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Old 08-25-2006, 11:01 PM   #1
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aleenia HB User
Question oh god, the pain...

this is getting worse for me - i'm now getting more pain in my hips and buttocks. my back is still killing me, and these pains are with me all day. the only time i get away from it is at night (does anyone else experience relief at night?).

my question is: is there ANY medication that helps? so far i've taken NSAIDS, flexeril, normal over the counter extra-strength pain killers and the last thing i've been prescribed is valium! nothing works...

if anyone has any advise about pain managment, i would be so grateful.

tonight i broke down in tears in front of my husband, who stormed off to the bathroom, shouting that he couldn't cope with this anymore. i don't talk much about my pain to him, and i've not cried in front of him before. it seems to now be affecting my marriage.

:|

 
Old 08-25-2006, 11:29 PM   #2
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Re: oh god, the pain...

Finally got serious with my doctor about pain and he put me on oxycontin 10 to 20mg. three times daily and tylox for breakthru pain. I have used this combo for 10 years. It doesn't get rid of all the pain, but it does take the edge off.

I am happy to tell you that after 21 years of F/M I am now cured. I feel God touched me through a site called fibrofix.com . I followed the instructions and now I do not have a single F/M symptom. It took a little over a month. This site does not sell anything, it suggests a protocol and amazingly enough it worked for me.

 
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Old 08-25-2006, 11:33 PM   #3
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Re: oh god, the pain...

I'm newly diagnosed, so I'll just tell you what my doctor told me. I can't tell you what, if any work, but I can at least give you his advice.
He told me:
hot showers with spray concentrated on the sore spots
excersize (hard to do I know)
eating healthy
over the counter pain meds
hot packs (those magic bag type)

I'm sure that's not much, I can't take most pain meds as I am also having probs with my liver, but at least my pain's not horrible right now (I have it in the same place as you right now).

I hope someone here has more helpful advice. And I know about the excersize. I can barely get out of a chair some hours, but you want me to excersize?? But according to a lot of sources, it actually does help.

Good Luck
Christine

 
Old 08-26-2006, 07:13 AM   #4
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lala-whatsnext HB User
Re: oh god, the pain...

don't forget light exercise to keep muscles loosened. Too many people sit and wallow in the pain. Movement in our friend. But remember to start slowly and work your way up or you will be defeating the purpose.
As for your hubby this is not abnormal for family members to not understand. Please try to be as patient with him as you would want him to be with you. Suffering alone might be hard but losing him completely might be worse. Go to the hot shower for a good cry when needed, you will kill two birds with one stone, losening the muscles with the hot water and relieving your pent up self pity. When I do it I call it my pity party.
I know its hard but those with fibro must remember it could be worse. We don't have cancer or AIDS, our hearts are not failing, no brain tumors. See? It could be worse.
I tried the narcotic route and it only works for a few months then you have to go up in strength because the body gets used to the dose of meds. Its a circle I didn't care for , every few months going up in strength. Then the narcotics has the side effects that eventually caused permanent damage which I won't go into. Its impossible for me to take them any longer now because of this.
Everyone had to figure out what works best for them. Try to remember it could be worse.
Good luck

 
Old 08-26-2006, 10:03 AM   #5
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Re: oh god, the pain...

Bikerider,

I'm curious what part of the fibrofix protocol you found helpful. A low-acid diet? The Guai? Or the camphor?

Are you still using the narcotics, or "totally cured" w/fibrofix, and for how long?

Thanks for your reply.

 
Old 08-26-2006, 07:39 PM   #6
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Re: oh god, the pain...

thanks for the responses here.

i have been trying to get out and walk around a bit - it kind of helps, but the pain doesn't go.

i was woken up last night with the most awful pains in my hips - stabbing pains - and they haven't left me all day. i now stink of icy/hot! it kind of helps, but i can still feel the deep burning stab in my hips. do other people get this kind of pain with fibromyalgia?

also, regarding the hubby, yes... i do believe in not stressing him out, but i dearly wish i could get a hug. i am so far away from my family (they live in england and i live in the states), and i just rarely a hug. i'm in my 30s and i still want my mum! lol. seriously, i would love it if i had my family around me right now - i could use the support as i feel terribly lonely. i'm scared of upsetting my husband, but i'm sat here in the most terrible pain, trying to pretend nothing is happening.

i just don't feel like i am a normal human being right now - i feel like someone's slowed everything down and i cannot see tomorrow.

sorry to sound so miserable.

 
Old 08-26-2006, 08:14 PM   #7
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Re: oh god, the pain...

I still have a bone spur on my spine which causes really bad pain.(which is inoperable.) My narcotic use has dropped to better than half. I followed the protocol just as she outlined, using the antiacids, the sudafed and guaifensen. Large dosages of guaifensen really helps.

I have not had a fm symptom since July 2. Have had more energy and am doing much more than before. I am riding a bike at least five miles a day. The key to fm maintenance is to keep exercising.

I would not wish fm upon anyone, it is the worst feeling (on flareups)a person can have and still be alive. I thank God for His hand in my recovery.

 
Old 08-26-2006, 08:39 PM   #8
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Re: oh god, the pain...

that's great that you are feeling better, bikerider. it must be such a relief!

i'm trying to look up some natural remedies for FM and i came across something about apple cider. has anyone else heard of this? i managed to lose the page i was looking at, and so i don't know the dose i am supposed to take. i bought the cider today and would like to start on it a.s.a.p.

if anyone can give me some info on how much to take, and how to take it (i.e. in water?), that'd be great.

 
Old 08-28-2006, 03:42 PM   #9
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Re: oh god, the pain...

an update on my situation. i was referred to a physical therapist (who i saw today), and she thinks i have FM, or some kind of rhumie thing, so she's referred me on to see a rheumatologist. she poked and prodded around my body, and said that i have the classic pain points that show up with FM.

i felt a bit like a hypochondriac though for some reason, but she was very nice about it.

i guess i'm going to get one step closer to finding out what exactly this is.

 
Old 08-30-2006, 01:16 PM   #10
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Smile Re: oh god, the pain...

Hi! I'm a brand new member and this is my first post! My heart went out to you, as I am in similar pain. But, hang on to your husband with all of your heart! I lost mine four years ago, and it still hurts. He was disabled for 9 years before he passed away, but, believe me, he was my miracle. I was there for him every moment, but I don't have him, and it is so hard. We didn't have children -- just cats (3). You would not believe the peace and love they give me; they keep me going. But I just (August 1) lost my job because of newly diagnosed OA in my hands (and other parts) but I couldn't do the production typing they hired me for one year ago. The Fibromyalgia is also beating me down -- IBS, depression, pain all over, migraines (they are getting better) -- and last, but not least, the lumbar disc disease with bone spurs and radiculopathy is all about to put me 6 feet under!! But somehow I keep going. I have an excellent rheumatologist who referred me to an even better pain management doctor. The only thing I worry about is that I am on Kadian (morphine) and Lortab, but the morphine doesn't seem to do anything. At least the Lortab takes my mind off the pain for a bit. I believe, might be wrong, that nothing really touches nerve pain. Am I wrong?

Anyway. just wanted to say treasure your husband for as long as you have him, because you never know what is around the corner! And, God bless you and I pray that He relieves your incredible pain. Same to all in our "family"!

Until we meet again,
__________________
Always praying for you and your needs,
Carol

 
Old 08-31-2006, 09:07 PM   #11
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Re: oh god, the pain...

i'm sorry for your loss, cjrprice. i can't imagine what you must've been through.

be assured that i am holding onto my husband very tightly - he is absolutely wonderful and i would not swap him for the world. i came a long way for this man - halfway around the world. i hope i didn't come across as though i don't value him - i do, but he's like a lot of men in the way that they find it hard to relate. that's not a major problem. he gives in lots of other ways.

best wishes, and welcome to the board

 
Old 08-31-2006, 09:33 PM   #12
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Re: oh god, the pain...

I'm very sorry to hear about you and your husband. Fibro is a difficult disease that alot of people dont understand and tend to think that it is a "made-up" condition. While I do not suffer from it my girlfriend does (we have lived to gether now for 5+months and have know very well for over year and a half)..It takes alot of understanding and patience to try to help her with her pain. It is difficult when she has to break plans or even has trouble with her daily activites.What she does for her pain at night is the heating pad (and/or hot and cold packs) along with elevating her feet. She also uses a "heated" massager that seems to help her as well....I've read a ton of books and researched a bunch of sites and it is really important that your husband needs to understand what you are going through as a strong support team seems to also be a key in recovery. Hope this helped a little

 
Old 09-01-2006, 05:29 AM   #13
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Hope4All HB UserHope4All HB User
Re: oh god, the pain...

Hi aleenia

You have the SAME problem I do. Hips hurt like crazy, wake up early due to pain and this lasts all day even though it does hurt less as day goes on. I also have the burning above the buttocks and into my lower back. I have a spot right now on the out side of my leg that hurts like crap! Feels like I whacked it off furniture or something, but I didn't...No bruise or bump.

I called my regular dr and he told me to see a Rheumy. I have my first ever Rheumy appt October 17!!!! I hear for your first visit it can take anywhere from 3-6months to get seen. I guess I got lucky (if that is lucky) LOL.

With my family I tend to lie ALOT, if they ask how Im feeling, I normally say fine. Only time I will let them know is if I'm having alot of pain. I had a grandmother who by the way lived til she was 95, that everytime you said how you doing she NEVER said fine, she ALWAYS had something wrong. After awhile you don't want to ask. So I don't want to be seen like her. If its bad enough I will tell you, if not I will keep my mouth shut and go about my day This CAN be a double edge sword though, if they NEVER hear you complain and finally you do, they say well it cant be that bad I NEVER heard you complain about it BEFORE!!!! LOL

Hope

 
Old 09-01-2006, 03:25 PM   #14
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Re: oh god, the pain...

that's what i did for a while too, until i was with my mother-in-law and she asked how i was. because it was woman to woman, and i knew she'd understand, i told her how i was actually feeling. my husband said 'that's the first i've heard of it!' lol.

for a while after that, when the pain was really bad, i'd tell him how i was feeling. now i don't, because i'd be telling him every minute of the day and that's not much fun for him or the rest of the family.

the strange thing is (and i'm still wondering whether the hormone thing is a link), i'm feeling a little better. no real back pain and none of the other symptoms really. a few twinges in my hips and maybe a little ache in my neck and back, but that's about it. i do have some fatigue still, but i've always been like that.

reading up about FM, the sleep thing seems to be a BIG issue. we don't have thick curtains up at our window and i'm woken up early in the morning. i think that getting some good window treatments and a new bed (taking advantage of labor day sales!) is on the agenda.

keep me posted about your rhuemy appointment - i'd be really interested to hear what they say. i'm still waiting for my appointment.

 
Old 09-01-2006, 07:57 PM   #15
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Re: oh god, the pain...

When is your Rheumy appt? Or are you still trying to get one?

If I take my anxiety med Xanax XR I sleep well (actually sleep in )and I still have pain but the other off balance flu like feeling isn't there. I do have VERY poor sleep if I don't take it. I wake up feeling like I was out partying all night, with a hangover and while I was partying I was run over by a truck! LOL

I'll let you know how the appt is, just that its in October and I hope I can remember lol Love fibro fog!

Hope

 
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