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How do ya'll cope? Apologize now for the rant.

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Fibromyalgia
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Posted 7/28/2008 10:26 PM (GMT 0)
Hi Everyone

 

I have not been diagnosed yet...(appt w/ Rheumy Sept 29th) but Chiropractor has done the pressure point test.  I am in so much pain right now.  My hubby is worried sick because all i can do is sit and cry because it hurts so bad.  My legs are hurting so bad that they feel like they are going to fall off...and would probably feel better if they did.  I am so discouraged and literally pissed off because of the pain.  I am so aggravated because 1.  I have no clue what is wrong and 2. I cannot enjoy the things I used to enjoy like 4-wheeling...hiking in the woods etc.  How do ya'll cope with the pain and and with the mental issues of not being able to do the things you once loved?  I am so sad because I have no control over this.  I will go for a couple days where I feel GREAT and then it's like someone has hit me with a bag of bricks and I can barely move.  People at work think I am crazy...my daughter just think I don't want to spend time with her and my hubby as I said before is just worried to death.  What can i doto make this any better?

 

Missy

Posted 7/28/2008 10:46 PM (GMT 0)
Time.

I think that's what you need right now, a little time to get used to your limitations. It does suck, believe me I really feel for you. I don't have a dx yet, and I think that makes it all the harder. I went through a flare where I just couldn't believe the pain I was going through. I thought if this is what fibro is like, how will I ever cope? Luckily the flare didn't last long for me. I am fatigued, and my legs ache, but that deep pain is gone. I can be a little more involved with the kids again. I felt so guilty not playing with them, and I was yelling way too much. Someone here said to be up front with the kids. "Mommy's muscles are really sore right now, adn I need to rest." I don't know how old your dd is, but kids do understand more than we give them credit for... and they are very forgiving. I still can't do everything I was doign, and it ticks me off, but I'm learning to accept it. So instead of stressing that I can't go in my garden, I give myself permission to lay on the couch for 15 minutes. And I know that by resting, I'll end up feeling better in the long run. We went camping last month. Like you, I love to hike. I didn't get to go at all, I was so fatigued. I was very disappointed. But I cheered myself up; you see we are goign camping again this weekend, and I'm hoping to feel better adn hike this time. :)

I hope you feel better soon. You just need to tell yourself it can't last forever. Enjoy your good days when you have them.
Posted 7/28/2008 11:08 PM (GMT 0)
Missy,

Everyone here understands where you are right now. I still have many days where I am down in the dumps because I can't do something I wanted or just feel like an idiot because of the fog. It's really hard but you can have fun and do some of the things you enjoy. Acceptance first and then figure out how to work the things you love into your good days (but don't do to much). I am learning that I can accomplish much more in my day if I take a lot of breaks.
Once you have your diagnoses you can start working with the doctor to find ways to reduce the pain. Hang in there, things will be better and we will always be here for you.

Meggie
Posted 7/29/2008 9:56 PM (GMT 0)
Hi Missy,

I'm so sorry you're having such pain and misery right now. Like Meggie said...we all know what you are feeling.

Is there any way you can get a second opinion, change doctors, anything to get some relief? Find a good university/teaching hospital and give them a call. Ask for a referral to pain management clinic until you get a dx. The least your doc should do is offer you some relief of the pain. There is no reason to let you suffer so long just because the rheumy he chose is booked up. That's shameful treatment and you deserve respect. Ask hubby to help you make some of these calls. If need be go to the ER when the pain is bad. Tell them you're not just there for pain meds but to please get some help for the long term.

Keeps a pain journal! Take it with you whenever you go to see any doc and/or the ER. Here's a link to a great journal you can print out for free. I keep this one up so not only my doc will know but I can also see what aggravates my pain and hopefully control it better.

Keep in touch and feel free to email me.
CHutzie
Posted 7/29/2008 10:58 PM (GMT 0)
Missy, waiting two months to get into a rheumy is ridiculous when your in pain. If you can't get in as an emergency patient, keep looking until you find someone that will take you. All doctors keep room for emergencies on their schedule.

 

Like Chutz said pain docs or ER whatever it takes to get help. I know of one member that got a dx at the ER.

 

Learning to live with fibro is a process. Don't stress out is the #1 thing to learn. It does us no good to stress and only makes things worse. It will all come with time as you learn your limits. Give yourself a break and don't become your worse enemy. I tried that and it didn't do anything good for me.

 

Use lots of moist heat in any form you can get.

 

Hang in there and you know we are here for you.

 

luv and hugs

Marlee

Posted 7/29/2008 11:44 PM (GMT 0)
Hi Missy,

You have been given some wonderful advice from members who have been what you have been through.

It is kind of like starting all over. You have to learn your limitations all over again. You may end up changing hobbies and doing things that are easier now. But it can be a learning experience. And changing what we do isn't all that bad, we just find easier ways to do things.

There was an interesting thread, I can't remember what it started as, but we ended up giving eachother tips on how we do things easier. It was a lot of fun. Just stick with us and we will help you adjust to a new way of living. It isn't always easy, but it can be done.

Have a great evening,
hugs, Karen
Posted 7/30/2008 12:02 AM (GMT 0)
 

Dear Missy,

 

I have been dx with this disease for 14 years. Every time that I have an episode, I'm scared to death that it won't go away this time. All of the ladies who have told you to pace yourself when doing housework or whatever else you do are correct. Try to keep on as much of a daily schedule as you can.

 

Be brave. This disease is a real head trip. I was deathly sick from the end of March(08) until the first week of June. I didn't think it was ever going to go away, I couldn't handle it anymore. That is fibromyalgia.

 

love & hugs (small ones),

searching

 

 

Reason for edit, we aren't suppose to mention anything remotely connected to suicide on the forum.  Thank you for understanding...

Hugs, Karen...

Post Edited By Moderator (getting by) : 7/29/2008 6:26:22 (GMT-6)

Posted 7/30/2008 12:05 AM (GMT 0)
Thanks everyone for all your suport and ideas. I am feeling alot better today...the pain is so much better. But now the anxiety is acting up...go figure LOL My doctor would give me something if I ask for it...but up til the other day the pain has not been that bad...I mean it hurts but nothing I cannot tolerate. ( Ihave a very high threshold for pain) The other day though it was just horrible...and if it had went past that day I would have went to the ER or asked my doc to give me something. I have a hard time taking pain meds because they space me out..Lord knows I'm spacey enough without it LOL.

Does ya'lls pain come and go? Is it really bad one day and then the next you feel alot better? That's what happens to me.
Posted 7/30/2008 12:12 AM (GMT 0)
My pain comes and goes. Some days are worse than others, though I always have pain. I have a high pain threshold too. The fatigue is what really bothers me. When I am so tired that I can't even talk, though some people don't consider that a problem.LOL...

But there are good days too. It is just nice when you have more good than bad. Don't give up hope and don't let the stress get to you. You will learn that you have to let some things just go by. Stress just makes the pain worse.

I hope that you feel better.
hugs, Karen
Posted 7/30/2008 2:56 PM (GMT 0)

Today I am NOT coping. Tomorrow I may be. But for today I am NOT and I know only those here understand! I hurt, I hurt, I hurt. I want one normal day to crawl out of bed without hesitation that my feet won't hit the floor hurting. That I move normally to the restroom and get dressed in a minimum amount of time.

I think some extra stresses with family issues has thrown me even deeper into this flare if that is possible. I am on the verge of screaming and crying like a child. I'm tired, hurting and exhausted from trying to function in a normal world, continue to work, interact with friends and family. I need a vacation of just me and some alone time to re focus.

Surely tomorrow I can cope better...today I'm having difficulty.

kaymac sad

Posted 7/30/2008 4:03 PM (GMT 0)
Fibro is forever changing. Yesterday I started having the burning pain all over my body again. After going through that for two weeks the first part of June it does cause some anxiety when I start feeling it. But we had a storm to go through and the burning went away. I can feel it starting again this morning, another hot humid day with storms in the forecast. I'm not going to sit here and dwell on it and start thinking what if it never goes away cause I know it will. I'm going to pick up my 11 yr old granddaughter for her two day visit. She loves doing crafts and things so we will keep busy.

 

I know how bad it can hurt but you have to cop an attitude with fibro and not let it win. I had horrible anxiety for years and made up my mind it was not going to stop me from going and doing the things I loved to do, that was before fibro.

 

This forum has so empowered me against fibro. Yes, there will be times when it gets so bad I will be on here venting like everyone else but I'm not going to think about those times til they get here.

 

Kaymac, I haven't found away around family stress. There seems to always be something in my family to worry about. These people won't give me a break and they have no idea how it affects me. But I am trying very hard to change the way I react to the stress, in short of moving away and not leaving a forwarding address lol. Which is very tempting somedays. tongue I hope it lets up soon.

 

luv and hugs

Marlee

Posted 7/30/2008 4:13 PM (GMT 0)
HI Marlee,

I am leaving for the day to go see grandchildren. Yeah! I miss them so much.

Have fun with Destiny. I know she loves spending time with her grandma. You should have a good time together.

Have a great day,
luv and hugs, Karen
Posted 7/31/2008 12:36 AM (GMT 0)
I too tend to have more pain when it is hot and humid. You are the first person that I have talked to that also has this. I have a constant soreness in my biceps, my hips, and the calves of my legs (please excuse my spelling). I have had these aches for so long now that they seem to be the norm. There is no pain medication that will stop it. I have tried everything from Tylenol to Oxycontin. Even the Lyrica won't relieve this. Luckily, it is dull and achy, easier to put up with than the burning pain that (for me) comes with the horrible nausea and dizziness when I have what I refer to as an attack.

 

Here is a good thing that has come with the suffering. I am learning to handle stress better. I agree with the person talking about family stress...my last attack came after a call from my father,and I am 57 years old! My youngest son, who is 24, moved home after attending college, has been here 3 years. He is a good kid, but it is next to impossible for a young person to move out on their own anymore. My second youngest is getting laid off August 1st, he is 33 and going through a divorce. He is planning on moving into our spare bedroom and I am already having a testosterone overdose. Now if I can handle this stress, I'll know I have it figured out.

 

I agree with the person who said not to give up the fight against fibro. After I have an attack, I have to struggle to get myself in the right mindset again. You have to think of your life as you are in the present moment. Don't stress about tomorrow. It will come and you will get through it. Trust in the strength of your mind.

Posted 7/31/2008 4:04 AM (GMT 0)

Hi Missy,

Hang in there.  I remember when I had my first symptoms.  I was in so much pain and so tired, I just sat on my couch and stared at the wall, too tired and in pain to even read or watch tv.  Once I was diagnosed, at least I knew what I was up against.  It will get easier, after you find things that work for you.  As the others have said.  You just need to keep fighting!!! Know that you are not alone. 

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