feeling this way i went back to my doctor told him he give me some painkillers and sent me away after a while the painkillers became my life i had to make sure i took them i couldnt miss them they became more important than eating sometimes i went back again to my doctor again he sent me to the hospital for test after what seem like forever with blood test and scan i was diagnosed with fibromyalgia this was a relief to finally put a name to my pain ive had a lot of prejudice towards me because i was unable to work by friends family and doctors at the time fibro was classed as mental illness connected to depression and not a physical illness like they said what you cant see you cant cure thankfully attitudes have changed ive live with fibro 27 years nows with the help of better drugs and understanding but fate has kick my in the arse again 6 months ago i collapsed at home fell and hit my head on the toilet well smashed the toliet with my head my brother found me almost dead id been sick and swallowed it and it had gone on my lungs and also swallowed my tongue he came to my flat found me he saved my life i was took to hospital i was in a coma for 10 days on intensive care while there i got double pneumonia and a chest infection i had to have a chest drain as well as been put on a ventilator at one point they give me 48 hours to live after 10 days i woke up i was blind couldnt talk could only move my head my eye sight came back first then the feeling came back in my arms then my left hand still cant use my right hand properly then my speech came back but my legs stayed numb and lifeless cut a long story short spent 3 months in hospital having tests to find out why my legs dont move but nothing again could be found now im in a wheelchair struggling to cope with losing my legs and having fibro on top and other illness i must of been very bad in another life to be dealt this i hope with all my heart things get better for you sarahrose33 x

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Adjusting to such a big change is tough. Adjusting to a health condition that impacts on our lives is like going through the grief cycle, but sometimes we have to go through it several times.

We go through good and bad patches in the levels of pain and fatigue - one thing is to not overdo it on any 'good' days as that can just bring on the next flareup.

As for family and friends, you can try to educate them about fibro and you can make new friends who try to understand.

I had to give up my career, as it was too stressful and tiring, but I make a little money now from writing and also do some editing for people (editing can be done while lying in bed, as long as the fibro fog isn't too bad). Maybe you could think about other ways to use your skills - look online for suggestions, think about online beauty consultancy/writing?

And check you are getting all the support you can - I don't know a lot about the US system but you could get some decent advice from a charity?

fmaware.org/community/fibro...

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