Hi everyone, I'm in the process of working on a diagnosis. I've seen numerous doctors and had so many tests to count. My doc is now thinking I might have fibromyalgia. My symptoms have been on going for years and have drastically gotten worse in the last few months. I'm just wondering if anyone has any advice on how to cope with the pain and fatigue and how to maintain a strong relationship with a significant other. Or even just advice about living with fibromyalgia in general. My boyfriend is very supportive but I just want to make sure our relationship goes strong despite my medical issues. I look forward to hearing any advice any of you feel like sharing. ☺
Lucky13, I've been dealing with fibromyalgia since 2008, though it wasn't officially DX until 2011.
Dealing with the pain means medicating your way through each day; some days more, some days less. I have major med allergies and cannot take 95% of main pain meds. I currently use Ex-strength Tylenol for minor pain days, Arthritis Tylenol for medium-pain days, and Tramadol for major pain. They just gave me Rx for Gabapentin, but I have a 2 hr cognitive function test tomorrow and was told to hold off until after the test. Pay close attention to learn where your body is in the pain range, so you'll know how to deal with it. Massages, warm baths & showers, and Voltaren gel is part of my treatment.
Dealing with the fatigue is a little trickier for me. I have learned to listen at the first sign of fatigue, and rest periods are a must. If I push through without resting then I go from fatigue to exhaustion in nothing flat. Rest, massages, relaxation, baths/showers...all for both really.
On the relationship, be open and honest. Have your boyfriend go with you to appts so he can hear what the doctor says or ask questions. Don't push him away but try to include him in helping you get through the bad days.
A rheumatologist, a pain specialist, and a chiropractor are 3 of your best docs, and don't forget naturopathic med. Good luck & God bless you with finding the right doctor(s) & treatment for you!
I should also add, do not feel guilty for saying "no" when you don't feel up to doing something. Fibro affects everyone different. Read about the "spoon theory". I learned about it from others on this site.
Absolutely, watch the 'spoon theory but you don't look sick' video together. Find strength together not isolated. Flappys is right on every word! It is very hard, you will have days where you cannot stand yourself so how could anyone else love you.(that is in your head) Just be totally open and honest with eachother always. Remember to apologize when you are hurting and grouchy. You are a team and really did not mean to bite your partners head off just because you were hurting...we all have done that and it sucks. That is the last person you want to lash out at. Vent here we will all try to help you. Welcome to the family.
Completely agree with Flappy and LMB! Accepting you have a chronic illness is tough. At least for me. I think once I kind of accepted it last year, I came to some kind of inner peace. Not to say I don't get down and frustrated easily. Actually thinking of seeing a therapist that deals with patients with chronic pain etc. think it might help as it really changes one's life completely. Pacing yourself in activities is crucial though difficult because when you feel ok or actually good, you want to be productive but you end up 'paying for it' the next day. Very frustrating. Including your boyfriend in how you feel and what you are going thru instead of pushing him away is crucial. Although very supportive, I do notice a point where my husband doesn't really want to hear every ache and pain, but I'm okay with that as it can be exhausting to hear it all the time. My mom has similar health issues as me but 30+ years on me and it turns me off when she complains all the time. Lol. It's a fine line I guess.
Thanks for all the advice I really appreciate it. I'll definitely check out that video. I'm working on trying to do things when I can especially with my boyfriend because I know it's hard on him when I don't feel up to doing things. And I'll try and keep in mind he probably gets tired of hearing me complain.☺
Lucky13- (love the name) we literally will just say I love you and I really care but I need to chill okay. That may be to me to stop venting or to him because I might not want to hear everything about his day. The deal is we do not take it personally. Like your momma taught you always be grateful and never take anything/anyone for granted. If he is the right one he will fight with and for you. Good luck it is hard out there!