Looking for insight
Hey peoples. Recently diagnosed with fibro and I have so many questions to ask you guys! (Since it’s such a big community I can figure out whats going on) I want to know what/of I need to be prepared for (possible wheelchair, disability, hospital? Ect)
I have very precise points where I have pain, it feels like I have a big bruise (was in martial arts for a bit I remember the feeling)
I have what feels like the start of a bladder infection (the urge to go right after you’ve already gone) but it will only be there for a day.
Quite itchy from time to time (about once a week) how long should a flare last? I am too scared to talk about this with the people in my life. Can anyone help me our? Thanks
Hi there, I am Rose. I suffer from this disease and unfort. have had to file for disability. You are in the right place. What kind of questions do you have. I can give you some insight from my point of view on how I live and how I feel but each and every one of us here basically have the same issue: PAIN. I feel like the pain is excruciating at times, I cry in fact. Some days are better than others. Yes, feeling bruised, def a part. You actually might want to make sure you don’t have a bladder infection, I am a nurse as well, just make sure you don’t have that too or trying to get one. I would def drink plenty water. Yes, having itchy skin is part of this wonderful disease, lol. I have to smile at this point. I am not sure why you might be scared to talk to people about this but we are here for you, rest assured. I have been on here a little while and have found this is the best place. I have had to vent on here as well, I get scared, I have so many emotions with this. I can tell you this, talking to people that also have this does help. I hope this has helped. Again, come back and get answers or just read what others say. That will def help. Anything else I can do let me know. I am listening!!!
Looking for insight
Fibro most definitely is not my friend, because it attacks wherever and whenever it wants. It does not care if you are all set to go to your grand daughters first ballet recital or not. It picks and chooses what part of the body to go after also. I have total empathy for any and all who suffer from Fibro/CFS, because I am one of you. I will never pretend to be a warrior to this illness, cuz it knocks me to my knees each and every time. Sometimes a week to 10 days with a couple of good days in between, which I truly relish every single minute with my grandchildren.
Hi Serena, my name is Karen and I would like to welcome you to this group. I understand why you don’t want to talk to people about it - I kept my diagnosis to myself for a long time because otherwise I felt like I would just be complaining all of the time. Also, many people don’t understand FM/CFS. Like you, people first diagnosed have questions. We find our own answers because each case is different. You asked about how long flare-ups last. I consider a flare-up to be when I feel like nothing is helping my pain and I feel like when I lay down I may close my eyes and pass away from this life just from the pain. This can last up to three days for me. Please don’t judge how your flare-ups will be by mine, but I’m just sharing my own experience here. You also asked about a wheelchair. I asked my doctor about a wheelchair and she said that it isn’t recommended because it would discourage waldking. I plan to get one, however, because if I don’t have one, I will miss out on going places that I can go if I have a WC. My husband is having a hard time accepting my pain and weakness. He doesn’t want to see me in a wheelchair. He has always seen me as the worker that I always have been. I just cannot function like that anymore. I have heard the dame things from other members on this site. I am glad that you are a Warrior - you’ll need to be one. Some days you may feel like that warrior, others you may not even feel like you can even walk 10 feet. It can be hard not to be discouraged, but remember that you are not alone and we are all on this journey together. Be blessed.
I’ve had fibro for over a decade now. Regarding your questions, I am sure everyone has a way of coping with it differently. You mentioned bladder irritation. It is possibly a UTI. I would suggest this remedy and please do try. Add teaspoon of cumin seeds to 2glasses of water, boil it until it is 1glass. Cool it slightly and drink. You can do this anytime. Its very healthy and works for UTI related symptoms. regarding wheelchair, I wouldn’t suggest considering it. The more you stop moving the worse it tends to get. See if you can try yin yoga. It works with the pain and keeping you active. Acupuncture helps reducing the pain. Good luck
I am also a cancer survivor who was recently dx’d with Fibro. I am only 3 months into the dx. So far it seems as I have been in one big flare up. The worst part for me is the difficulty sleeping. I also have breast implants put in last summer since I had a double mastectomy. I am wondering if that may have caused my Fibro.
You are a warrior! Every day you get through with this makes you one. So does surviving the days when you can’t do the things you want to do! Positive self talk is important and you’ll find plenty of support here!
Sadly it’s trial and error finding what works to help you- natural remedies and medications are discussed in many threads and are worth a read. One thing that is consistent is the need to be as physically active as is possible for you, too little activity makes things more challenging. If you can find a physio who understands the condition that will help in choosing the type and quantity of exercise to do.
Remember- do what you can and be kind to yourself. When you can’t do something it is not your fault, hard as that is to accept (I haven’t gotten there yet, I beat myself up over what I can’t do, but I’m working on it!). Know you are never alone!