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Posted 8/23/2012 9:35 PM (GMT 0)
Hey I am new to this forum. Basically I am just looking for someone to understand what I am going through. Because my family and what friends I have left basically think I am depressed or crazy. I find myself crying a lot lately. I have 2 daughters 5 and 12 and I feel like the worst mother in the world. I have no patience. Always asking for help. And every noise they make seems to be driving me crazy lately. I am 36 years old and was diagnosed with fibro a little over a year ago. I went from supporting my whole house, had a great job. I was very active and always on the go. To now being in bed about 20 to 22 hours a day. My husband thinks I can just push through this and fresh air will do me good. He doesn't understand that the sun makes me swell and just getting up and driving to get my daughter from the bus stop is a project and takes everything out of me. I am either in a wheel chair or on a good day using a walker. I live in maxi dresses because I can't take the feeling of anything tight on my skin. It feels like someone is rubbing my skin raw. I have swelling all over and this pain never lets up. I feel like I am trapped in my own body. I feel so alone. Friends do not even call or fb me anymore. I try and stay positive despite everything, but some days its really hard to keep my head up. I have no history of depression, but being unable to get out of bed. Put on disability and not being able to enjoy my children or my husband I guess is starting to take its toll. Oh and how can I forget I also don't sleep and now I have TMJ. I am not seeing any light at the end of tunnel and I am hoping that joining some fibro networks will help me to better cope. I am getting so lost in my emotions .
Posted 8/23/2012 10:49 PM (GMT 0)
So sorry you're feeling so rough.
It sounds like you're suffering depression along with fibro. You need to see the doctor and ask for something for depression as well as pain relief.
Sometimes chronic pain and medical worries can build up and cause depression because we feel overwhelmed.
I was diagnosed with lupus last year and fibro this year. The constant pain and stress caused depression for me. My doctor gave me paxil and I'm not as down also some of my pain lessen.
Hang in there.
Posted 8/24/2012 12:44 AM (GMT 0)
Thanks for replying. Yes I asked the doctor for something for depression. I started it last week. Today was just a really bad day and it didn't help I have been awake for 38 hours so far. Going to bed now and praying I can actually get some sleep. Thanks for ur kind words
Posted 8/24/2012 1:09 AM (GMT 0)
Dee, I hope you feel better soon.
((((((gentle hugs))))))))
Posted 8/24/2012 1:21 AM (GMT 0)
Dee have you had a chance to read the fibro101 thread yet? Btw, Welcome to HW. I know how you feel as do most of us here, it is so hard to feel motivated when everything is hurting.

Hopefully the anti-depressant kicks in soon for you and helps to settle things down. I am having a flare right now so am finding it hard to focus on posting this. I'm sure someone else will be here soon to say hi and perhaps give you a better pep talk.
Posted 8/24/2012 2:29 AM (GMT 0)
Dee,
i'm also 36 with 2 kids, 14 & 12. I know all too well the feeling of the worst mom in the world! Don' beat yourself up, you will get better and subsequently everything will look better and feel better! You dont mention if you're taking anything for pain? You need to focus on yourself and getting better and then everything else will fall in place. The antidepressant will take 3-4 weeks to work well and help you with those blues, but you also need something to help with the pain.
I was recently finally diagnosed and prescribed Cymbalta. I know it doesn' t work for everybody but for me painwise it's been a lifesaver. I' m in alot less pain, i can lift my arms up over my head and hold them there for a while!!! I haven't been able to do that for at least 3 years.
i really hope that u find what works for u soon, i really do! I feel your pain completely.
Feel better sweetheart and dont be so hard on yourself. We're all here for you! :)
Posted 8/24/2012 4:19 AM (GMT 0)
Hi, Dee.

I'm sorry you're suffering so much. As Rose said, the "Fibro 101" thread is a great one. I still learn from it and I've been here for years....it's a sticky thread so it will always be here to refer back to.

You mentioned having swelling - Fibro doesn't cause that, though it might feel like it does. That would be from something else. So often, we have other things along with Fibro.

Spending too much time in bed will actually make your pain worse! I know it's hard when you're hurting so much, but if you can do just a little bit more - and then a little more - it should help. It takes time, of course. BABY steps!

I was a young mother, too, when I was diagnosed. My husband didn't get it either, but by now, he totally believes that it's not a lack of willpower or laziness or depression...it's physical. That's made all the difference. I felt so bad for my kids, too, and always wanted to do more with them, but then no one's childhood is perfect, whether their parents are able-bodied or not. I'm sure they know you love them, and that's the most important thing. They don't judge us as harshly as we judge ourselves.

We are always here for you...so I hope you'll stick around so we can get to know you. Hope you sleep tonight!

Debbie
Posted 8/24/2012 7:08 AM (GMT 0)
Dee, as I read your post I feel your pain. I was there about a year ago in similiar situation. I couldn't get myself out of bed or even want to bath. My fibro was so out of control and I felt hopeless. My life turned around with some effort and support from friends and this site. I am glad you started an antidepressent. It takes about 2-3 wks to see some good results. I have a book that I read on depression that help me as if it was my Bible. It had a list of things also you would check off daily to keep you on a schedule. Like bathing, brushing your teeth, making your bed. It seems crazy, but that is how I started feeling better. Then you progress farther and before you know it, your walking outside. The author is Mary copeland. She has written many books on fibro and depression. Just look up her name on the Internet.

Dee you found the right place to get better. This is a wonderful place for support. My husband could never understand. So I felt so lonely, until I found this forum. I began to read other post and get ideas on how to manage this fibro. I was in horrible shape and desperate.

I am happy to tell you I am so much better. It has taken some trial and error, but I feel good most of the time. The depression is at bay. I have to work at my health as if I had a job. I told psy. Dr. that it's work to stay healthy. I hope you come back to stay and less us support you.
Posted 8/24/2012 12:18 PM (GMT 0)
Thanks everyone. And yes I finally slept, with only waking up a few times. Yesterday was rough. I allow myself at least 1 day a month to fall apart lol. @Nermada yes I am on pain meds. I tried the all natural way for 6 months. But I couldn't move so I finally broke down and took pain meds. I have tried many including cymbalta but it didn't work well for me. Now I take Opana 20mg and oxycodone , flexiral and nuvigil to stay awake. It's all working pretty well so far. I can get out of bed now for a little bit and get out of the house. But truley thanks everyone for all the encouraging posts.
Posted 8/24/2012 12:49 PM (GMT 0)
Hey Dee! I am also 36, four kids 18,15,11, and our soon to be adopted 4 yr old. I used to be and on the go, in the gym etc person, started slowing down Dec. DX with fibro in March. Savella has been amazing for me so far along with tramadol and cyclobenzaprene when needed.

I have good and bad days, more good with meds and bad isn't as bad as without meds. I too feel like a bad mom some was, my oldest has had to get kids too and from school for me cause I can't trust how my day is going to go since fibro is unpredictable!

Lucky for me I found a great Dr and hubby to be attends appointments and has read up on fibro so he understands as much as he can without having it. He gets a little overprotective sometimes :-) lololol can't limp cause my foots asleep cause lololol then he won't let me do for myself :-)
But going to appointments and reading this forum and articles as been what has made him so understanding!

Hope you feel better! There is always someone here to talk to,vent to, laugh with when we have our silly fibro moments, or answer questions so glad you joined us!
Posted 8/24/2012 3:48 PM (GMT 0)
Hi, Dee, and welcome!  I'm glad you are trying an antidepressant.  It sure sounds like you need one.  Have you had your vitamin D levels checked?  If you aren't getting outside, you most likely are quite deficient in vitamin D and that can cause more pain.  Also, malic acid/magnesium supplements have helped many here...including me.  It's worth looking into.  I use vitamin D3, the malic acid/magnesium supplements, ibuprofen with food, extra strength Tylenol, and an alternative product that has won awards for pain relief called Curamin.  The only prescription I use for fibro is a muscle relaxer called Robaxin and it has really helped me significantly. 

 

You do need to keep moving with fibro.  If you sit or lay, you will be stiff as a board and have more pain.  I know you don't want to hear this but it's true.  When we are in this much pain, it's normal for us to want to stay in bed and not move but that just makes things worse with fibro.  Really!  I hope other members will chime in here and back this up because others have discovered this too.

 

There are some gentle stretching exercises on Fibro 101 that you can do when you are sitting down.  That's a start.  Then get up and go for a walk.  YIKES!  I do know what you are thinking because I thought that too.  When I started walking daily, I only could go four houses down and had to turn around and head back home but I didn't give up.  I went out the next day and could go a little further.  I kept this up and now I walk at least a mile every morning.  I definitely don't feel like walking but I make myself because I know I will end up enjoying the scenery and have more energy and less pain when I get back home.  I love seeing the critters scurrying around looking for breakfast, the dew on the flowers and grass.  These are blessings to me and this makes me happy.  I am a positive thinker so doing this helps keep me away from depression.  It's typical for people with fibro to have depression though. 

 

I mentioned Fibro 101 in the last paragraph.  Please read it.  It's the first thread on the forum.  There are links about fibro and you will learn a lot there and get help there, too.  There are links about some of the supplements I mentioned and how they work in  your body.  Also, the gentle stretching exercises are here and there is a wonderful link about maintaining a positive attitude, too.

 

I wear loose shifts around the house and when I go out, I have loose tops and capris or slacks with elastic waistbands.  Regular waistbands kill me.  My clothes are of the softest fabric I can find but you can find stylish things like this.  Bras?  HATE THEM!  It's the last thing to go on before I leave the house and the first thing I take off as soon as I get home.  So, again, you are not alone.

 

When it comes to friends, they really don't want to hear about this.  Besides, they can't understand it either.  Try making a lunch date and talk about everything but health.  It really will be good for you.  If you dwell on how you are feeling all of the time, that will only pull you further down into depression and chase away friends and even family.  You are the one that has to learn how to deal with this illness.  It's nice if your immediate family has some understanding and helps you some.  They should!  That's what families do.  But there aren't that many friends that will stick around if you are always talking about how you feel and how much pain you are in.  But you can come here and vent and that will help you.  We DO understand. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Posted 8/24/2012 6:04 PM (GMT 0)
Hi Dee,

I just read your post and decided it was time for me to finally join a forum today after reading your post. You have just helped and encouraged me in doing so and knowing I am not alone in my feeling as you so I want to thank you. I have been dealing with Fibro, disc degenera, osteopenia, osteoporisis, arthritis and just new thing they found other day sacralcitis for 4 years now and each day waking in pain.

Im 46 and a single mom with an 11 year old. Father been out of pic since son 6 months old and just not dated as had own business, then went to Nursing school, son dx. with mood disorder then all this started. So...no dating for me and would not want to drag anyone into this. Not one to ask for help.
For the past couple of days and many other days in past 4 years he is the only thing that keeps me going on and to put that one foot in front of other as I get so tired of the pain.

I don't know, like today, know how people deal with pain on daily basis. Been in a really deep and dark place for couple of days and struggling to get out. I get up early before son goes to school so he does not see me in tears but he knows as some days I am bedridden and I can't easily hide that. I as well started using a cane in Sept. as hard to walk. I don't like it to say the least and I know that affects him as well.

It's hard and I have lost all but 1 friend as well but, only call her or see her when I feel I can be in an upbeat mood and hide how I feel. Yes, it is so hard for people to understand, for doctors to understand, for anyone almost if they are not going through it. My family tries but gets frustrated. I wish sometimes there was a way that pain can be seen. I have imagined that in trying to explain or for people to understand, that a person, doctor or whom ever, that they can touch and see and feel so they understand and don't think your crazy.

I see an internist, who does not understand. I see Pain Management who helps tremendously with pain and because they seem to actually hear me. The one I have seen for past few years has just retired so went to new one 1st time last month. I am hoping they are as caring as last. First one's sent me to psychiatrist for depression. A Rheumatologist who has dismissed me as she said there was nothing more she can do for me and recently an eye neuro. as my eyes have something going on due to muscles and whatever else going on with body. Water therapy but, that ended up hurting more than helping after a couple of months which they saw so they stopped.

I am trying meditation as I cannot do yoga. Somedays it helps, others, I can't find my my safe place and have hard time just breathing. Used to be very active and loved doing outside adventures with son and now can't do anything I used to that requires me to be physcical. I hurt for my son, that he has a mom who can't do anything. If I have good day I try but, expect to be bedridden or homebound for 3 days. ( I have grown to know limitations, not always acurate though.

Anyway....I can go on and on but have to stop. I hate being on pity pot and that is where I am too. My son gets home in a couple of hours and have to try to "be together' or at least try and act like it.

I hope things have improved for you since first post and thank you and thank you again.
Posted 8/24/2012 7:30 PM (GMT 0)
Imagine,
You need to find a Dr that understands fibro, they are out here. And also check fibro 101, we all here understand having fibro with kids, not being able to do what we used to, and feeling like our kids need more of us :-)

So glad you found a story that was helpful to and helped you join! There is always someone who is here to listen when you need it :-)
Posted 8/24/2012 8:15 PM (GMT 0)
@Imagine free I am glad my crazy post helped u. U sound exactly like me though and we r going through the same thing. Yesterday was a bad day. Today is a better one. Everyday is different. But not with my pain. Everyday is the same in that aspect. When u r feeling down or feeling great. Or just want to talk email me. [email protected].
@Sherrine. Unfortunately I am not really mobile. Not by choice and not because of lack of trying. And u definitely could have left out the comment that sounds like I really need an antidepressant . I thought the point of the forum was to express yourself on good or bad days and yesterday was a bad day. Didn't need the judgement. I also do get out of the house and try everyday to stay motivated. But sometimes I do have a bad day. Glad u can walk. But I can barely make it down my driveway and can't do it without a walker. And please don't think I haven't done everything in my power to try and over come this. I have. I have a severe case of fibro. And if I push to hard I am hospital bound. So that is not an option for me. I am sure u didn't intend for ur post to sound the way it did. But just understand I thank everyone for their kind words and it really helped me get through my bad day yesterday and I am glad my depressing post was actually helpful to others. I definitely understand where everyone is coming from. Thank u
Posted 8/24/2012 9:48 PM (GMT 0)
Dee, I'm sorry you took my post the wrong way. I was just trying to help you. If you are having such severe problems, then you might want to get a second opinion. Fibro doesn't usually cause that type of pain.

This happened to me last winter. I could barely lift my feet off the ground to take a strp. I had raw nerve pain shooting down both legs and just trying to get my legs into bed was unbelievably difficult.to the point I would see stars. I couldn't walk down my driveway...just getting to the bathroom was nearly impossible. My steps were in inches, not strides. I've had fibro for over 25 years and its not a progressive illness so I bit the bullet, found a great board certified rheumatologist, and made an appointment.

He and his staff spent three hours with me. After an exam, twenty five x-rays of my entire spine and neck, eight vials of blood work, and two MRI's, I was diagnosed with ankylosing spondylitis...an inflammation of the spine and a rheumatic disease...along with fibromyalgia. I was put one medication and am now back to walking again. You could have something like this going on. It's worth to be checked out again. At least that's what I did.

I went back and read your posts. You said you asked your doctor for an antidepressant and you started on them last week. You obviously thought you need them and I was just agreeing with what you said. My husband suffered from depression for years and antidepressants helped him a lot. There are many on here that need antidepressants because of this illness, too. You are not alone there. I was not implying that you crazy. Living with chronic pain IS depressing.

Again, I am sorry for the misunderstanding. I am not the type of person that is here to only sympathize with members. I'm here to try to give concrete ideas to really help our members. I was a teacher at one time and it definitely comes out in my posts. This is what I was trying to do. I was not judging you just like I hope you were not judging me in your post to me. And of course you can come here to vent! But this was your first posting here and I was just going by what you were saying. The things I wrote to you are typical of what I write to newbies. I hope you understand.

Sherrine
Posted 8/24/2012 10:23 PM (GMT 0)
Yes Sherrine I understand and I know u didn't mean anything by that statement. And yes everybodies history and present definitely does help. And yes chronic pain is very depressing. But what mainly affected me is getting the news I couldn't work and not being mobile. It's a huge life change. Huge adjustment. I have been tested for everything under the sun. I have had almost 100 blood test. Spinal taps. Been to every specialist and had numerous 2nd opinions. I have even traveled to NY for specialist. I live in SC. And they all come up with the same thing it's fibro. I am going to 1 more MS specialist for another opinion . This pain I have is so dibilating . When this all first started I was in denial. I went back to work and pushed myself. And I paid for it. Admitted in the hospital for 1 week for extreme pain. Took them a week to get it under control. After I go to the supermarket I have to come home and nap. It takes everything out of me. My doctor says its an extreme case of fibro. And on other sites there are woman who have swelling like me. Also certain smells and noises get to fibro people to. I thought I was going crazy until I went on other fibro sites
But yes a small part of me doesn't believe this is only fibro. I think there is something else going on. But I am done getting tortured. Thanks for ur post. And I am sorry for the misunderstanding
Posted 8/25/2012 1:30 AM (GMT 0)
I am so sorry dee for what what you are going through, i have no words to say how sad i am for you!!!
One thing i did wonder about though is maybe you also have chronic fatigue, that could explain all the exstream syptoms you are having, and it does not show up on any blood tests... In fact some Docs i have read think they are close or if not the same syndrome..I know some people with chronic fatigue who cant walk and are bed riden for months..
Also another person (sherrine you might remember better than me) posted about lyme being a culperate of some of the unexplained syptoms.. U can have fibro which i have no doubt you have, and these other very hard to diagnose sydromes...
I hope you can find at least some solace here. There is nothing but love and help here ;)
cheers
Azumi
Posted 8/25/2012 6:15 AM (GMT 0)
Dee, you mentioned smells and noise. At times, noise can be so overwhelming to me and to my husband. My husband has become home bound due to reactions to everything. Smells can send him shuffling for the bathroom and or give him muscle spasms that make him have to take meds and go to bed.

Tonight we were doing services at home (Friday night Shabbot) Usually we use the computer as the bible or just rely on what is on screen. Tonight my husband got out the bible and was reading it for himself and started having reactions from the paper. (most paper is made from corn and then the chemicals in the ink cause reactions.)

I know it is hard when you are feeling so badly to still research, but try to journal and see if you find a pattern to your episodes and reactions.

We have to have a very careful food diet of whole foods.

When I go shopping, I get most of the groceries put away...........forget me cooking for a couple of days. I will spend the next day or two in bed to recover. Rainstorms that are 2 days out from our town will cause me severe pain, but when the rain actually starts here, I get relief. Weird I know, but I am starting to accept that 'weird' is my new normal. LOL Mr PCP laughs at me when we discuss symptoms and possibly trying something. He shakes his head and says he isn't sure what to do with me because I am always that '1' that reacts in a negative way. (He totally gets me and tries to work with me doing natural things to keep the reactions down....... even though he laughs with me, I know he cares and is really trying to figure this out for me.)

I hope you are having a better evening and have a great weekend.
Posted 8/25/2012 2:15 PM (GMT 0)
Thanks for the kind words. Yes I finally slept for 12 hours. @Azumi I have been checked for Lyme several times with blood tests. Then i read that Lyme doesn't always show in a blood test, So then I agreed to a spinal tap and it showed up negative. I moved to SC 5 years ago originally from Long island NY where Lyme is very common. I also had a house on the water so I was convinced it was Lyme considering where I lived. But all negative results. I have been tested for almost everything u can think of. But any other ideas keep them coming there is 1 disease that I caught partial of on the discovery channel. It's a blood disease and the initials for it are HAD. But I can't find it anywhere on line. Still researching. I officially have my PHD in google. I call myself a google doctor. Lol that's where I research everything. My doctor laughs at me. I come up with new ideas all the time and all that match my symptoms all from the Internet. I have also cut out every bad food out of my diet. Have had allergy testing. All normal. I have done every cleance u can think of too. I thought this was yeast too. But that was a negative to. Keep the ideas coming I am open to hear everything. Thanks everyone
Posted 8/25/2012 4:29 PM (GMT 0)
Have you looked up the medication  you are taking and see if any of them can cause muscle pain and other symptoms you are having?  See if they interact with one another?  Your pharmacist could help you with that. 

 

Also, do you take any cholesterol medication...statins?  They can cause more pain.  I do take them but take CoQ10 to counteract that.  Statin drugs can deplete your body of CoQ10 and cause bad muscle pain.

 

Sherrine

Posted 8/26/2012 1:58 AM (GMT 0)
For my husband we found that salicylates in foods cause a huge problem. THere really is no testing for that other than detective work. He is also allergic to con and numerous other foods, but he tested with a minimum reaction to the pinprick testing and blood wrok. He has horrible gut and muscular reactions though.

It can be so frustrating trying to navigate and figure this all out.
Posted 8/27/2012 6:19 PM (GMT 0)
Hi Dee, Thank you again:) Hi Dustinshunny, thankyou for your post as well. I have learned alot from this forum and many members post. It is wonderful to know I am not alone in any aspect and that there is so much to learn from this forum. I have not been online for a few days as just not doing physically or emotionally well. Could not walk yesterday without excruciating pain and had to put on happy face for my son when he came back from a day with a friend. Hard to do but pulled it off somehow.

Dee, I hope you are feeling as best as you can today. As I hope that for all.
My son has Back to school Night tonight and somehow I have got to go for my son. This past week or longer I would not have been able to by far. I covered myself in patches yesterday, heating pad and fell asleep with patches on and think I will be able to attend. May look really bad but, I am not going to worry about that...or at least try not to. :)

Yes Dustinshunny....time for a new internist. It hurts and is very hard when they don't understand. After test after test and bloodwork coming back fine as well as other test....I've been told once I could think positive and will it away. My jaw and heart dropped. Maybe they are frustrated with not knowing what to do with me as everyone else is. ???? So, searching for new internist. Will take your advise happily and go from there. Tired though of going to Dr. after Dr. after Dr. I have made a typed out list of all symptoms and DX and just take it to them and half of them don't read it. They need to because Fibro Fog is real and I forget many things on that list if I'm in pain and hard to focus on anything but that pain. Finding you really do have to take charge and study online as mentioned to find out just maybe, there is something that will help ease all this.

Wishing all the best......imaginefree
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