Hi Jodie,
Thanks for reaching out and sharing your struggle, I’ve only been diagnosed for about 4 months now and it’s been hell. I’ve also been diagnosed with Pseudotumor Cerebri & PCOS and my symptoms all overlap but triggers make it unbearable for me. People w/o Fibro try to understand but get frustrated if I can’t keep up with them or when Fibro fog takes over and I forget. Doctors called me crazy and said it was psychological because they couldn’t find anything. Before I lost my job, I was denied long term disability because “it didn’t show up in scans like a broken leg.” Had to leave school with only 2 years left before I would have gotten my PsyD and I just got married in August. So a lot of life changing events before 30. Just looking for some support and people to support that truly understand how I feel. Thanks for being one of them!
If I am replying to this late, i'm so sorry! It's because i joined just last night. I don't know your symptoms, severity or number of episodes but I'm hoping that sharing my experience with this dreadful inconvenience of an illness may help in some way. My pain started about 10 years ago when I don't even think fibromyalgia was as commonly talked about as today. So...I feel like I've been living with it for every. I'm 43 now. One day I woke up like a bus hit me - no warning, no prior issues I can point to. I was scared to death. The pain started from my head to toe, even my eyeballs. I can talk on and on about how I feel but most of all, I wanted to tell you that my pain has gotten a lot better over the years. Hang in there and if there is any thing I can answer please let me know.
I am having hard time still, feels like most people don’t believe me, and think I am a hypochondriac. I am at the point I don’t want to even talk about it. I get so mad at myself, and want my old body back, then I get depressed and angry with myself. Where I live there really isn’t any support groups. I was glad to find this place. There are times when the pain gets so bad, I don’t know what to do. I am not suicidal, but there are times that I just would wish to go to sleep, and not wake up. Then I get my good days, and tell the Fibro it isn’t going to win.
I hear you. I hate hearing myself talk about it too...and I think my family maybe rolling their eyes behind my back at times! It is depressing but this is NOT YOUR FAULT so I hope you are kind to yourself. I don't know anyone else who has fibro so I gave up talking about it to people around me but whatever your symptoms, I think we've all been through pain that is excruciating both mentally and physically. Be kind to yourself and allow yourself to do what makes you feel better even if it's just a little. That's what I try to do. I have zero answers for you but only share what I have been trying for years! I hope you feel better
I am going on 15 years with this wonderful disease. The problem is that you can't really explain to someone how you really feel. Plus you don't "look" sick so therefore people think you are fine. I encourage you to keep a diary. That has helped me in the past. keep track of everything you eat and do in a day. Eventually you will see a pattern. Like feeling crappy after eating certain foods. I was doing so so for awhile and now the flare ups are coming on full tilt. I am planning to start a diary up again. i guess my body has changed and new things are irritating now.
I totally understand about your suffering. I have been diagnosed over 12 years and am currently in a very bad long lasting flare up. I am going to try pool therapy in a heated (91 degrees) salt water pool. My first time in the pool is day after tomorrow. I am so hoping it will help give me some relief. This flare up has lasted me since June this year so over 3 months. I am going crazy trying to get some relief. I really do understand how you feel and am more than will to be a shoulder for you to cry on if you need it. Hang in there…
Thankyou so much for your email I hope you are feeling abit better? Normal equals never for us now Hun it’s bloody useless and I can’t get any disability help or anything it’s such a punch in the stomach when everywhere you turn for help you get shutters pulled down in your face, oh please let me know how hydro works for you as I am trying it next week also ??xx
Hello - I have been in the pool twice this week and I must say it feels wonderful while I am in it. The pool is heated to 91 degrees and is also salt water. I did some very basic movements with my physical therapist and found I was more flexible in the water. The minute I was in the water I almost felt “normal”. I am hoping with continued use of the pool I will be able to get myself at least less in pain than I have been. I am sore after swimming because I am using a lot of muscles that I haven’t used in a while but that is to be expected. I am looking forward to the next time I can get in the pool which is next week. Good luck with hydro works for you. Please let me know. Take care and have a nice weekend.
I am starting my hydrotherapy next Tuesday so am looking forward to that and yes I went in a friends hot tub at 42 degrees and it was the best night sleep Iv had in 2 years and haven’t slept like it since the only way I can describe it is it felt the hot water defrosted my muscles and the heat went to the bone and it was the most relief I have ever felt so I’m hoping hydro will help me xx
Hello Elaine,
So glad to hear the warm water therapy is helping you. I know when I am in the pool it feels so much better ( don’t do it often enough, tho’). Most importantly, also, to find something you can enjoy is a massive boost to our mood. Carry on the good work!
Take care, Anne
Hello JJB123,
I manage my fibro as best I can. Lots of ups and downs, same as many of us on here. I have accepted it is my ‘new normal’, (very hard to do). But I refuse to waste my energy constantly battling against it. I am fortunate, in a way, that I don’t work anymore, Fibro took that away from me, tho’. Also, I don’t have dependent children (although my daughter and grandaughter live with me). My granchildren are a joy, and I try to focus on them. How about you?
Take care, Anne
I hear you, sister! I hate this illness, I hate what my life has become, I hate the loss of independence…I just want it gone! But, I know I can’t get rid of any of my chronic illnesses, and the Fibro is the first one I can’t even control! It takes a huge toll on you mentally as well as physically. Some days, you just want to give up and wait to die. Other days, you refuse to let it defeat you. Most days, you’re somewhere in between. This is completely normal! There’s nothing wrong with that reaction to this situation. You are not alone in this at all; we all go through it, and we all get through it. Just hang in there, as tomorrow you may have a really good day!
