please help

Discussion in 'Fibromyalgia Main Forum' started by dhamaker, Aug 23, 2011.

  1. dhamaker

    dhamaker New Member

    Hi everyone
    This is my first time posting to any thing like this but...I am at my wits end!! I have had fibro now for about five years and I have yet to find much relieve. Its like I make one step forward and 10 steps backward. Just a little history... I have had 6 sugeries in 5 years and I am sure that is hindering any process to get on top of this. I thought writing my thoughts and feelings may help. The list of things that I have tried would be to lengthy but I can say that there is not a day and exspecially a morning that goes by that I am not in pain. Its been such a guessing game. I get told to excersise in which i would love to do, but my feet hurt to the point where i can hardly even walk to the bathroom, and the thought of exersice becomes to over whelming I am sure alot of u can relate. Most days I just want to sleep so I don;t have to deal with the pain. These are the meds I am currently taking on this go round. Tramadol 50 mg. twice daily ( of which I have notices no relieve) Lortab 10 mg. twice a day, seems to take the edge of sometimes, celexa, abmien at night and a new vitamin supplement called Vemma, that is loaded with vitamin, minerals, and antioxidants ( I just started this about a month ago, so hoping it will help soon. I have a hottub and it is a lifesaver at times, but sometimes the heat makes the inflamation wores. massages and chiropratactic care does seem to help but it is so short lived but a least it is something. I could go on a long time but that gives you an idea. So I guess I am pleading for some ideas, the kind of doctors I should see ect. My husband as no idea what to do for me or with me as far as that goes. I just know that he gets pretty frustrated listening to my woes, so I keep alot of things to myseld, and then of course that does not help either. Becomes this might hit home to some of you, I am truly hoping to get some input. I have been a nurse for 35 years, I guess its now my turn to try and recive care giving from someone else... looking forward to reading reponses from this community

  2. 3gs

    3gs New Member

    It sounds like you are having a rough time. Unfortunately with this disease it is a guessing game,while riding a roller coaster!

    Excerise-gently if at all. Maybe just stretch or move around hot tub. Maybe you need to turn down the temp in hottub.

    Sleep is the best thing for you. Rest as much as possible.

    Meds-this can become a guessing game. Alot of us become very med sensitive and go thru changing them all the time. Its not unusual for one to stop working or not work at all. You need to talk to doc about this. I take 10mg lortab and clonezapam. Vitd 3 is key. We tend to be very low in this.

    Also grapeseed extract. Try a pain rub on your feet,this helps mine(nerve pain). As to what kind of doc to see. Hard to say. If you have one now that listens to you,will prescribe meds etc. stay with them.

    Understand about hubby,it gets hard with family and friends. This board can be great for info or venting.
    One suggestion-folks have a hard time reading posts that are not broken up,you may get more responses if you do this.

    Hope this helped a little-take care
  3. dhamaker

    dhamaker New Member

    Thanks for much for replying and yes your thoughts do help, just knowing I am not alone helps.Do you feel more agitated during a flare? That is another thing that I am noticing.

    Little things seem to bother me alot more than they used to, but when I take a antianxiety med. then the chronic fatigue seems worse, like u say its guessing game, and one that I will have to keep working on.
    I am seeing a new doc. on monday the first one that I have ever seen that specializes in Fibro so I am hoping for the best. My doc. has been good, but he says he only knows the basics and there has to be something more for me....thanks again
  4. curlycreek

    curlycreek New Member

    Hi, I'm new here too. So glad I'm not the only one to have that weird foot pain. Like others say about docs. Find one that listens & prescribes. One that is willing to experiement with pharms off label. I go to a couple different drs & stay with the ones that have ideas or take my research ideas & say "we could try that"

    Really interested in your fibro appointment. So do tell us all how it went.

    I take gabapentin for the painful muscle tightness & twitching. The mornings are the worst.

    Welcome to the venting train!
  5. 3gs

    3gs New Member

    Yes I do get more agitated during a flare!! Its almost like I want to jump out of my skin.

    Also can get alot more emotional,crying. I only take clonezapam at night for sleep as the leading doc said we have mini seizures. Try taking less off med. I take 1/4 of .05mg. goes back to med senistives.

    keep us posted on fibro doc.
  6. curlycreek

    curlycreek New Member

    One more thing. I think this is funny, I tried tramadol too. Blah, felt nothing. More like eating a tic-tac.

    But I read on the site for "safe" recreational drug use (oxymoron), that people really get a good high from it. There are somethings I'm not going to try no matter how much misery I'm in. But, I will share I did try the nasal route, thinking, o.k. maybe that would get it into my blood stream quicker.

    Never having used my nose for any recreational activity: #1 hurt like heck, #2 spent the next 2 days picking at the chalky residue, #3 did nothing for pain, felt nothing-other than a killer nose burn head ache.

    Just had to share, cause I think it's sort of funny I even tried this. I can guarantee I will never abuse my nose again. The things will try for relief.
  7. luigi21

    luigi21 Member

    I hear ya, im at my wits end too, seven years here, although they think it was pre-existing from age 13, but car accident 7 years ago triggered the widespread pain. All I can say is your doing the same thing everyone else is. I've tried so many medications I have felt like a walking pharmacy. My doctors response when i sat opposite him at the desk was, well your've got to pick from the ones you felt most helpful. Cheers. So thats what i did, ive been on co-codamol nearly 7 years, (mainly at night) ive messed around with the doses of meds to avoid addiction and higher doses which means worsening of pain and withdrawals sometimes. Amitripyline, although i couldnt tell you if they are working or not, five years on them, but when i came off them even though only on 15mg because any higher makes me hallucinate, i felt extremely low, and sleep was even worse. the best has been diazepam, but have to watch the addictive ness of this med. That said after 7 years i think i'd rather have some sort of life than been in agony all the time, diazepam helps sleep brain waves and muscle spasm. then theres baclofen, i sometimes take, (a less addictive med) but only on occasion. i take omeprazole because ive had problems with my acid reflux since age 15, i take baclofen for the ibs symptoms. All these are mainly taken at night, unless im having a really bad day because i find them impossible to drive safely on. So yeah, i wake up negative everyday, but what can i do other than put one foot in front of the other and make the most of it. could do without the stress of having to face tribunal for benefit money every year, the stress of people not understanding and feeling issolated, and the stress of the bloody condition. i wish the medical profession would pull its finger out and find a cure, but since heart disease and cancer are priority its not going to happen anytime soon. So each day, i suppose i make a choice to live with it. Somedays im glad, others i wish i could sleep for ever, the next im glad i didn't. Only people that really understand are those who suffer it. Ive been to pain management centres, they show you how to exercise and pace, and i still say this, thats fine for people with bad backs, spine problems, rsi, but fibromyalgia is unpredictable. But give it all a go, thats always been my attitude, get up and give it all a go, and that sounds like whats got you through five years too.

    best wishes from me to you
  8. momsherry

    momsherry New Member

    HI, I am so sorry to hear all this bad stuff you are going through. It sounds so much like myself, to a t. First I have had fibro and lots of other bad stuff since I was 20 and now I am 68. I feel young in my spirit but old in my body. You are one of the first to explain how much pain you have in your feet and how hard it is to walk let alone exercise. I have absolutly no padding left on my feet so I am walk on bones like marbles on the front part, a hammar toe and my heels hurt all the time. I can only wear mule new balance shoes and they can*t be tight with good insoles in them and good padded socks all the time now. So I really feel for you and your poor feet. This has been going on with me probably 24 yrs. I can*t go barefooted even across my wooden floor, just carpet to go to the bathroom. some times I even have to put a face towel under my feet to shower. I use to swim and tread water for an hour which helped my pain so much, but had to start wearing swim shoes cause the cement killed my feet. I take neurontin for nerve pain, muscle relaxer, med for restless leg syndrome, and 2 female meds for endometriosis. the other things are vitamines and things for my bad colon and rectum and bladdar problems. I have bad pain in all my joints. Please keep comming back here and remember my name so you can talk to me anytime you feel you need to. I wish I had a place to go like this yrs ago. The people on here are very understanding and there is always someone going through the same things and can give you some input on it. Take care, and hang in there, Sherry