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Old 05-17-2006, 03:22 PM   #1
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ajtesto3 HB User
i need help with pain management

hello-
my name is amy, im a mother of 3, sara is 8, jonathan is 4 and jacob is 4 months old. i was recently a month after my son was born diagnosed with fibro. i never dreamed i would have something like this. its real bad lately. i cant barely get out of bed, my knees hurt soooo bad, ive tried different kinds of pain meds, but nothing seems to help. i wake up and my arms and elbows hurt real bad also. its getting so bad its getting hard to take care of my baby.
i have to push myself to get up. i was just wanting to know if anyone has anything they can share with me, maybe something thats helped them. i cant live like this forever. im claiming that god has healed me, but thats in his time.
i went from being an active mom to a mom who can barely clean up her own house, it just drives me insane knowing theres nothing i can do about it.
any help would be greatly appreciated!!!
god bless- amy

 
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Old 05-17-2006, 07:36 PM   #2
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Emmabean HB User
Re: i need help with pain management

I'm sorry you're hurting. I just want you to know that I have a 6 mo. old, and my fibro has gotten much worse since her birth. It's hard. I have to push myself every day to take good care of her. I'm struggling terribly with the degree of pain I feel. My knees are terrible too, and my back pain is almost unbearable with pain shooting into my head. She's now 16 lbs. I used to be bubbly and energetic, and now I have to try to be that way by setting my mind on positive thoughts.
I wish I could offer advice, but currently nothing is working for me. Just know that you are not alone, and we will succeed as good mothers! There must be a light at the end of the tunnel. I pray and ask what i need to be doing in my part of the healing process. Sometimes I do slip up by drinking caffeine. Try to have a healthy diet.
I also have invited my parents to come for a weekend to give me a little rest while they babysit. It's not for 2 more weeks, but I can't wait! I feel so sleep deprived, and I think that's a big part of the problem. You need to get restful sleep!
I'm glad to know you!

 
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Old 05-18-2006, 09:03 AM   #3
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Re: i need help with pain management

I am a single mother of twin babies who was diagnosed with fibro last year. I think I've had fibro for a few years now but it was just never diagnosed. It definately has gotten worse in the last year. It takes me 1-2 hours to get myself to be able to move to get out of bed. My babies are 13 months now but when they were little, they were both on apnea monitors and had to be fed every few hours. So I set up shop in our living room, I slept on the couch(which was more comfortable than my bed) and had the bassinets in the living room with me. My doctors will not give me any pain medication, and god knows I need it, instead they started me on a regiment of psych meds last october and I also have ultram and 800 mg Ibrophen. Now I set me alarm really early and as soon as I am awake I take my meds. I have to make sure I set them out at night because my hands hurt so bad in the morning I cant even open up a pill bottle. For me my entire body feels heavy and stiff. I literally feel paralized through my back and legs. I started doing this technique called "turtling". If you have ever saw a turtle on its back you'll understand what I mean. I just have to start moving my body around little bits at a time. If you keep lots of pillows on the bed, so you can use them to wedge yourself up to try and get into a sitting position. Even though I keep alot of pillows on my bed, I only sleep on one pillow. It will help with your back by keepint your spine more aligned. If you can afford them, memory foam pillows work great. Unfortunately I am a single mother of twins who cant work right now so no foam pillows for me for awhile. Some tips for helping out with the baby. Invest in some powdered formula. I used to put the powder in the bottle and keep one in each bedroom. I also kept a gallon of bottled water in each of their rooms and a bottle warmer. This makes it so much easier to have everything close. If your baby is a little older, make sure he/she has plenty of safe toys in the crib to play with in case she/he wakes up before you. And if you have a toddler, keep a little snack near the bed, something they cant choke on and it easily accesable. Cereal bars can be good, sometimes a little messy. Just remember to open the end of the wrapper so the little one can get it in the morning. And even though it makes me feel like an old lady, I invested in a cane. I mostly just use it in the mornings. My knees hurt really bad in the mornings and I have had many times where my legs just give out so I use the cane to catch myself. This disease needs to be recognized better by the public. I dont look sick most of the time but I do hurt very much. Most days I dont even get out of my jammies, I reserve what energy I have to getting my kids breakfast, getting them dressed and organizing a playday for them. I used to be a preschool teacher before all of this came crashing down on me. Most days just seem like they could be so dreadful but my children really do brighten my day. And every now and then, I will have a day where I just feel normal, and on those days I take advantage of every minute and go on walks, make cookies, and just basically go all out. Just dont get down about whats going on with your mind and body. Find yourself something to do relaxing like crafts. You just have to push past all that pain. So don't ever feel like you are alone, many others share your situation. Good luck!

 
Old 05-18-2006, 10:00 AM   #4
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Re: i need help with pain management

Heather, I have a degree in early childhood education and was a first grade teacher for years! I'm like you-- I have to find things to do to make home life interesting. I just started crafts myself. Do you struggle with the fact that you can not have a career and the income that goes with it? Not that teaching pays much, but I used to be able to fit a lot into my day to make extra money. As a single, I've always held two jobs, tutored, etc. Now I'm completely dependent on my husband for income and it's tough on us. I love my baby and being a homemaker, but I wish I could experience more than just lying around in pain. I try to make our days lots of fun, take her out for walks, etc. But it's just so different from the way I used to be. Now I have to force myself to be upbeat and energetic.

I can not imagine having twins! I hope they are good babies for you.

Since my baby is not mobile yet, I have an exersaucer or jumper in every room (some are borrowed). That way I don't have to carry her as much. I also have a stroller for the house to push her around. I still breastfeed and I can't decide whether my fibro would get better or worse if I weaned her. It seems like more work and energy to make bottles, and breastfeeding is supposed to produce positive hormones, but I also feel sooo drained.

That pillow sounds good. I should save up my money for it!

 
Old 05-18-2006, 11:07 AM   #5
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elmhar HB Userelmhar HB User
Re: i need help with pain management

Gals,

I'm glad you are all supporting each other w/practical tips for infant care. Often it's those little practical ideas that help us get through the day.

I sincerely hope you have all had complete thyroid hormone workups recently. The thyroid gland goes through a lot of changes during pregnancy, birth, and post-partum.

The average MD is not up on the relationship between thyroid function & fibromyalgia. However, many fibro specialists have found that optimizing thyroid function reduces Substance P (the pain magnifier) which tends to be elevated in fibro. Reducing substance P means less pain.

Just asking for a thyroid test is not enough. One needs a doc who understands the relationship between fibro & thyroid, one who will test free thyroid (and other) hormone levels, and thyroid antibodies, instead of "just TSH."

John C. Lowe has written extensively on this topic. His book, The Metabolic Treatment of Fibromyalgia, is worth the effort to obtain & read if one has a bit of biochemistry in the ed. background. I was able to obtain this book through public library inter-library loan.

Best wishes to you & your little ones.

 
Old 05-18-2006, 03:32 PM   #6
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ajtesto3 HB User
Re: i need help with pain management

hello gals-
thank you sooo much for caring enough to write me back, thats sooo cool that we all have certain things in common, not that fibro is a good thing to have in common, but the babys. wow- twins, and your single, your an inspiration!!!! i have 3 kids, but my little guy is 4 months old. i do the exact same thing, before i go to bed i make up a bottle with water, i have a formula dispenser i keep in my room plus diapers, etc. today i feel pretty good. ive actually gotten up all day and moved around alot. more days like this and ill be fine. i use to take that ultram, but it did nothing for me. im taking lyrica now, and they seem to help alot more, but cost the same,lol. go figure.
well i just wanted to tell all of you i appreciate you writing me, lets try to keep in touch with updates on our lives. thanks again and god bless- amy

 
Old 05-18-2006, 05:15 PM   #7
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Re: i need help with pain management

Quote:
Originally Posted by ajtesto3
hello gals-
thank you sooo much for caring enough to write me back, thats sooo cool that we all have certain things in common, not that fibro is a good thing to have in common, but the babys. wow- twins, and your single, your an inspiration!!!! i have 3 kids, but my little guy is 4 months old. i do the exact same thing, before i go to bed i make up a bottle with water, i have a formula dispenser i keep in my room plus diapers, etc. today i feel pretty good. ive actually gotten up all day and moved around alot. more days like this and ill be fine. i use to take that ultram, but it did nothing for me. im taking lyrica now, and they seem to help alot more, but cost the same,lol. go figure.
well i just wanted to tell all of you i appreciate you writing me, lets try to keep in touch with updates on our lives. thanks again and god bless- amy

Amy,

This is "granni" speaking, I have 5 children ( and thankfully they are all grown up, not that I have stopped worrying about them), and 8 grandchildren. Believe me I can sympathize with you and the other gals. When I became Ill with this stuff, then called Ebstein Barr Virus, over 20 years ago, I still had my kids at home, an ailing grandfather with Alzheimer and some worries with the children. That, all the stresses is what started it all I am sure.

Like others also have said, I know that it is not easy but try as hard as you can to continue to think positively and TRY and find some things that interest you and make yourself go out and do them if it is at all possible. I do some volunteer work and also love to sing and tap dance. Yes, I still hurt ALOT but it really does help me. Even, if you can only escape to go and take a real hot bath and read a book or something since your children are so young that might be helpful.

If you can possibly get out with someone watching your children to do something ( a movie or lunch ) you enjoy, by yourself or with a friend. I can tell you that my singing and tap dancing once a week have helped my sanity and forget my pain if only for a little while. It is my therapy!!! .

Believe me , I know it is not easy. It only took 20 plus years for someone ( a rheumy) to diagnosis me with FM, and CMP ( I almost diagnosed myself I have been studying it all so long but not that many docs fool with our "creaping crud" or know much about it. I went in with recent labs in hand and history and she agreed. I just made me feel good that I finally had a dx and was not crazy. I am an x RN even though I really did not do much in the hospital after my 3rd daughter was born ( then I had two more after that) then I continued to do home childcare. One thing I have learned is Patience !!

I am so glad that those younger gals on this list are also helping you out with some ideas and I know how much work it is to have chidren, even the best behaved ones !!!!

Please know that we are all with you and do understand. I am thankful that at least this happened when my children were much older but I was caring for little ones at that time too. Please do try and think positively no matter how hard it is. I wake up in alot of pain daily also, even though alot of it is in my head and neck but I have it almost everywhere too.

Feel free to call on me if you want to chat. Try and think positively and do a few things for yourself no matter how hard it is - such as a nice hot bath with the door locked if you can do so !!! When the children are little I know how hard it is to have time for yourself !!! If you can get out once in awhile do so.

I will be gone this weekend, leaving early tomorrow but will be back late on sunday.

Good luck kiddo !!

Lots of blessings,

That granni Marilyn

 
Old 06-01-2006, 11:38 AM   #8
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ajtesto3 HB User
Re: i need help with pain management

hello all fibro sufferers-
well im just writing with an update on my fibro. it isnt getting any better. im still in the same pain i was in when i first wrote on here. it gets harder to get out of bed, go and do things. i havent been taking anything for the pain cause it dont seem like anythings helping me even to take the edge off for a bit. the only thing im taking r vitamins with omega 3 in them. im just dealing with the pain. it hurts, but i just have to deal with it. anyone found anything that helps them, i really would like to know!!!! my knees r sooo bad, and now im getting real bad pains in my wrists, especially when i wake up in morning.
thanks- amy

 
Old 06-01-2006, 01:36 PM   #9
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MOMOFBOYZ HB User
Re: i need help with pain management

Hi ajtesto3
I am 40 but I have two little boys 4 and 6. I UNDERSTAND this is awful. I was so active. I was the ultimate park Mom. Now I survive, we have to take each day as it comes.
Elmar, stated something that you MUST find out. The docs told me my thyroid labs were "normal" 2 docs said that. I paid cash and went to endocrinologist and he said something different! Now, it's not even been a month on the thyroid meds but I can pick up my feet to walk. There is pain still. I know I do have fibro because of the long list of symptoms but I will never get the fibro under control without my thyroid regulated.
Please, to save yourself precious time have it checked out. Even let Elmhar know your labs and she can help you see if there is a slight problem. A slight thyroid problem can cause many of the same symptoms. People go undiagnosed for years.
Sorry about all of this.
I can't help you with the pain part. As I have not yet found the right med.
My prayers are with all of us fibro pts!!! Gob bless, luv.
Deena

 
Old 06-05-2006, 10:36 AM   #10
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rosebuddy HB Userrosebuddy HB Userrosebuddy HB Userrosebuddy HB User
Re: i need help with pain management

I went to a pain management clinic in St. Louis. I had myofascial release with injections and also with massage and physical therapy and percocet, flexeril, neurontin, tramadol. I went through hell and back. Check out a pain management clinic.

 
Old 06-06-2006, 06:30 AM   #11
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Re: i need help with pain management

I really feel for you young mothers. You have to keep going. Have any of you tried Glucosamine? I had pain severe in my neck and the back of my head. Chiropractors, physical therapy and ultrasound treatments were tried but no relieve. My cousin's wife, who worked in a health food store, told me at a family reunion that people with Fibro were taking Glucosamine and getting relief from the pain. So I tried it, and within 3 days my neck pain was gone. I do best with the Glucosamine Sulfate with MSM. Some brands seem to do better than others. I occasionaly do get pains now when I over do, but a little heat, and rest and three pills a day instead of one for a short while seem to keep it in control. I am retired so I can rest and not over do which helps a lot. Hope this helps.

 
Old 06-06-2006, 11:25 AM   #12
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Re: i need help with pain management

Hi Amy,

Sorry to hear you are still suffering & not improving. Multivites are a reasonable start, but for most of us that is not enough. Fish oil can be helpful, but usually a significant amt (1-2 grams of EPA fraction) is needed for pain reduction. I have used EPA concentrate fish oil for many yrs, & find it helpful. However, certain brands flare up my fibro, possibly due to the presence of solvent chemicals used in processing. I am OK with Carlson's & Nordic Naturals brands. They are not cheap, however they are 3rd party lab-certified for purity, and for me that pays off.

Fibro is still a "young" disease in terms of how it is understood & treated. Evidence is accumulating suggesting there are different subtypes of FMS, and that no one treatment is universally successful w/fibro.

Try to find the book, From Fatigued to Fantastic, at your local public library or bookstore. The author is an MD specialist in fibro. The book has great advice on both medical (drug) treatments as well as alternative approaches.

Some people are able to manage fibro w/alt med approaches. Others are not so inclined, or find help only with Rx meds.

It's not uncommon for the first fibro flares to occur after giving birth. It's a time of major hormonal readjustment. A number of different hormonal dysfunctions can contribute to fibro. Most people who actually "improve" w/fibro have to address & treat the underlying hormonal dysfunction. Otherwise, w/severe fibro, you're just looking at ways to kill pain. Which doesn't get to the root of the problem.

From what you said, it sounds like the doc who dxd your fibro mainly offered you pain meds. If those are not working, or if pain meds are not acceptable to you, there are other alternatives. You might benefit from a new doctor. Some of us have found more healing with naturopathic docs than from conventional medicine docs. But even among MDs, there are many diff approaches that are taken. It depends on the doc.

IME, it's common for fibro sufferers to have to try a number of diff meds or treatment modalities in order to find what works for them.

Best wishes.

 
Old 06-08-2006, 10:41 AM   #13
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Smile Re: i need help with pain management

hello all-
well todays been a pretty good day so far. you know yesturday i felt real bad, legs hurt so bad that i could barely walk around my house. i go to church every sunday and wednesday when i can make it, and yesturday i sat around til like 10 minutes til i was suppose to leave and kept telling my hubby, im not going my legs hurt to bad. finally i said alright im getting dressed im going, and i was fine, my legs didnt hurt as bad!!! i went to church and came home and my legs were fine!! ill tell ya god knows our needs!!! im back to taking lyrica again, gives me a little relief from pain. hopefully im not in this pain for ever. ive been reading other peoples messages and that helps alot to knowing theres others out there like me. well thanks to all of you that posted a message for me i really need the support!!!!
god bless all of you!!! amy

 
Old 11-04-2010, 09:12 PM   #14
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Re: i need help with pain management

heather, so sorry- i can feel your pain. i get angry when i hear about Dr's that won't treat your pain. or under treat as the case may be. you have the right to look for a Dr. that will work for you. you do not, in most cases, have to suffer in silence.start interviewing ! keep at it until you find a Dr. that understands fibromyalgia.you are your best advocate. get tough and go after what you want!!!!!!!!
good luck and good health

 
Old 11-08-2010, 01:36 PM   #15
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Re: i need help with pain management

If you visit www.RxOvernight.net they carry medication for fibromyalgia that will give you pain relief.

Good luck and hope this helps

 
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