... new dr doesn't think so. I'm 41 and I had my first symptom at 23. I'm soooo tired of hurting. I just want pain meds to make it go away, but no one wants to prescribe them, they give all these alternatives that don't help!!
You will find that there are a mixture of meds that end up helping you. There is nothing that makes fibro pain go away totally. One of the biggest things you can do to fight it is get a good nights sleep, every night. That is 7-8 hrs, every night.
We can tell you what we take, but your meds will be individualized for you. I take Effexor, gabapentin and tramadol ER. I take melatonin to help with sleep. Its a matter of trial and error, until you find something. You need a good diet, and vitamins. There are other things we do for the pain, like massage, sports rubs, acupuncture.
Since every human is different, different drugs will work for you than might work for someone else with your diagnosis. It's a trial and error sort of thing. Try one drug, if that doesn't help, try another. Hopefully, the right combination will be found that helps to alleviate some of your pain symptoms. Mostly, I am a chronic pain person for the past ten years, if the docs gave you enough medications to make all the pain go away... not very good for you seeing your next birthday. Hope goes a long way, work with your docs, research your fibro diagnosis, be informed, cuz knowledge is power... my belief. And it helps in communicating with your doctors.
I agree totally with the ladies. I just want to add a word of caution. Many doctors don't care for their patients coming to them with too much knowledge about what medication they want. Particularly when it pertains to pain meds. So be prepared to go through some more of the alternatives before you may get placed on any pain meds. If you are trying to deal with this with your regular dr, you might ask him to refer you to a pain management dr instead. He'd probably agree to this since most pcp dr aren't comfortable dealing with long term pain management which is something that fibro would require.
I wish you all the best in your search for relief. Please keep coming to the site, there are a lot of people here that are not only knowledgeable, but very caring and great to talk to!
Hi playful ~
Wow, you have had quite the reversal of opinions here concerning your condition. I wonder how a doctor would treat you for so long and be so very wrong??? Somewhere along the way certainly a set of spinal X-rays for a baseline followed by a series of X-rays over the years would have determined whether you had AS or not, right?
What kind of symptoms did you present with when you were 23, if you don't mind me asking? Without a proper diagnosis, no doctor is going to start treat with pain meds. The treating doctor needs to know "why" first. They tend to go with the minimally invasive approach then it's the trial and error thing. But without knowing exactly what is wrong with you, it is difficult to determine who should be treating you. Were you seeing a rheumatologist before to get the original diagnosis of AS? Maybe some of the meds you were prescribed for that condition have actually exacerbated your condition, whatever that may now be. There are also a lot of pain meds and steroids that wreck your bones, too... literally sucking the calcium right out of your bones causing osteoarthritis later on. That is what I am dealing with now plus other stuff. Doctors must be so careful these days...
Just giving you pain killers not knowing the underlying cause might just kill you. You don't want that... you just want better, right? It is a process, if one doctor isn't willing to do his/her job and "treat" you properly... then find another one... if that doesn't satisfy you... then find another one. I know it is a royal pain in the neck when you already don't feel well. Running around probably isn't easy either. I hope you have kept a journal of your symptoms and the treatments that have been given you through the years. In this day of the internet, some patients have actually come up with their own diagnosis then talked with their PCP about it to get better direction, suggestions, referrals or whatever it takes. You are your own best advocate and you are the best one to fight this battle. You have a voice and make yourself heard.
Going from a diagnosis of AS to Fibro just doesn't add up. I am sure you are doing your own research as well to see what type of illnesses fit the symptoms you are having. You didn't mention what kind of symptoms you have... only that you were 23 when you had your first symptom ~ whatever that was. The battle may seem uphill at the moment but if you persist, you will get to that doctor who recognizes what is happening to you. Then you get the "light bulb" moment. I hope it doesn't take too long for this to happen.
Can you tell us more about your symptoms??? I, for one, am interested in why you are hurting so much and where your pain is originating. You never know, this is a large community and maybe... just maybe... others here will click with you and your symptoms and can give you that glimmer of hope and the light at the end of the tunnel.
I do hope you will continue to post and tell us more about what is going on with you and we will support you the best way we can. In the meantime, try to get yourself comfortable and de-stressed; that exacerbates pain. Relaxation techniques can be most helpful, too. Heating pads work for some while ice packs help others or a combination of the two. Eating a healthy diet and no booze or smoking also. That may sound corny but you'd be surprised at how many people with debilitating illnesses drink and or smoke. Mild stretching works for some people while others take a slow walk... anything to kind of decompress.
Blessings and peace to you in your world with hugs, I look forward to learning more about you and what you are doing to help you cope.
Ok, you have gotten quite a bit of advice here. My thoughts are you need to see a rheumatologist & get a definate diagnosis first of all. Have you ever had an MRI of your back to see what is really going on in there? That would be a good starting place. If you spine looks ok, then you may have fibro, but it needs to be diagnosed first, & a rheumatologist will do this for you. You must be positive for at least 12 trigger points on your body. That just means they are swollen & sore. My personal opinion is that narcotics are not the answer for fibromyalgia. As some of the others have said a good diet, & supplements are the first step. The second is KEEP MOVING. Even if you don't feel like it. I have had fibro all my life, & exercise, a good diet, & a good nights sleep is the most important factors. Sometimes just getting a diagnosis helps to put your mind at ease. I worked all my adult life with fibromyalgia without any medications.
It's the other diseaes I have that finally forced me to stop working(after my 3 boys were raised) & go on disability. A rheumatologist will most likely put you on a low dose of an antidepressant to take at bedtime to help you to get into the REM sleep stage. You do not need narcotics! What you need is a good stretching exercise program. Yoga is very good, & you can get books & CD at the library to learn these. This is a low impact way of stretching & exercising. A good warm bath or shower & rubbing the knots out also helps. I used to go to a chiropractor also. There are ones that specailize in fibromyalgia. It isn't all cracking of bones anymore. They actually do massage therapy, heat, & adjusting of the spine & neck. You can go to WebMD & find all kinds of info on fibromyalgia, & they also have a forum where you can occasionly talk to a doctor that puts in input too. You need to do some research on this disease, but please get to a rheumatologist, & get a proper diagnosis first. Even a chiro if you haven't been to one does xrays of your back the first time. Accupunture may also help, but the other things are more important. Educate yourself first & foremost, & try to stay away from narcotics for pain. If you start on them now, you will build a tolerance to your dose after a time, & have to keep having the dose increased until you are not wanting to do anything. Exercise is very important even if you don't feel like it. You are still young, & I hate to see you starting on a road of destruction at your age...
I had undiagnosed Fibromyalgia for years too, until one bright doctor tested my trigger points and pronounced that I had Fibromyalgia! Now that you know, perhaps it's best to ask for a referral to a Rheumatologist. They may be willing to prescribe pain meds. Another alternative would be to ask to be referred to a Pain Management Clinic. Such a clinic recommended pain pills for my husband, who also has Fibro. I saw a progressively thinking doctor who knew that Methadone can also be used to treat chronic pain. I have been on 10 mg. of Methadone every six hours for the past ten years. Also, I take Tramadol (Ultram), two 50 mg. tablets every six hours. There's something about this combination that works beautifully for me. And, unlike other opioids, I have not had to increase the dosage of the Methodone. Tramadol is not an opioid, so perhaps you can find a doctor to prescribe this.
Also, I take Elavil (an antidepressant), 50 mg., for the aches of Fibromyalgia. I take it at bedtime and it also helps me to go to sleep.
Before I began to experience significant pain I was working between my treadmill
almost daily and I included total gym and stretches. I take vitamins daily and try to take care of my health. It began with spinal stenosis I had surgery then my pain worsened about 6 weeks later. I was told there most be more then one thing going on with me. My doctor said I had myofacial pain syndrom or fibro. I have been taking 30mg morphineSR 4x day for over a year and off and on placed on oxycodone 5mg 2-4x day. My fingers, hands, arms hurt worse and my fingers hurt the worse and my fingers are swelling. I will wake up at 2-3am screaming from the pain. The doctors... clinic said there was nothing more they could do for me and I am about to loss my job of 6 years. I finally got FMLA which allows me to miss 6 days a month but I have lost over $3000 in wages due to chronic pain. I told my doctor the morphine is not working therefore they want to put me on Methadone or take me off my pain medication, the doctor stated,"I guess pain meds don't work." . I pay out of pocket for massages even though my insurance would pay for it with a referral but my PCP would not refer and I go for acupuncture. I have tried cymbalta but had a bad reaction and can not take effexor. I now have HBP too. I asked my doctor to switch me but he WILL NOT.. I did try oxycotine once (someone I know gave it to me to try) 20mg and I found it lasted longer for me and worked. I am so tired of not sleeping, being in pain and dealing with doctors who will not listen to us. Any suggestions??? I don't know what part of my body hurts worse on some days.
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