I was recently diagnosed with fibromyalgia and had my first pain clinic appointment this afternoon. it was just a preliminary consult to get history and physical. I will see my Dr. next week. meanwhile they gave me adequate medications to keep me comfortable until my next appt. which is nice, i finally was able to get up off the couch and do some housework. which i am sure i will pay for tomorrow. anywyas, my question is people with my condition or that are knowledgable in that subject.... aside from narcotic pain medication are there other things i can do to help? are there things i should avoid? i am just new to this and was just hoping for some advice. any foods that help? supplements? i am 30 with a history of mental illness which is well under control.... i would just like some feedback about what has worked best for you, or things i should avoid, such as foods, etc...anything will be helpful to me. there are so many websites about this that i hardly know what to believe in. i am already taking lyrica, but the problem with that is after this bottle i dont havee any more. they gave me all the samples they could and my ins doesnt cover lyrica yet because it is so new. and it is frightfully expensive living on a tight budget. ive also tried ultram (tramadol) and ibuprofen 800. the ibuprofen worked wonders but the ultram gave me massive headaches and nausea due to spinning feeling. almost like being car sick or seasick. i get motion sickness a lot, at the drop of a hat. hate it. so i will avoid it if i can. the vicodin they gave me is helping immensly, as it should. it is the highest dosage they have, and then they move on to oxy. i am not that bad yet and hope to be better here soon. i atl least want to be able to walk out side and feel the grass and smell spring. and as of now, i dont get that. call me a whiner but i can hardly leave the couch much at all.. swollen ankles and feet so bad it hurts to walk. and besides that... all my friggin "fibro fog" I'm sorry to hear about your diagnosis; I was diagnosed with Fibromyalgia years ago, along with 3-forms of inflammatory arthritis, degenerative disk disease in my spine, and a host of other pain-causing conditions, so I know where you're coming from. Welcome to the confusing world of pain diagnoses.
I think you're on the right track, being tied to a good pain clinic; you need to listen to what they tell you and follow their lead as much as possible. They will have tried and tested most everything on the market to see what works and what doesn't, so learn to trust them early on. The more you're able to place your faith in them, the easier it will be for you to develop a working relationship with them that's based in trust.
One thing I think would have been helpful to me ~ had I been able to implement it in my life ~ is a schedule for breaks and rest. Fibromyalgia is a condition that really wears a person down; you're constantly fatigued, in part due to the disorder itself, but also because being in pain is very tiring. You need to plan rest periods into your day to make sure you get enough appropriate "down time" to care for your body the way it needs to be cared for. If you fail to do this ~ if you run around thinking "I can do it all" now that you've been diagnosed and will be under treatment ~ you will only harm yourself all the more.
You may need to sit and rest for an hour every morning at 10:00am; if so, then build that into your day, every day, and don't let anyone take that time away from you. That's time when you don't answer the phone, you don't run errands, you don't do anything but sit with your feet elevated, head tilted back and eyes closed ~ with an alarm set so you can get up and move again at 11:00am. If an hour is too long, then shorten it to 30-minutes; if it's too short, then extend it to 90-minutes and see what happens. But, you've got to start somewhere, and you've got to make it a part of your schedule from the beginning.
I can't begin to tell you how important it is to take your medications on schedule each and every day. My father doesn't understand why I have an alarm that rings on my cell phone each day at 3:00pm to remind me to take my medication -- it's because I'm not always aware of what time it is, and I don't want to be late with my meds and throw the system off track. It's more important that I stay on schedule than whether the alarm annoys him. My alarm rings at 7:00am, 3:00pm, 7:00pm and 10:00pm, 7-days a week. I stay on schedule with my meds, and they work better for me that way.
And always, before you even think of adding any herbs or nutritional supplements to your diet that you've heard may improve your health or mood ~ for instance, I believe that it's St. John's Wort that's supposed to help with depression, and Valerian Root that's supposed to help with sleep disorders ~ always check with your doctors first. Some of these herbs and nutritional supplements can be dangerous when mixed with prescription medications ~ some reduce the amount of the prescription medications your body will absorb, where some will increase the amount your body will absorb. You can cause an accidental overdose, if you're not extremely careful. The same goes for alcohol and recreational drugs ~ you can really hurt yourself without even trying.
For me, it's just easier to stick with traditional medicine at this point in time; I take over 14 prescription medications on a regular basis, and the chance for a bad reaction with some herb or nutritional supplement is just too great to risk. I leave the pharmaceutical end of things to the professionals.
The only other thing I can suggest is to relax. As one doctor told me, Fibromyalgia is not fatal; you won't die from this, it will just make your life miserable. :-) Don't panic, and you will be fine; you can work with this and adjust your life around it as necessary. Be kind to yourself is the best advise I can offer.
If you have any questions or need specific advice, check into the Yahoo Groups, or feel free to contact me via e-mail.
MinPin You are lucky the narcotics help-they do not for many people with FMS.
FMS has been believed to be a disorder of the central nervous system for about 10 years now-previously it was wrongly thought to be a musculoskeletal condition-it does have musculo Symptoms-but the actual Syndrome is beleied to originate from teh Neurological system
That is why Narcotics have minimal success-they treat the symptom (muscle pain) not teh cause- Neuro
The drugs that have been most promising are Neuro in nature
Lyrica in the antiseizure class is the only FDA approved drug
other drugs include other antiseizure, antidepresant, Neuro Painmeds like Tramadol (ultram).
There should be clinical trials in the US for a drug already used in Europe- It isoral flupirtine. It is non opiate and acts on the central nervous system i use neurontin (gabapentin)instead of narcotic pain medications.
it is much easier to talk the doctor into writing a scrip for them.
there is a supplement called GABA that helps it can be found at health food stores.
menwithfibro.com has the best info without the bull.
like fibro is caused by lyme disease. and all the useless fibro drug scams..
us men don't stand for the scams on our site. We kept my wife's aunt for 2 years and if her diet was limited, she ignored it. She suffered a lot, but she was in her 70s. Sometimes she would take her medicine more than prescribed. Said she didn't care as long as she could get some relief.
You are very young to have this condition. I hope you and others with it find help.Meanwhile try prayer and I will be praying for you.--Bea One of the leading authorities on Fibromyalgia and Chronic Fatigue Syndrome is Dr Teitelbaum. Here is a link to his site.
http://www.endfatigue.com/
His book Pain Free 1-2-3 is very imformative also there is a drug out on the market now called Lyricia. This helps with the nerve neuropathy problem that comes along with this diagnosis, you know, when you feel like your legs are just going to explode with pain. It does have some side effects so if you can't use that then another prescription drug that is now being used is neurotin. I have found that ultram heps me better than the narcotic medication. It works wonders and I am able to continue nursing. Stress brings on acute flare ups and caused you to have some bad, painful days so try to avoid that also. It also effects your sleep. You may want to get an over the counter sleep aid,. Just make sure it does not have benadryl/diphenhydramine in it. Hi Sunshine,I've had fibro over 14 years & dx'd with cfids,an autoimmune syndrome,some say related to fms.Who knows?
Lyrica is the latest med for fms tho not all can take.Celebrex & Neurontin also help.The Neurontin was originally used to treat epilepy & Dr's found that it helps relieve the nerve irregularities in some fibro/cfids patients as well.Allergic to all,LoL but have other meds that do help somewhat..
Excercise in moderation will ease the pain & stiffness you feel.Most of us with fms find a heating pad on our shoulders/back does relieve most of the pain..The symptoms of fibro aside from the usual vary with each individual.Some can work others are unable to.
Most at times have what we call 'fibro fog' when one can't focus or remember the slightest thing.If that happens Sun,don't think you have Altzeimers or going loopy,laugh & have a sense of humor which is a must!
Read everything possible about fibro,good sites only..A great book on fms/cfids is "From Fatigued to Fantastic" by Dr Jacob Teitelbaum..Also,http:www.immunesupport.... has a forum where those with fibro/cfids can share their problems,questions as well as fun things in their lives..I've made many friends there thru the years & have met with several of them.. A good support system is a must esp when we have a invisi ble illness..
Whoops,d/k what hapened but scroll down to see more of my response.. Sorry about that....
Oh,some have found holistic methods have allieviated some symptoms,such as accupuncture,magnets ie.Haven't gone that route but you may want to consider this..
Making changes to your way of thinking ... what ever you need to do, to continue living, but with a better view ... You know the old clich茅 ....stop and smell the roses. Be in the now, not yesterday, not tomorrow, be in the now, right this second.
Our lives are NOT over, we are just, in the re programming stage, in limbo, tired, ready to fight, ready to re look at our lives, to SLOW down, mufti-tasking was invented by doctors, so they would get more business,LoL Just be aware of your limitations & don't overdue it..All of us,sick or well have limitations so don't allow this dx to get you down..
Getting tired but if you have any more questions,will gladly email you if you want.Need an addy ok?
Best wishes, a survivor :-) I have a Yahoo blog where I listed all the stuff I found helpful just for people like you. It took me several years to find the things that helped me and if I can help anyone else with the blog, then its all worth it. Read my blog! Look for the entry entitled "What I found that helps me". It goes into detail.
Much of the treatment of fibromyalgia is things we can do for ourselves to lower our pain. Many people are just too stubborn to even try to see that they can make changes to improve their lives.
http://360.yahoo.com/profile-u92l7DQ6crV...
It IS possible to feel better, people with negative attitudes will never improve. They are a self fulfilling prophecy. All those negative thoughts feed their pain literally. My wife has had fibro for the last 10 years, so we have been to many doctors and she has been on many medications. I have gotten frustrated with the lack of results that we have been getting so I started doing some research on my own.
After reading about all the garbage, pesticides and radiation that is in the food we eat, my family started going organic. We threw out our microwave, no more radiated foods. The food tastes better and it is better for you. I also found out about a juice called Mona-vie (check out the sight below) after taking this juice her pain levels have dropped, she sleeps better at night and her fibro fog that she normally had in the mornings dissapeared. |
