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7 Replies
Apeter428 - October 8

I have been on quite a roller coaster of emotions, as I am sure you all have too.
I am crying now as I write this. I am so frustrated. I have been seeing specialists for about 8 mo for various conditions. Last month they all put it together that I should see a rheumatologist. My mother has Lupus, Graves and Fibro. I have what they feel is the butterfly rash and all symptoms of auto immune diseases. I finally saw the doctor and ran my ANA panel. She said it all came back negative. (Good, I know). But I can't stop crying.
She said she thinks I have Fibro? Thinks?
I am so confused. I am 33 and feel like I am losing my mind. I have pain, daily. Can't function in the mornings. I forget what I am doing in the middle of doing it and a host of other issues. Including pelvic floor pain that has gotten so bad I see a PT every week for the past 4 months.
I feel like people think I am nuts. Or a hypochondriac. I guess I am writing here to vent. I bet some of you went through the same long struggle for a diagnosis. I just want an answer and help. I can't keep going on like this.
Has medications worked for you? Have you tried exercise? What can I do??? Thank you for reading this.


Desi - October 8

Apeter, I too am frustrated an scared as hell when I read all the posts..

I was diagnosed a few years back with Fibro and a question mark for Lupus. I have managed to only have a "life interruption" from this condition occur about once a month. I am extremely active,playing sand volleyball four nights a week seems to keep my muscles relaxed.I get the butterfly rash often too, but sun exposure doesn't cause trouble for me. I sleep well, but often have nigt sweats.
However, the last few months I have been a complete mess.. Every morning I am stiff, tired, and barely get to work each day. I tried Savella this past summer- didn't do a thing for me. Only thing that stops a flare up is heavy dose of prednisone along with tons of Hydrocodeine and/or Tramadol.
I am hoping that when someone responds to you they can offer some guidance on how to avoid flare ups. How not to have to take pain killers everyday. How to have confidence that when I go to sleep at night I will most likely wake up feeling refreshed.
I have had intense pain for six days straight now and awaiting results back from more blood tests. This time I have the usual muscle aches, temper rises, fatigue, but also some major joint pain. The doctor seemed concerned with joint pain, not sure why..It breaks my heart to see the look on my husband's face when I am hurting..

Sure hope the responses give us both some insight and wisdom on what to try.


solanadelfina - October 8

(Gentle hug.) I feel for both of you. The changing seasons and rain have been very rough and painful for me as well.

Apeter428, sweetie, it's good that they sent you to a rheumatologist. If it is fibro, it's hard and scary at first, having all the symptoms and not knowing about it, but things are often easier when we have a label for it. Once the label is there, we can get started on getting things under better control.

There are plenty of pain medications out there for people to try. Some take Lyrica, some take Cymbalta, there's a new one called Savella, while my best success has been with tramadol. Until that happens, things we can do for pain include hot baths, GENTLE stretching, heated mattress pads for chilly nights, Tai Chi, swimming in a heated pool, or getting a gentle massage. Those rubber-tipped massagers that are sold in bath sets are wonderful.

How's your sleeping been? That's also very important, having a bed and pillows that are the comfort level you like best and the right temperature. My guardian angel doc just started me on amitriptylene, and it's been a BLESSING. Most of us take pain and sleep meds to help us get the rest that we need.

Does making schedules or lists help you remember things? I have my morning and evening 'rituals' so that I don't forget things- take my meds at this time, do my stretches at this time.

Just as important as caring for your body is caring for your spirit. I start off my day reading funny webcomics, and end it watching comedies with my mom. Keeping with your favorite hobbies and pampering yourself are very important, too. If you're spiritual, prayer and meditation can be a huge help. Don't be afraid to reach out to friends and family or even counselors to talk to.

This is a huge change in our lives, but not the end of them. Don't worry about what other people are thinking, just take care of YOU. We'll be here to answer questions or if you want to rant, whatever you need. :) I'll say a prayer for you tonight.


Apeter428 - October 9

Thank you for your comments and support. I have really been affected emotionally by my pain and fatigue it has led to some depression.
I have been seeing a pelvic floor specialist and physical therapist for the issue for months. It hasn't helped me. I had to figure out to make an appt with a rheumatologist on my own. Even though they had fibro in their notes! I am sick of other doctors telling me to see a therapist it is stress. NO IT ISN'T!!
My marriage is deeply affected with the pelivc pain so bad we can't be intimate. We have twice in a year. Wow, tmi sorry. I just don't know where else to turn. My marriage is falling apart because he doesn't "see" physical signs os sickness and no intimacy for over a year doesn't help. My kids suffer because I am not the mom I want to be. And I work full time. That is a joke now. My memory is so bad right now. I forget sooo much. I want to go do something and forget what I was thinking. I have created a cheat sheet for customers when they call. So I remember everything. Bills- LOL. I try. That is all I can say. I try.
My house looks like a tornado hit it. I can't clean. Getting out of bed is a chore. I am drowning here and feel so helpless. I am glad I found this site. It is helping me to better understand this. To understand I am not crazy. Or a hypochondriac.
I was reading some posts from husbands on the Family support board. I was crying so hard. Just reading what they feel and think I can only imagine what my husband thinks. He didn't sign on for this. I can't remember the last time I had fun or did anything that required more effort than getting up. Thank you for reading. : )


solanadelfina - October 9

Maybe your husband would be willing to come with you to an appointment with the rheumatologist? He could also come on here and read some of our posts, or ask questions himself on the Family Support part of the forum. There are also a good number of books out there, such as Fibromyalgia for Dummies, and reading it could give him a better idea of what you're going through. As for intimacy, some people spend more time cuddling, or getting close in other ways. That could also be something to talk about with the doctor.

Fibro's not the same thing as stress, but it certainly brings a lot. A good support system is vital, between family or friends or fellow worshippers. A lot of us see counselors to help us get adjusted to this new life, because there is a big difference. "We err when we believe that only weakness needs support. Strength needs it far more." We can also still listen and be there for family members.

It can be very frustrating looking around at what we were able to do and realizing that there are some things we can't/shouldn't. A lot of us will break up housecleaning into smaller tasks, such as dusting today or trying a load of laundry that day.

I think the most important thing is learn to cut ourselves a break. Our lives are different, and the fibro isn't our fault. If our houses aren't as clean, or things as 'perfect' as they used to be, it doesn't matter as much. I like to think that we're purple orchids now, instead of the 'normal' red roses, and as such shouldn't compare ourselves. I've been trying to learn to ask for help and say 'No, I shouldn't do that', and it's not easy. But feeling better is more important.


smilinhere - October 12

I have noticed the weather plays a big part in how I feel. Newly diagnosed, but had symptoms for years until the Dr., took me serious. I am usually a happy go lucky person, who does not complain until I could take it no more! Today is bad, I wanted to lay back in bed, my legs are so heavy, arms heavy, taking a shower this am sucked. I cried, I was so exhausted. I feel like Im a baby whinning bout it, but this is real. I feel everything. When someone touches my shoulders I cringe it hurts, like a bruise. My left thigh is burning now, and tingly, what the hell?????? My brother has lupus, real bad, and thank God I have Fibro. That I am grateful for. I learned that cousins of ours also 2 females have lupus, and a male has fibro, all on my mothers side, all same family yet the Drs. say not hereidtary. What? I take lyrica nope does not work. Anyone happen to know if foods pay a role? I have noticed that when I eat fatty foods I hurt more! And I love burgers and fries. I also stopped smoking after 35 years, thinking that would help, am I angry you bet ya! I just want someone to talk to who share what I feel. I've been married 38 years and my hubby is not sympathetic at all. I can't stand it anymore! ;( HELP


fibrofreaked - October 12

I read these posts tonight and I feel the burden. I am recently diagnosed and so far my husband has been really understanding. But I wonder how long until he is so frustrated at how our lives have changed that he can't take it anymore? Fibro is scary. I was thankful to not have lupus which is in my family, but I feel so terrible some days. I don't understand how one can look so normal on the outside and be in so much pain on the outside!!!Savella helps the fog but not the pain. Not at all!!!! I wish my husband would read the stuff on here as well but maybe I don't want to scare him more


Apeter428 - October 12

Thank you for your comments. I was tested for everything but it all came back normal- for now. Hence the fibro diagnosis. I am so worn down. My next appt is Oct 20th. I need something. I am taking Naproxen right now and it doesn't help. I was given Flexaril (sp) from the pelvic floor specialist but that knocks me out. So that's a no go. I need help with the memory and pain. Today I had "hot spots" on my shoulder and elbows. Is that normal?? And does anyone here have the face mask? Does fibro have a face mask?? I am sorry we are all in this, but glad we have each other to vent.
smilinhere- I heard Lupus and such is genetic. And I am here if you need to talk. My husband is hard to deal with. He did so good this weekend though. He watched the kids while I slept most of the weekend away. I needed it though. We have a 3 year old and 6 month old. I tried to clean some this weekend. I got my daughters clothes folded and her bathroom tub and sink cleaned. Then I had to quit. The intimacy part is what is so bad. I can't even cuddle. : ( It ends in a fight. Either I am too sore or he trys something and I get mad.
fibrofreaked- I am so with you! EVeryone has a hard time seeing I am in pain and tired and depressed because I "look normal". Maybe if I twist my leg around or break my arm they will get it. UUGGHH. I work full time and have my kids, house and husband. Something has to give. I would quit but we need the money. So my house looks like a bomb went off! I am so sickened by it. I feel like it's a catch 22. Feel bad can't clean, don't clean feel worse! Sorry for the rambling. I am just so happy to find people who understand. THANK YOU!



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