I've never really been an outdoor/social person, but since I've been dealing with fibro, I actively hate going out. Any journey outdoors has to be planned with military precision and I spend the whole time worrying about getting a bad flare that will make me conspicuous in public. I hate making eye contact with strangers and I find myself making random excuses when my pain becomes noticeable. "I've just twisted my ankle/sprained my wrist/strained my back" etc because it's so much easier than explaining my 'imaginary' aches and pains
I just tell people I have a rare disease in my spinal cord that causes nerve pain, and that kind of stumps people and then I change the subject. I don't know why but I always feel uncomfortable talking about my disease and the amount of pain I have at my age. I always get the feeling people think I'm exaggerating or something.
Someday hopefully soon I'll have some scars to prove there's something wrong with me. They tried me on celebrex and other antiinflammatories and steroids before they finally decided to do a lumbar MRI and told me that those medications don't even touch my disease. Celebrex does help my tennis elbow when it gets inflamed from work though.
Celebrex did nothing for me, as did Lyrica. Currently on Gabapentin and Sirdalud (I think those are brand names) and amitriptiline which don't seem to have done much except allow me to move through the pain unlike before when I'd become totally immobile when the pain hit
Please forgive me, I live near a large city, Tampa, I go to a support group. There are other family members with a type of disease. I'm used to hearing about it that I quit listening a long time ago. When I was diagnosed. I fought it. But I get it now. Since I was s teen I've dealt with the pain. I understand. I know. There are days where I don't want to move, but I have to because o have a 2 year old who would never understand. But I understand you. I get that you want to freeze in one position and stay that way because the pain is just so bad. Thank you for posting. The question on celebrex is because it's working for me although I have a lot of bulges disk that constantly hurt. I hope you find your way through this hell.
It's okay Jesfan. I think most people here understand that we all deal with it in different ways. There are days when I just stay in bed and pretend to be dead and days when I try to fight it no matter how much it hurts. There's no right way or wrong way, we cope however feels best that day. I'm currently at my wits end because my body isn't responding to anything anymore and I live in a country where medical options are very limited. It's hard, but I try to take each day as it comes. I hope everyone gets a pain-free (or at least bearable) day
Nixie, I feel less social too. I think it's because I know my inabilities to keep up causes others to delay or alter their activities. And I've never liked being a burden on anyone. I can barely keep up to do grocery shopping, let alone the fun outings my hubby and I miss enjoying.
I didn't figure it out until yesterday, but I've been in a flare for over 2 weeks. It's the cause of my sleep changes (deprivation), moodiness, and it's added and worsened by the additional stress from family matters. Like you, I'm taking it a day at a time, a step at a time.
Sorry FlappysLady, I hope you're feeling a bit better today. Stress does tend to make things worse, but as easy as it is for people to tell us to stop stressing, we're only human and it's impossible to just flip the switch and shut it off. I hope your family matters get resolved and you can focus on getting yourself better. Love and light 😊
I had been in fibro from 5 years and from 2years ago, too severe pain kills me and quit my career. first 2 ys, I never meet people and just stay in cyberworld. And read romance fantasy books because it always finished with happyending. I communicated with authors and readers. Recently I buy beautiful cloths and accessories at internet shopping and make myself beautiful and go to a general hospital. I was very dizzi and pain on all body but I walk with pride. No one understands our pain without fibro friends. I try to teach healthy people about fibro very simply.
I think all people have concerns just like disease, financial problems, personal relationship, and family problems. I don't understand their suffering. I think everyone has their cross.
Last week, It was found that my friend's daughter-in-law has accute leukemia with very severe condition. And my ex-boss mother has gastric cancer with final stage. Very shocking days... Whenever I was in killing pain, I thought I had been cursed. And hide in room for 2yrs. But when I get out of room, I find something that only I can do. Because we understands pain and suffering. And mostly life-long. We are experts about pain. I'd like to meet them and be friends who understands pain and suffering. In pain time we have to stop and rest but it is over, we do something that healthy people doesn't.
When tough time, we can share it in this place. We don't know eachother but I feel comforts in here because of you. We fight same pains and similar concerns and I'm not alone. You are not alone because we are your understander and friends. I pray for you have a comfort time.
Dear Lisa161, you must be tough time and we all understand your feeling and suffering. Please don't look at frustration itself. We must look at somthing without fibro. It is not easy. But we have a choice to what we see or not. We can count what we lost. And also count what we do now. That choice make us who we are. Now the storm of pain and suffering hurt us, but we can stand up against it. Please be courage. It just wind will go away. We can survive and be better people who can understand the other patients' suffering and pain. I pray for you. Love you.
Hi I'm new. I have multiple health conditions including fibro for 12 years. I'm in my forties and was active before the pain. From 12 yrs when all this began, we have moved 5 times to different states. It's been very hard to be who my family needs. Many limits have been made and we have needed to work as a team more than ever. It wasn't fun at times but it made us all stronger. Looking forward to reading you posts.
Jesfan, I take two celebrex daily. I appreciate everyone's openness and honesty. Others don't understand and lack sympathy. Sometimes I believe they don't even care. It's great to be able to come here a place with like-minded people experiencing the same or similar issues and share with those who understand. I've not found any support groups in my area. I would love it if it were. It's easy to become isolated due to the changing health status and decreasing feelings. But isolation isn't good. It can lead to other problems. So whatever you do fight the desire to isolate yourself from others. I have to remind myself of this too.
I'm new as well. Been searching for support groups in my city, haven't had any luck. It's difficult not being able to find someone that can understand what you're going through. Family seem to think I'm exaggerating. It is very easy to fall into isolation when you're being judged. Just have to keep on hanging in there. Glad I ran into this site.
I can definitely understand that, I've been in pain since my preteens and I'm just now trying to get a diagnoses, everything comes up negative, and my latest doc basically said I'm fat and lazy instead of trying to find out the root diagnosis....
Support is non-existent where I live, so this group is a lifesaver for me. Fighting with doctors to get any care at all, but they've no clue what I'm dealing with. I was sitting at my desk in tears today and ready to die from the pain, but people just think you're exaggerating and seeking attention
I'm so allegric to many medication that the fibro makes me hide from the world. People don't know what my life is like. I keep getting told to lose weight and exercise more and I will be fine. I have lost jobs due to the medication that I take 😕
Totally understand where your coming from. I have sarcoidosis and they think fibromyalgia to waiting to hear results in two weeks. I find I don't want to go anywhere because it takes too much out of me. A simple bus journey can zap my strength. And I find I get dizzy outside can lose my balance for no reason. I also have this fear that I will fall because I don't have to energy to get from one place to another. And I get so cold as here in UK temperatures are low and the icy wind cuts through you . Also I find phone calls draining and I can't concentrate. I don't go online often for the same reason . Like us all ...I wish I could wake up and it's all gone as quickly as it appeared take care all 😊
So many new faces. Although I am sorry you need this app I am so glad you found it. :)
Am still recovering from knee surgery so not online as much.
Nixie - I understand the wanting/needing to withdraw from life. Many years ago I ran my own support group and did a lot of advocating and teaching others. Even put together a book of people's stories and helped organize a March for Awareness in Washington DC. Then my fiance's cancer took a turn for the worse. I took over running his group, my group and traveling to his home 360 miles away then back home to my daughter. She was 17 but still needed me. I was a single mom. When Keith died I crashed. Had been living on adrenaline for too long. That was back in 2003. For a year I withdrew from everything. Both support groups, my family who not only could not understand my illness but also my relationship with someone I met online. They never understood the profound impact losing Keith had on me. So I loved for my children but it really wasn't living. Now? I still get overwhelmed at times. And find myself withdrawing. I have 2 friends who refuse to let me "shelter in place".
Long story to say I understand and to suggest you make a pack with one or two friends so that if you go "silent" they know to reach out to you. Kind of like a buddy system.
Hope that makes sense. ((((((( hugs ))))))) hoping today is a better day for you hun.
I'm undiagnosed and, despite lots of docs, I only know it hurts when I'm stationary. So often people want to go out to a movie/dinner/drink and it scares me because it would mean I would have to sit for a long period of time. And other people don't get it, which isn't helped by the fact doctors dont either. So I make excuses too. Find other reasons besides my fear of a spasm/cramp/flare to not spend time with people. And it pisses me off that I resort to this, but I don't know any other way either...