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Jesseswife27 posted:
Hi- I'm new here, I have been trying to do this " life with fibromyalgia " thing with little support. I saw this place and thot I could see other people living with fibro and being happy. It's been 2 years with fibro and I have been on so many medications it's seem like I'll just be in pain forever. I know I will have pain, but I want less pain. I have been on cymbalta, lyrica, gabapentin, amatryptaline, Zoloft. Currently on 100mg of Zoloft, 1200mg of gabapentin, and 50mg of amatryptaline. And I hurt just as much as before. Changing my diet hasn't seemed to help, went to part time at work so I can get enough sleep, I'm moderately active but it kills me. I have been to a counselor to help with stress. Is there anything else I can do? What has worked for you? Thanks
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DakotaWilsonFM responded:
Welcome Jesseswife27... Here you will find the support you are looking for and a family to boot... I came here feeling the same way you do... Infact I wake up everyday knowing I will always feel pain but just wanting a level I can tolerate... Strangely and oddly enough when they added my morphine and OxyCodone I felt a much less level of pain... Even tho opiates aren't suppose to help FM it helps mine... my 8 to 10 daily pain... is now down to a tolerable 3 to 5... yet I take one med for FM... it isn't any you listed and is Tramadol... another pain killer style med...

I do have multiple problems and so the dr's say that my brain where the pain meds register may be in over time mode lol.. to keep up with it all... lol... I am so foggy most of the time with FM fog and forgetfulness that I think my brain is running in reverse not in over time lol....

It is hard on FM when you just have sleep patterns and stress to worry about but if you start dealing with multiple problems then they also trigger flares... and then we go from talking about meds to acceptance... I have been sick for 30 years... and it was hard to find the acceptance in my heart to actually gather the strength needed to go on and do more then to fight against the dr's and not with the dr's... some people like my children say that is what kept me going as long as I could go... they handed me crutches and I tossed them back... and they brought in the wheelchair and I threw it across the room... I wasn't stubborn... I was fiesty... I could walk in braces with no crutches... and didn't need a wheelchair except to hold my children on the arms when they couldn't sit in my lap... and go to te picnic in the park... so I took it finally... But I didn't do anything to slow me down... I am still 30 yrs later in and out of the wheelchair and mostly walk... Even tho it hurts...

I had to accept that the illness didn't make me and sure didn't have the power to break me... unless I gave it such power... Even today my illnesses can knock me back a few paces and slow me down and I have to have special care for a while... but unless it is a nasty bacteria that found it's way back into my system... I fight it all quite easy... the rest I need special meds and rest for... and I get it now...

I have to accept myself daily... I am no loser... I am ill... I am no quitter... I fight every day... I am not perfect... I am human... so if I fail to remember to accept myself everyday and get depressed a few days... I am normal...

We go thru alot when we are ill all the time... and here we can share it with people who are just like us or can relate to us... I hope you keep coming back...

soft hugs... love... Jan/Dakota
 
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Jesseswife27 replied to DakotaWilsonFM's response:
I have tried tramadol, it didn't help. I also have sever depression. I try my best to work with my doctor, he's a really good doc but he's our family doc. I try to tell him what seems to work and he suggests other things. I have tried physical therapy, acupuncture, medication approved for fibromyalgia. It just seems like I'm going no where. I'm just tired of being in so much pain. I know it wont go away but if i could be at a 4 or so and not the 10 Im in all the time. What I think sucks the most is my partner tries to understand but it's not something I can explain to her. And she hates the fact that she can't do anything to " make me better". I wish I could get a good nights sleep, I wish I could walk more than just around the house and not feel like I'm falling apart. That I could concentrate. That I can hold my head up with out my neck feeling like its going to break. Oh the dreams I have. Lol I take norco when the pain is bad and it does help a bit. I just hate being " the sick one" my kids are sad that I can't swim with them,or run around the park it sucks!!
 
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thenikki64 responded:
Hi, Sorry you are going through all of this, but unfortunately for most of us it is trial and error to find what meds work and what don't. I cannot tolerate any of the 'usual' meds: Lyrica, Cymbalta, gabapentin. I do see a pain management doctor and I take a LOT of supplements. My pain doc has been the best for me. I take an opiate 3-4 times daily and I also receive botox injections into trigger points. The last botox round didn't seem to do much, so I am going to try it one more time, and if that doesn't work, then no more. The doctor did tell me that botox might stop working at some point. Not sure where I'll go after that.

Supplements, well, you can find all you want to know on this board. Mine include a multivitamin, additional Vit C, D; B12; folate; manganese; magnesium; selenium; calcium; CoEnzyme Q10; Sam-e (careful with that one, ask your doc); iron.

I also have osteoporosis (I take Prolia injections for that) and was recently diagnosed with rheumatoid arthritis. I hope that getting the RA under control will improve my pain level even more.

Activity is good, but some of us overdo, and can make our pain worse. I swim, walk, but there are days when I push myself and sometimes I pay for it, sometimes not. I work nearly full time.

Perhaps a pain management doctor (a good one, not a prescription writer) could help. Some folks use neurologists and rheumatologists, too. Keep looking, keep trying, you never know what might help. Hang in there!
Pam in Savannah
 
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booch007 responded:
Good morning Jesseswife. Welcome. Good find being here with the Fmily. A tune up is order for you!

To the left under resources is the toolbox, take a look in there. I wrote that post years ago as I wanted a place for people to go and hear real fast what tricks we do.

Now you know the saying Rome wasn't built in a day.....well FM doesn't get better in a short time. It is as I just said in the daily post....about 18 years I have tweaked and tried different things. I am the most tuned right now.

Big changes were for me. A green diet (full of antioxidants) I ate only green vegetables along with meat, chicken , fish and drank water only.....I can't tell you how much sweet n low I had in me, and aspartame in soda and crystal light. I paid alot of money to get that one hint to change me.

Dang if it didn't....I could never stretch the muscles before that and it took two months of consistant to do it...but when I did change...man I was committed to stay with it.

I also found my Vit D was low and started that. Magnesium was spoken about by Dr Oz and I was on 250mg but he said eveyone should be on 250mg. SO I THEN SAID...man I am in trouble so I will take it twice a day. BIG help and another change for me.

See it is reading, looking and trying....and not looking for anything fast. The physiatrist told me, it takes 60 days to change your body chemistry, so be patient.....and that is why I just tweak and wait a while..

Pain is always with us, just toned down to have a life.

I use the book FM and Chronic Myofascial Pain, a suvival manual by; Dr Devin Starlanyl as a guide for the areas at risk. I have many books as resources to work a zone and now at this point strengthen what i can.

I also use trigger point injections as a therapy for myself, not for the weak of heart...but good for me. SO effective and a massage now and then. (efflurage...wide sweeping movements to the muscles to move fluids in them)

I know with perseverence you can get there, be better and rise above the rim of the cup you are in. I was so close to killling myself.......as a nurse I am in a place of knowledge and an edge above others and I couldn't figure me out. NO TOOLS. Then I GOT MAD not SAD...and started to write down what hurt me, what helped me and what my limits were.

I now look at everything as an exercise...Posture, body mechanics, using different muscles to do things. Changed just about eveything in my world. BUT I have begun to dance with dragon rather then "draggin him" around with me, or fighting him!

Stay, read all you can and start a plan. try mine....it wasn't easy to start that green thing and water only..a real detox from having sweet in your life...but I am so better for it.

Good luck on your path, we are all different with different things just a bit off, so that makes it so hard for the docs.

I couldn't take gabapentin (too sleepy even at 100mg a night), elavil didn't work....Cymbalta near killed me...and I saw 9 doctors to get a final diagnosis!

So my mix is..Soma (muscle relaxant) started at night then now 3 times a day, Savella 12.5mg (my bow on the box) Tramadol 37.5 with tylenol and supplements of Vit D, B Complex, Magnesium a little calcium and CoQ10 for the muscles. I take avapro for pressure as well.

So that is my world. I use distraction as a med and laughter too....(they are free) it is sometimes stronger then the pills for helping me. I am able to work full time, but I need to watch the muscle groups and switch off...and I change shoes to a different pair each day to shift the muscles of the legs being worked.

See how I plan each thing......I wish you all the luck in the world to tune up and get to a better place, it is possible.

From deaths door I was to the best tune I have had in this process...it can happen. (I needed to stretch my fingers and to my toes in the morning just to get out of bed...)
Mornings are still my tough time. But I get younger as the morning progresses. . ((hugs to you)) Nancy B


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