I Hurt All Over Extremely Bad

Discussion in 'Fibromyalgia Main Forum' started by nashvilledon, Jul 8, 2008.

  1. nashvilledon

    nashvilledon New Member

    New here. Newly diagnosed.

    Have been having extreme pain all over in muscles and joints. Can barely get up and down or walk because legs and feet hurt so bad.

    I don't really know who to call or what to ask for....been taking 800mg of Ibuprofen, but that does nothing. Also on Effexor and Neurontin. There's also water on my legs around the knee and thigh....I'm getting panicky....this has been going on for a month, but just got progressively worse.

    Isn't there anything to relieve the pain just a little bit..??? I'm afraid to ask for fioricet or hydrochodone....but wouldn't that help some???

    I just feel a mess, depressed....can't get mind off the pain. I found this place and hoping for some answers. Already on disability, too...if that means anything...

    Thanks for any suggestions...I've never felt anything like this before....

  2. smokiebones

    smokiebones New Member

    My doc said I had FM he put me on naproxen & amtriptiline. I took them both everyday right on time, but I was still feeling horrible. I had more bad days than good. I told my doc at first that I did not want vicoden or other things like that because I did not want to feel "stoned" all day. When I couldn’t take the pain anymore I went back to my doc and told him that I could not stop crying, the amtriptline was not working I was still up all night, I hurt all over and a different body part was swelled up each morning! He asked me what I wanted to do. I told him that I would like something to suppress my central nervous system. Something for pain and something for my depression. He upped my dose of amtriptline. Gave me Cymbalta, Xanex and, Lyrcia. I read this message board and looked into drugs that I thought would treat my symptoms the best. I was well informed when I talked to my doc about what the different drugs do and how they would help me.

    Now I have more good days than bad but, I have had to tune into my body and make sure that I am not over doing it. The pain never goes away, I don't care how many pills you take a day it is always present in some form or another. That I can live with since it looks like FM won’t be going anywhere soon.

    Best wishes
  3. marti_zavala

    marti_zavala Member

    Hi Don,
    Welcome to the group. There is a lot you can do to help yourself with the pain but you may have to hit the pain meds in the end.

    Try to stay natural if you can. It is important to get the pain under control otherwise it starts to spiral.

    This is what I do for pain - 400mg magnesium, 1200mg malic acid, muscle relaxer, someimes baking soda in water (to neutralize acid in muscles).

    I also take Tramadol - an atypical narcotic - it is not controlled so you can get it from PCP. Inexpensive and effective for SOME people not everyone. You can't overdo any pain medication - there are daily limits.

    Neurontin can cause edema so that may be where that is coming from. I took effexor one night so not sure what the side effects are. (I had that paralysis side effect - frightening.)

    Most docs prescribe Anti depressants - they help some but not everyone. So don't let them railroad you.

    Most doctors don't really know how to treat you so you will probably get the most help here.

    There may be some co-infections and that would be important to find out to make sure they don't get carried away in replicating but you have time for that.

    Pain mgmt is the best idea right now. See if you can get sent to a Pain mgmt doctor. The way things are going most PCPs don't want to prescribe pain meds.

    Hope this helps,

  4. texangal81

    texangal81 New Member

    I was taking Celebrex until my insurance company started getting pissy about okaying it. I am now taking Mobic, it is ok but I miss my Celebrex. I also take Ultram daily for the pain and Vicodin when it goes beyond my usual limit. I'm getting ready to see a pain management doc to try to get on a maintenance routine rather than throw something heavy at it when the pain gets too bad. I'm avoiding the anti-depressants because of weight gain issues, I am having lap band surgery very soon so I don't want to add anything to make the weight issue worse.

    Pain meds do help a lot of people but many docs won't give them because of the legal ramifications. You do become physically dependent (it isn't a mind thing, it is a body thing) and withdrawal is,quite frankly, hell. But chronic pain sufferers often have to take narcotic pain medicine to be able to maintain a decent quality of life so this is where a pain management doctor comes in.

    Who did the diagnosing? If it was your PCP, did he/she suggest anything? If you feel like you are getting the brush-off, then get a referral to a rheumatologist or pain management specialist. You will find that most everyone here has found something that gives them some relief and those who haven't keep looking. What works for me, might not work for you, so keep an open mind to different options to at least try.

    I have found this board to be a lifesaver for me. I hope you do too.

  5. msnova74

    msnova74 New Member

    I can feel for you b/c I was you. :}

    It took months for me to find the combo that works for me.

    It doesn't make me well all the time, but I have more good days than bad.

    I have very severe reactions to meds so I can only begin them one at a time with about a 20 day interval between them.

    I "interviewed" MD's till i found one who really understood. She is about 45-60 min away from me in Oxford, MS depending on traffic, but so worth it.

    Talk to your MD to see what he/she tells you, you may be surprised.

    Also each person is different. What works for me may not for you and vice versa.

    For what it is worth, this is my magic cocktail.

    Neurontin 1600-3200mg sliding dose (for pain)

    Zanaflex 4mg tablets 1-2 3x a day (for muscle spasms)

    Tramadol 50 mg ( for pain taken with 400 mg ibuprofin)

    Percocet 5/325 for severe daytime pain (1-2 every 4-6 hrs)

    Lortab 5-325 for severe night pain (1-2 at night when needed)

    Visteril 25mg 1-2 at night (for sleep/anexiety)

    Elevil 25 mg at night (sleep)

    Ambien CR 12.5mg at night for sleep

    I also take suppliments.

    Magnesium, Malic acid, Vit b12, and recently added Vit D

    Hope this helps,

  6. Janalynn

    Janalynn New Member

    Hi Don and welcome!
    It's hard to tell you who to call without knowing a little history - like who diagnosed you - how were things left after your appointment? The Doctor who put you on Neurontin is who I would call.

    The swelling (or water)might be a side effect of the Neurontin - how long have you been on that? I couldn't take Lyrica because of the severe swelling.

    I went for a long time before I took any pain meds. I wasn't diagnosed yet, but my doctor gave me Vicodin and I could not believe the difference in my quality of life.
    The pain relief along with a great side effect - it helped my HORRIBLE IBS, finally helped me get through the day.
    Truthfully I wasn't embarassed asking for increases etc. because it is what I needed.

    Some of us who rely on pain medications to help us through the darkest of days, do have fleeting thoughts of going through withdrawls sometime down the road, but in all honesty, I know that my doctors will help me when hopefully a time comes that I won't need them. It may be a long way away. I can't deny myself relief, for fear of what I might go through years down the road. My pain is so severe some days, I am not sure how I would live.

    Call your doctor - better yet make an appt. Not only explain your pain levels, but more importantly explain how it effects your ability to function. Tell him you need some pain relief. Depending on how it goes, ask if there is anyone else he would recommend you seeing - (again, don't know who diagnosed you) - rheumatologist, pain mgmt, etc.

    Good Luck - be an advocate for yourself!
  7. Janalynn

    Janalynn New Member

    if your muscles are really painful, you may want to try a muscle relaxer as well.
  8. nashvilledon

    nashvilledon New Member

    About the diagnosis...I had a physician who ran tests for rheumatoid arthritis and osteoporosis and they came out negative. When I complained about muscle and joint pain he just said this sounds like fibromyalgia.....I went to a neurologist for migraines and told him my other symptoms and he said it was fibromyalgia and that Lyrica would help with both.

    The Lyrica took great care of the headaches but nothing else. At the time most of my pain was in my extremities. But the lyrica made me gain 40 pounds so fast, so they switched me to Neurontin. It keeps the constant migraines away, but then I developed more pain....it's like it spread everywhere. I've been on Neurontin for about 3 months now. The severe chronic pain started about a month ago, but seems to get progressively worse.

    I called my family doc and my neurologist yesterday. The neurologist never returned my call, so I'm seeing my family doc today. I want to ask for a pain mgmt doctor, but I also want some relief. I find myself crying and thoughts of suicide come and go. I doubt if I'd do it, but after a while you get so depressed about the pain. I want to ask for fioricet or hydrochodone....been on both before a long time ago because of migraines and had no trouble going off. I just want some relief when it gets this bad or is it going to get worse...I don't know. Anyway, I'm afraid to even bring up pain killers.

    I also take Effexor and Klonopin

    Anyway, I appreciate all the input I've gotten...

  9. marti_zavala

    marti_zavala Member

    I hope it goes well today. Don't be afraid to ask for what you need. You do need to get the pain under control.

    Hang in there, keep us posted.

  10. PVLady

    PVLady New Member

    In my humble opinion, you definitely need opiates to stop the pain. When the pain gets out of control it is much harder to control it.

    Yes, there are issues with opiates like tolerance, but there is also the quality of your life. In this day and age, there is no reason for a doctor to allow you to suffer. Believe me, if the doctor was suffering this pain, he/she would do something to stop it. They would not be able to practice medicine.

    Many here take Vicoden, or stronger meds like MS Contin and Oxycontin. If the light weight meds don't help, you progress to stronger ones.

    There are some excellent books you can get at the library on fibromyagia. The more you know, the more you will be empowered to get the treatment you need.

    One thing many have learned here is, if a doctor is not helping you, cut you losses and try another. Try to find a doctor someone has referred, who is familiar with fibro - and possibly who is not afraid to prescribe pain meds.

    I have suffered with fibro for decades and happily can tell you that today I am practically pain free. All the credit goes to a wonderful doctor I have seen for 5 years.

    Do not be discouraged, become proactive to get the proper treatment. Pain causes depression and once that is treated you will be happy again.

    On another note, if you are not already doing so, watch your diet for things you eat that cause more pain. For me it is too many sweets, chocolate, etc.

    Get as much sleep as your body wants, even if you are sleeping until 2-3 pm. Sleep is the great healer and lack of sleep can really aggravate pain.

    If you can take a hot bath with a few cups up epsom salts and a large bottle of peroxide. Soak for 20 minutes and go to bed and rest.

    Try your best to reduce stress and anyone who is "toxic" to you, keep a distance.

    You can get better. Many of us have been where you are and have improved to the point we are almost normal.

    Have you been tested for Epstein Barr Virus? Some of us have high levels of this virus and it can cause the fibro and cfs symptoms.

    Hope you feel better soon. Oh, Ibuprophen is very hard on your stomach. If you can catch a fibro flare at the very beginning, sometimes taking two alka seltzer stops it. Alka seltzer creates a more alkaline system and has aspirin which is anti inflammatory.

    When you are feeling better you might consider a massage to locate trigger points that cause pain. Massages are helpful.

    [This Message was Edited on 07/09/2008]
  11. nashvilledon

    nashvilledon New Member

    Well, I went to the doctor and he said my pain was spread out that it didn't fall into line with fibromyalgia.....I disagreed and finally talked him into giving me Lortab for 30 days until we could find me a good pain mgmt doctor or rh doc.

    They decided to run a lot of blood tests to see if something else was going on.....

    I got the whole run down about trigger points, exercise, and sleep. I seemed to know more about fibro than he did....

    I just got a bad feeling that I'm going to be fighting a lot. It seems I always have to fight to prove myself...I do research a lot, but sometimes you just get weary, esp if you have this syndrome.

    I'll keep coming to the board...it seems to help to have others that understand you.

    I can't thank you guys and gals enough.

  12. PVLady

    PVLady New Member

    Many of us here went through many doctors until we found one to help. You need to become your own advocate. Coming to this board helps you to be more proactive.

    I posted a thread by Dr. Bennett on fibromyalgia. He is telling other doctors how to treat fibro. These days, doctors who don't want to learn about fibro should be passed over by the fibro patients.

    Even Montel Williams has to see more than 25 doctors to get his diagnosis of MS. I am sorry it is so hard but once you find a good doctor, you will be happier.
  13. msbsgblue

    msbsgblue Member

    Now I have both Ultram and Percocet on hand at all times. I take Ultram on lesser pain days and 10/325 Percocet on my worst days which seems worse every year. I have had this illness 20 years now.

    Percocet works relatively well for me, I am allowed to either take one or two.

    By the way never take Ultram or Percocet at the same time, in fact I won't take them on the same day.
  14. Janalynn

    Janalynn New Member

    Hi Don,
    The Doc said because your pain was spread out so it didn't fall into the fibro category? Fibro IS widespread pain. Hmmm.
    Well I am glad he gave you something to at least get you through til you can see someone else. That's good news.

    Don't give up! You've gotten some EXCELLENT advice. You also sound like a fighter. We've all had to become them if we didn't start out that way.
    As others have said, no one should suffer. NO ONE!!!!
    DO NOT ever be afraid to ask for what you need. If they say no - well move on.

    Get as much good sleep as you can and of course, keep coming here! =)
  15. layla1954

    layla1954 New Member

    Hi Don,
    I lived in the Nashville area (Mboro, Nashville, and Thompsons Station) for a long time and saw the same doc for 20 years - Dr. Margaret Stolz. She was terrific! Very supportive. I don't know if she's still in practice or not; she was at the Nashville Med Grp near Baptist Hosp.

    It REALLY helps to find an MD who understands. Meanwhile, keep doing your research and coming to this board for support... WE get it, if no one else does.

    Regards and good luck,
    layla1954 (Lee Ann)
  16. praise

    praise New Member

    Coming to this site was a giant step in the right direction. You will get hundreds of suggestions because unfortunately there is no magic bullet for the multitude of symptoms we suffer. Meds are trial and error to find what works for you. So are doctors. For some massage, for others chiropractors, others physical therapy or pain management clinics, but most important is a Compassionate Physician who understands and has studied Fibro.

    I was finally diagnosed 10 years ago, after already suffering for 5 years. At least now, Fibro is considered a real disease and not something we are imagining.
    In my opinion, it's extreamly important to get the stress out. Stress is a huge aggrivate and will prevent improvement. It's easier said than done, but you have to begin. Listen to only positive things (speakers, preachers, music, people in your life, things that make you happy, funny movies, etc.) You have to have hope! "Laughter is great medicine." Anything to help get your mind off the pain.

    Another tip: watch the weather and study the fronts. You will be able to chart how they affect you and be better able to plan your days. If there is a strong front headed your way, forget going any where. For example: From Friday of last week until Wednesday, it was hot and humid, with no rain, and I was mostly in bed, in pain. But yesterday, finally came a wonderful storm. My relief was almost instant. Pain was gone and energy restored (at least for a while) so I went to get groceries. I can feel a strong cold front coming sometimes when it's 3 states away. If it's a weak front, maybe only 3 hours away.

    Perhaps you can make a chart listing your symptoms and under each symptom list different suggestions you read about for relief. It's a start..........Don't give up!
    There is hope!
  17. nashvilledon

    nashvilledon New Member

    My doctor is a real nice guy, but so by the book. He didn't seem to know much about fibro at all...just the basics. I know I will probably have to leave him for someone else.

    Layla I checked out Dr. Stoltz and it seems she is still in practice.

    My doctor's biggest concern was the pain meds I wanted. I literally just demanded it. I told him 30 days of Lortab won't get me addicted...I just wanted some relief...I know it masks an underlying problem. But until I get into see a specialist I didn't care if it's not the end all or whatever.

    I remember telling some docs at Vandy 3 years ago about weather and how I thought there was some kind of relationship for which my pain is worse. I literally was made fun of about that. It's just frustrating.

    I did want to ask you all about pain meds...I do have my reservations about them. No one wants to get addicted. But I've been on the same amount of Klonopin for 10 years and never had to go up after a certain level. Is it possible for pain meds to act the same way....where you find just what you need and stay there?

    I have to say the one lortab I took yesterday gave me such relief I thought I'd cry. For some reason I didn't get tired like they told me...I just caught up on some things I wanted to do....nothing strenuous. Even though there was some pain there some of the stress just went away.

    I know I'm right about my body and I guess I will do some of what Praise said and document some things. I also found out that certain foods may tend to irritate or agitate the problem. I'll keep ya'll updated.

    Love and peace,


  18. baanders

    baanders New Member

    Something like nortriptyline helps greatly with the pain! I can't tolerate it. It is a tricyclic antidepressant that also helps with deep muscular aches and nerve pain, and depression.

    Some people need 2 antidepressants if they are really depressed. Don't be afraid to see a psychiatrist. My psychiatrist doesn't talk about problems (I was in talk therapy for 5 years), he listens and gives me the meds with $15 copay once a month, it's so easy.

    You might get a nice ulcer with all that ibuprofen. 2 of the best anti-inflammatories are Voltaren and Daypro. Daypro almost gave me my life back, but I developed bleeding ulcers (probably won't happen to you).

    Neurontin only works for a year at most, so I've read. You might want to get the pamphlet by the Fibromyalgia Network (Patient's Guide) so you can be informed on what drugs may work for you. You should be just as informed as your dr.

    I do not suggest narcotics, unless all options have failed. Read up on Post Acute Withdrawal Syndrome. I'm in a depression from taking methadone, and it also happened on Percocet. Sure, I think taking opoids on the bad days are good, but since you havn't tried other things, please last resort.

    Also, you should really see a rheumatologist. They are the specialists. They can work with a psychiatrist. You want to be happy while you battle this, so you could go into a remission.

    Best wishes.