I certainly get the fear you have about your pain medicine. I've been taking hydrocodone for well over a decade for a combination of a full-fledged every common and uncommon symptom Fibro and two damaged cervial disks.
I believe you are most likely undermedicated. Your sensitivity to cold is most likely a result of your fibro not being adequately controlled. When my pain is raging, I take on a ultra sensitivity to cold. Often the only way to quiet the Fibro is to use a heating pad on my neck or trigger points. I become much less tolerant to cold.
I firmly believe in the importance of containing pain. If you don't tackle the pain, your body develops a memory so that when pain rises during a day, it takes off faster and becomes more harsh. Plus there is nothing acceptable about the yo-yo you're experiencing all day long. In this day and time there is no excuse for anyone to put up with debilitating pain. Are you dependent, sure. So am I. So, What?
I am disciplined with my narcotic prescription. Sounds like you are too. I inform all my doctors about the medicine I take. I have one pharmacy. I have one doctor prescribing - my Rheumatologist.
Don't let anyone make you feel dirty, creepy, like a druggie or anything shameful. You have a legit reason to use a well thought out solution to pain. Believe me if those people who glare at you over taking narcotics had your discomfort for one day they'd be screaming! I think Fibro folks forget what they're supposed to feel like; they've no idea what it's like to be pain free.
In the first 2-3 years I had to work with my doc to get the dose right for me. Not only did I need a certain level of control, we discovered I metabolize medicine about 80% faster than most people or what is suggested on the medicine's info insert. In fact, the yo-yo effect became so bad for me that my psychologist recommended a patch which delivers relief for two to three days at a time. It was a Godsend. Sure over time it will take a higher dose to squash the same amount of pain as our body desensitizes to the impact of the Rx. Hopefully, though, over time we will learn and use other ways to abate our pain. I haven't changed my Rx in over 10 yrs. Sometimes I have a week's worth left over at the end of 30 days. Sometimes the raging disease requires the full dose.
I hope you feel comfortable speaking with your physician about getting a little better relief. It's pure bunk that you need to back off and grovel to those who look down on you for having pain that requires a narcotic to get through a day in your life. I used to have people say, Oh my, I just can't take hydrocodone. I took it after my dental surgery and it made me fall asleep. Well, let's see-that's you! There are many reasons there is a difference between us. Just Shut UP! until you have lived in my place. What the Rx does do is lift a huge weighty burdon off us so we can operate. It doesn't drain us or put us to sleep; it actually allows us to function and gain energy since we aren't under the yoke of heavy pain.
I'm not a doctor. I'm a layperson. I believe you may be undermedicated. Or taxing yourself more than the Rx can handle, or not finding any effective alternative means to beat back the pain. My point is you don't have to hurt terribly every day. Sure, strong, potentially dangerous medicine should be treated with respect. And..So...should...you!
I would definitely venture to guess that you do have an addiction to the hydrocodone... I realize you don't want this dependency, but it's there, none the less! (HUGS)
Have you considered lessening your dose, say... take a half of a pill instead of a whole pill? Have you considered taking a Tylenol Arthritis in place of the pain pill? The reason I suggest Tylenol Arthritis is because 2 tablets is 1350mg of pain meds...they have worked wonders for my Fibro pain.
I am also affected by cold temps and temp changes; the pain and fatigue is horrible! I know exactly what you mean when you talk about staying outside in the sunshine. It's like I need the heat to warm my bones! LOL
I've tried almost every narcotic I can find, and in all honesty Hydrocodone is about the best thing to help with my pain, but I also realize that it's not a healthy way to live. My Dr had hinted that she was going to stop giving me the script and I got really worried that I would have to suffer through horrible withdrawals, so I started lessening my dose over a period of several days. Now that doesn't mean that I didn't hurt any less, because I did, but then I was able to think clearly again and start fighting the symptoms and environmental causes of my pain, not just masking it? Ya' know?
My best advice would be to take control of your situation and decide how YOU want to proceed? I'm in the process of researching all I can on Fibro and attacking my symptoms with improved nutrition and supplements! I just simply can't live my life addicted to prescriptions.... I want to have control of my life, again!
Lots of luck to you and don't give up, you will find help and you will find encouragement here on the boards. Maybe you could consider taking Savella??? This is one drug that has done wonders for my Fibro. Talk to you Dr about taking the Titration pack to introduce it to you system.
Sorry, didn't mean to ramble on... I could write a book about what I've learned about Fibro and everyone is different and what works for one, doesn't work for everyone!
That thought has been in the back of my mind and it brought tears to my eyes to read it as advice from a fellow sufferer. I did back off to half a pill for a few days and then had a bad flare up because I over did it and haven't gone back to the half pill yet. I go for as long as I feel like I can but have to end up taking one or leave work to go curl up in bed. But I will try the tylenol arthritis and try to back off.
Yes!! Someone who says the same thing I do! "Warm my bones!!" And feel free to share your book with me. Please! :)
I'll have to check into the Savella. I haven't ever heard of it or Titration. I have such extreme reactions to medications. Anti-depressants cause me to be depressed within about two weeks of taking them. Prozac nearly killed me with an allergic reaction that took 2 wks to work up to it and then 2 wks to get it out of my system. Lyrica and Neurotin almost sent me to the loony bin. I honestly thought about committing myself on the Neurotin. For my next adventure, I went on omneprezole (prilosect) for stomach issues. Started having migraines just long enough after starting it that I didn't connect it for months. In trying to cure the headaches we tried topomax, it caused a stroke like experience and it too made me seriously consider seeking help in a hospital.
Thanks for your post. I'm so glad to have found this site. It will help more than an md could just in emotional support.
Thanks again and feel free to ramble any time.
I've also had the migraines that sent me to the ER...after an MRI and CAT scan they Dr's were basically telling me they couldn't do anything to help me. One Dr did tell me that she thought it was my body -rejecting EVERYTHING. She told me I was imploding on the inside and that if I didn't do something to improve my lifestyle and take control of my stress, I would never find any peace.
I didn't really take her advice to heart until I was handed the diagnosis of Fibro and along with that I realized in a six month time, my body was slowly and painfully dying (or at least it felt that way) and I went from taking no prescrptions to taking 6 different medications EACH DAY! So fast forward about 6 months of taking the 6 meds and the brain fog slowly started to lift. I was taking 3 meds for high blood pressure, Pristiq for depression, Savella for Fibro, prescribed muscle relaxers for back pain, Xanax for Anxiety...., I felt like a walking pharmacy! My arsenal of medications was costing hundreds of dollars each month and basically I was dependent on these medications to even be able to get out of bed! UH... HELLO..... I'm 40 years old!!! This isn't the way life is supposed to be!!!
I guess you could say the light bulb went off!! LOL
I'm now heavy into vitamins and supplements, but I didn't just jump in with both feet. I entered into the supplements very slowly and I'm still adding new ones as I can. I would whole heartedly recommend starting off with a good gallbladder/kidney cleanse! You will be amazed at how much better you feel, instantly. I did the home remedy of epsom salt, water, lemon juice. There are tons of websites with the recipe. Give it a try!
Next I added Olive Leaf Extract. There are no adverse reactions of side effects with other medications, so it's very safe and doesn't cause any stomach upsets. This seems to be improving my energy and most definitely it's known for improving cardiovascular health. Here again... there are tons of web sites that promote the benefits of Olive Leaf Extract.
I'm also taking multivitamins from *******... I'm not a ******* distributor, at all! I just truly enjoy their products and fully believe in their products. I've seen the miracles they have worked in my own life and in my dad's life while suffering with Leukemia.
I've probably gotten the reputation of QUACK from my family and friends because I alway have some kind of oil extract or vitamin that I'm trying, but in all honesty.... I noticed a huge improvement in how I felt within a WEEK of starting the Olive Leaf Extract and then it just kept getting better from there. I can also say that during that first week of taking the Olive Leaf Extract, I was able to NOT take any pain meds!! BIG BONUS!
Currently, I'm down to only taking 4 presciptions a day and I hope to be able to start reducing my list when I go back to the Dr. I don't want to completely discount prescription meds, but I don't want to depend on them either? Ya' know?
Since I'm not sure with how familiar you are with vitamins or supplements, this is the link that I read and re-read and got started in the right direction. http://www.fms-help.com/ --- her personal story really hit home with me and I could identify with her struggles.
Please feel free to keep in touch with me...
"Titration" means "increasing", or "decreasing". Such as, "I'm going to titrate my coffee intake"...for myself, that means decreasing slowly. Or "I'm going to titrate my chocloate intake"...for myself, that means increasing slowly. :>))).
The Savella comes in a Patient Starter Packet that contains 2 weeks of medication. You start on one small dose, then the next day you increase, and so on; until you've reached recommended dosage. Which for some fibro people is 25mg tablet, twice a day. Some fibro people may do well(pain manangement) on lower, or higher dose.
If after you've done your research of the medication; and you decide you want to try it, I'd ask the doctor for 2 Patient Starter Packets. One packet to "titrate", by increasing doses, and the second packet to use if you have negative side effects, you can use it to titrate back down. It is recommended that Savella is "titrated"/decreased slowly(unless medical emergency).
I increased more slowly as I do not tolerate medications well. Unfortunately, I experienced side effects of high blood pressure; increased bounding heart rate; no appetitie; increased insomnia....and a very bad MOOD from hades; I mean the anger-type.
To answer the BIG question, did it control my pain?....YES, it was heaven. Only you can determine if you're satisfied with your current pain management program.
I take magnesium and can tell a major difference when I don't pick any up after running out. I will have to try the olive leaf extract soon.
Mon - Friday last week was horrible. I was taking 1/2 a hydrocodone and 2 of the 650 mg tylenols. I was in agony!! Saturday we took out granddaughter to a theme park and it rained on us most of the day. So I took the hydrocodone as a preventative, she is 3 and I couldn't chance issues with pain. Had it been sunny I wouldn't have taken them until I needed them. Sunday, it was warm in church so I felt great. It was cold in the restaurant and I started hurting rather quickly. Got home and spent the afternoon out in the sunshine, didn't hurt at all. Went to church it had cooled off in the building and 15 min into it I had to take a pain pill.
Yesterday, I was the only one at the studio. I cranked the heat on when I got there to get the temp up from 73 to 77 and then left the air @ 77. Had a great day. Had customers coming @ 4 so I turned the air down to 74 for them and by the time the air kicked off from cooling it down I was miserable again. I am really thinking it's not addiction. I can do fine with out them as long as the environment is 'my perfect'. No clouds and rain, no cold air blowing around me. As soon as I walk into a cold room I feel the muscles stating to scream.
I am scared of any 'brain altering' medication. Whether it is anti-depressant or anti-seizure. They do wicked ugly things to me and I can't afford to be so out of it on my job or at home. I have enough issues with angry spells with my hormones right now. I had problems with the neurotin causing me to explode unexplainably. Evening primrose oil and/or Black Cohsoh, I started taking to level out my hormones, caused me to have migraines again.
It is hard to feel so helpless with your own body. If I ever get something really wrong with me that a medication is needed I will probably have some horrific adverse reaction to it. :(
Thanks you guys.
I went back and read some of your following posts. You poor thing. I can't believe anyone should take neurontin nor topomax for Fibro. They are both extreme medications with no proof of working for Fibro. I took half of what I was supposed to start on Topomax, only 12 mg.or 1/2 of 25 mg and I nearly lost the use of my mind. I don't know how to make you believe that is literal Neurontin gave me acute, permanent tinnitis or ringing in the ears. A hateful problem. I have grown very cautious and always read up on any newly suggested medications. I must know about what side effects I could expect. I the drug is off-label, forget it. If it's too new, and has no long-term history, forget it. I have enough problems. I do all the other things I should and keep up with on-going tests. Topamax was a tough lesson. I do believe that anxiety or emotional upset makes Fibro worse. I lost a son a while back. I found that my emotions were on a hair trigger. Not depressed in the classic sense, but I turned to Wellbutron. I am very happy with the results. No other anti-depress works for me. I absolutely don't use any sleep remedy. I choose to develop a routine and environment that supports good sleep. I'm so with you. All those epilepsy type drugs are off my list, period. They are like throwing something against the wall to see if it sticks, a total crap shoot. Not for me. It sounds like you're getting there. I'm sorry it's so challenging and you've had such a difficult time with trial and error stabs at medication. I have a post on my profile which outlines my experience. You're welcome to check it out. Best Wishes
To be clear I take generic Norco, which is 10 mg of hydrocodone and 325 mg of Tylenol. (less tylenol is easier on your liver) My patch is Duragesic. Interestingly, the Duragesic really reins in the fibro symptoms with little breakthrough. The Norco tackles the pain eminating from my cerical disk damage. Can be overwhelming pain sometimes and non-operable. As I mentioned, my narcotic Rxs haven't changed in over ten yrs. Not my favorite or desired avenue for help, but it is what works.
Thanks for your help and I am so sorry to hear about your son. My husband lost his 14 year old daughter the year before we met. I too have medication left over at the end of the month. They have prescribed 3 tablets daily as need and I have had as many as 45 left over because I can get through most days on 2 and sometimes one.
The topomax was for the migraines. Made them worse and even caused stroke like symptoms.
I went to my OB/GYN and got back on my hormones. (Partial hysterectomy 9 years ago, HRT 7 years ago.) I quit the hormones when my neurologist suggested they might be causing the migraines. After finding it was the stomach med (prilosec) I honestly thought I didn't' need the hormones any more. Then my short term memory went out the window. Just had a MRI so I knew I didn't have a brain (or lack of brain) issue. The doctor said it would take a while for the estrogen to build back up in my system and not to expect miracles in the first week. MY FEELING COLD ISSUES WERE GONE THE NEXT DAY!! WOO HOO!! Hopefully the memory issues will be better soon.
I know I will still have issues feeling cold when I have flares and I too use heat therapy. But the every day thing is not an issue. My husband bought me a tanning bed several years ago. It needed bulbs but I haven't replaced them because I don't use it to tan but for warmth. It gets the most use late fall early winter. (If i need a tan I have to pay for sessions some where else LOL)
I am thinking of trying the savella. But I really need to research it first. New meds really scare me.
I have tinnitis for several years with no apparent cause. It came long before the neurotin.
I do use lunesta for sleep. Without a sleep aid I will go into dream sleep but I feel like I'm awake watching the dreams and wishing I could go to sleep while I am watching the dreams.
I will talk to my primary care about the 10/325. I would love to have less of the tylenol too.
I am not clinically depressed either. Sometimes I let things get me down, but I choose not to stay there. But I used welbutrin to stop smoking 10 years ago and it is the only anti-depressant to not cause me to have depression. I recently asked for it again when I was dealing with my youngest graduating high school and some other stuff, and it made me down right irritable, but I was also dealing with lack of hormones as well.. I have found that a med that my body needs will do well, a med that it doesn't need will do awefull stuff to me.
Thank you to tatanka and vintagechicken too!! I love this site. Thanks for being my support group. I don't know ya'll but I love you for your help. I have decided I need to start going to a shrink just to have someone to sound off too. I won't do it to my husband and my friends and kids have their own problems.
Thanks again, please keep me informed of things that have helped you.