Hello everyone. I am joining to meet people who are suffering like me who understands the pain I’m going through some days are hell and others are bearable. The question is HOW DO WE COPE???
Hi Leanne! Welcome! The Drs are the key, finding the right ones who listen, believe, and truly try to care for us. Sometimes it takes a mix of Drs, Rheumatologists, General Practitioners/Internists, Holistic Drs, Chriropractors, Pain Management, Psychologists, Physical Therapists...
In my opinion, the Rheumatologist is a MUST for each and every one of us! They will insure that we do not have Autoimmune or Rheumatic illnesses. They should be running blood tests, checking thyroid, vitamin deficiencies, hormone levels, and so very many factors.
Keep a running list of all symptoms and complaints, no matter how insignificant they may seem. Tell your Drs everything and know as much as you possibly can about your diagnosis as you are going to have to be your own best advocate!
Please use the search engine at the top left hand of the discussions page, you can find info on just about any subject!
Wishing you well,
SK
Believe it or not, coming here helps to cope. There are a lot of good tips and good people here who listen to you.
I'm currently on Lyrica, so that helps me to cope. It doesn't stop all of the pain though. So I get where you're coming from.
My rheumy has recommended exercise and water aerobics too. They may be helpful - can't tell you because I haven't tried them yet!
My dogs also help me to feel better as they are always there to snuggle up to and hug.
My best advice is go to your doctor and be firm about getting something to help with the pain. Nothing is going to take it all away but some help is better than none.
Okay gottta run for now. I'll try to think of more later.
Hello Leanne
I'm so glad that you found us Leanne. As you start reading the member profiles and the Discussions I believe you will find some of the answers to your questions so just take some time and start reading.
Hi Leanne, big welcome.x
Welcome Leanne! I am new here too, and was just diagnosed a few weeks ago. No idea how long I've actually had it, since I also have lupus and I thought that was causing all of my pain and fatigue. We have just started meds to try to manage the fibro, so I'm still feeling pretty lousy, but I'm confident my doc will get me on track. :)
I agree with SK - having a good doc or docs is vital, not only for the physical issues, but mentally. When you know your doctor is on your side, listening to you, and doing all they can to help you, it makes all the difference.
On the lousy days, I try to limit my day to things I absolutely must do and nothing extra gets done. On the decent days, I try to get more accomplished without pushing myself too much (I've had to learn, with lupus... now the fibro adds in more fatigue and pain in different areas than the lupus causes). I am lucky, in that I have more decent days than lousy ones, but I have my doctor to thank for that - he absolutely believes in keeping me as functional as possible and treats my symptoms as aggressively as I'll let him. Lol.
I also agree that sites like this (although this one is the best I've found) also help with coping. It always helps to know you aren't alone and to be able to vent or bounce things off of people who know exactly what you're dealing with.