Neurontin for pain

To MT in pain [2008-07-28]
Have you tried Paxil, Celexa, or Lexapro? They're suppose to elevate your pain threshold....Elavil is suppose to do the same thing. Ihappy! :) Can you take Ambien to counteract the Cymbalta?

Pain clinic [2008-02-19]
Well I chickened out on the ESI but got occipital nerve blocks. I am very sensitive to the steroids plus they were going to do it at T1 which is right below my surgical incision. I am dizzy today but maybe it will calm it down. They want to do more but I am afraid I won't have an immune system left. I wish I could find the right med that I could tolerate, cannot take Cymbalta, Lyrica or nortriptyline. The Neurontin gives me nausea. Any ideas would be appreciated. Also if any of you have cervical problems what type of pillow do you use? Thanks again.

? Thoracic Outlet Syndrome, ? Neurontin [2008-01-11]
At one time it was thought that I had a left-sided thoracic outlet syndrome. Comes to find out, I have a left ulnar neuropathy. My pain originated in the upper part of my left arm andI had a lot of pain in my elbow. This pain then went down the outside of my arm to my little finger and ring finger Also, my little finger and the outside of my ring finger were numb but painful. (yup, it can happen at once!!) And, cold!! Holy cow, both my hands were cold!!! My left hand was sooo very cold, especially when cleaningsnow off my car or ice off the windshield. Other symptoms I had/have aredecreased hand grip in left handand muscle wasting. Has your doc prescribed Neurontin or Lyrica? Neurontinhas helped me tremendously. Mary, I rememberthe way I was treated...here I could walk OK, didnThe person who brought itall together for me was my neurologist...he believed me. He said that the symptoms I was experiencing was normalfor a person with my diagnosis, and, thankfully, he wrote thisin my consult record. Iare twolinks that might be of some help.http://www.neurologyarticles.com/ There might be some really good info on the emedicine: http://www.emedicine.com/neuro/index.shtml#neuromuscular Here are good thougths going your way Isure hope the doctor will be able to find theproper treatment. Boy, enough is enough, eh? Let us know how you make out on Monday.

Have you tried Neurontin, or could it be [2008-01-11]
thoracic outlet syndrome? At one time it was thought that I had a left-sided thoracic outlet syndrome. Comes to find out, I have a left ulnar neuropathy. My pain originated in the upper part of my left arm andI had a lot of pain in my elbow. This pain then went down the outside of my arm to my little finger and ring finger Also, my little finger and the outside of my ring finger were numb but painful. (yup, it can happen at once!!) And, cold!! Holy cow, both my hands were cold!!! My left hand was sooo very cold, especially when cleaningsnow off my car or ice off the windshield. Other symptoms I had/have aredecreased hand grip in left handand muscle wasting. Has your doc prescribed Neurontin or Lyrica? Neurontinhas helped me tremendously. Mary, I rememberthe way I was treated...here I could walk OK, didnThe person who brought itall together for me was my neurologist...he believed me. He said that the symptoms I was experiencing was normalfor a person with my diagnosis, and, thankfully, he wrote thisin my consult record. Iare twolinks that might be of some help.http://www.neurologyarticles.com/ There might be some really good info on the emedicine: http://www.emedicine.com/neuro/index.shtml#neuromuscular Here are good thougths going your way Isure hope the doctor will be able to find theproper treatment. Boy, enough is enough, eh? Let us know how you make out on Monday.

ongoing skull pain [2008-01-10]
Well had an EMG and showed C8 nerve pinched, horrible pain everywhere. Also said cold hands. HA. Are anyone elses hands always cold from fibro or whatever? I think I might have a brachioplexy, horrible pulling pain from skull down to shoulder. With fibro do your arms hurt around your elbows? These doctors are driving me crazy. Seeing another neurosurgeon Monday. Have C5-6 foraminal stenosis they wonIn 2002 had C3-6 laminotomy. I cannot go on like this, affecting my job. Cannot get ESI as too much scar tissue. Don't know what to do anymore.Any ideas?

Neurontin [2008-01-09]
I take 600 mg in the morn, 300 in afternoon, and another 600 at night. I find it works quite well. I use this and Ultram fora left ulnar neuropathy andsevere DDD.

Neurontin [2008-01-09]
Thanks.

Neurontin for pain [2008-01-08]
Hi, Anyone take Neurontin with success for the nerve pain? Thanks.

Information on statin drug -induced pain [2007-11-28]
See link below.

Still another pain clinic -anyone with steroid injections? [2007-11-03]
I posted about going to a pain clinic and when I mentioned fibromyalgia, the physician looked at me like I had 2 heads. I said, you don’t believe in that diagnosis - at which time he said lots of people come in saying they have pain. Good way of skirting the question. To make long story short, am not returning to him. When I told him rib pain he kept saying chest pain- somehow or nother I associated chest pain with an MI. Anyway, yesterday returned to a previous pain clinic I went to about 2 years ago (should have returned there in the first place) but had moved- long story short again- told them about my diagnosis (hey I do not make up the diagnosis, rheumatologist told me I had) and now they are planning on steroid injections into the cartilage around the ribs. Was trying to say possibly chondrochondritis - hey I believe that is the same diagnosis I mentioned to my primary care physician about oh 4 months ago maybe and he gave it not another thought. The clinic wants to do MRI first (looking for other causes as in something worse) but I told them yesterday pain really all over- ribs worse- but hands, elbows, feet, legs. The pain is every day- sometimes horrific- sometimes just there. Told my aunt last night person should not have to live every day with pain. Got the injections set up for the 12th of this month. I am hoping at least to get some relief in the rib section- person at clinic told me to increase Tramadol to 50 mg 3 times a day (had been taking once a day- told that was not enough). Will post later and keeping those fingers crossed that this helps me.

Pain still [2007-10-27]
I feel for you. I am going through the same thing. Lyrica does not have very good ratings for fibro even though they think it does. It causes more swelling which causes more pain. Have you had a recent DEXA scan? I think you need to find a rheumatologist that also treats fibro or a good naturopath. They look at the underlying cause, i.e. Epstein-Barr virus, Candida, etc. My pain doctor gave me methadone like it was candy-no thanks. Best of luck to you. Like you, I don't have much faith in the doctors any more. It's all about money.

head pain and pain clinic [2007-10-27]
Geez, the doctor gave me methadone. I am terrified of taking this. I revisited another surgeon who is going to repeat a CAT scan of my neck and a SPECT scan to see if anything lights up. He feels I could have fibro as it develops after trauma especially after some surgeries. At least he listened. He wasn't too keen on the methadone, thought I should stick with other pain meds. I am so sick of meds that don't work or make me sick. I am extremely chemically sensitive. I also have a red rash on my occiput where the pain is. I hope my brains aren't trying to push out. Geez. I have just about had it. A naturopath here wants me to try her cold laser therapy on my skull but don't know much about it and don't have the money to try it out. Anyway, I'm still at square one. I am sure this is all fibro as I have the trigger points according to the chart - have 14 out of 16. I also have very big knuckles, another sign of fibro as the calcium collects there. Well, good luck to all.

Annabanana on pain site [2007-10-25]
Went to pain clinic like I was talking about and when telling the physician my diagnosis could read in his face he did not believe in a fibro diagnosis. I even told him - you doncares.

Head pain [2007-10-20]
I have not found anything that helps yet. Take valium and pain pills, cannot take Neurontin. I think it is either fibromyalgia or occipital neuralgia or both. I can hardly function too, cannot drive far because of the dizziness. My last MRI of my neck showed DDD and bone spurs. Nortriptyline at night helped but caused me heart palpitations. More magnesium helps.

Head and rib pain [2007-10-20]
Hi, Well my neurologist has dumped me-cannot find anything else to give me. I am so depressed. My ribs hurt too. I think it is all muscle related fibro pain. I had 1 hour of massage and also an hour of accupuncture with no relief. My sternocleidomastoid muscles feel like they are tearing behind my ears, cannot wear my glasses any more. I feel like I am about ready to have a heart attack from the muscle spasms over the ribs. I am going to increase my magnesium intake and see if that helps. My latest MRI of my neck does not look good either although the neuro says it is normal. The doctorsall make me sick. I had a posterior cervical laminectomy in 2002 for spinal stenosis, then the C2 nerve ablation in 2004 for the headaches. Now I have unbearable head pain. Wish I could go to the Bonati Laser Spine Clinic in Florida. I think they could help me. I am worried I have arachnoiditis. Dona friend with occipital neuralgia and trigeminal neuralgia that takes Avinza and Neurontin and got relief of her pain but I cannot take Neurontin. I do not know the answer any more.

Is it chest pain that hurts [2007-10-06]
when you press on it? Is it more of the ribs, or possibly between the ribs? Or is it at the arch under the sternum? Does pain increase with lifting your arms? With exercise? Or how would you describe the chest pain?

ER visit and pain clinic [2007-10-01]
Had to call an ambulance yesterday because of the skull pain. Had a blood glucose of 140 in the ambulance and Afib. Went to ER, they gave me fentanyl which did nothing. Left a message for neurologist, no one has called. I am having debilitating migraines and skull pain. Have not yet started Lyrica because of the s/e. Have been to the pain clinic. They offer occipital nerve blocks, nortriptyline, Neurontin, Lyrica and breakthrough meds. It just depends on what works. Some things work for some of us and others donand also collostin. Dr. Paul St. Amand's book says it all. Hope this helps.

Appt for pain clinic [2007-09-29]
I have posted here several times about the fibromyalgia that seems to always be there, sometimes horrific, sometimes just subtle pain. I finally decided to approach going to a pain clinic for this being as everyone else I have gone to or been referred to has done absolutely nothing to help me with dealing with the pain. I do not care about being on anything that is addictive, all I want is to have the edge off the pain so I can continue working and living a halfway pain free life. Is there anyone here who has been to a pain clinic, what type of treatment did you receive and what has seemed to be effective in keeping the pain somewhat at bay? I have found most of the medical field sorely lacking in response to pain, even when you carry this diagnosis. Right now I have ibuprofen and do not care to take lots of that because it can be harmful to kidneys if overdone. Thanks for any information you might be able to share.

pain clinics [2007-09-29]
I transcribe for a pain clinic. You should find the help you need there, but you should be patient because it may not come with just the first visit. Different things work for different people. Don These things are necessary to weed out drug-seekers, and what better place for a drug-seeker to get strong meds than a pain clinic? About five years ago I transcribed for a nurse practitioner who specializes in fibromyalgia. From that transcription experience, I learned that your best hope for lasting pain relief from fibromyalgia is regularstretching and exercise. The patients who really improved learned to exercise through the pain, then the pain went away. Good luck!

I feel your pain but honestly, I [2007-09-29]
do not tell anyone about my problems. Not even my husband. I had a thyroid biopsy the other year and did not tell him because he gets all bent out of shape and thinks I have cancer all the time, so I had my DILyou have cancer, I know you do. So instead of being supportive, he made me feel worse.) Of course, it was not cancer, but this is the reason I do not tell him when I have a problem. I wait until I know the results of any test before I tell him. Sorry to go off on a different subject and don

P.S. I've been dealing with pain for over 32 years. [2007-09-29]
It was never diagnosed and I gave up and just live with it after spending mucho bucks on specialists, so you're not the only one. I don't say much since it has become a normal part of my life.

Pain and fatigue [2007-09-19]
I've had fibro for the past 15 years - i contracted rheumatic fever and fifth's disease at the same time - and the pain just never left I do sleep a lot - and work very little. My life is very stressful right now - i'm moving soon and hopefully the stress will be somewhat relieved. I spent over 10 years taking prednisone and penicillin that an internist prescribed. I finally got with a pain management specialist and they put me on oxycontin - which I got off of this past May - the had kept upping my dose - i am now maintained on Norco (because I have diabetes) and Soma. The combination of these 2 seem to help with the pain - but the fatigue - haven't found anything that helps with that. I got lost in the Wal-mart parking lot Friday night and a man came up to me and asked me if I needed to go to the hospital - I told him I was looking for my car and was headed back up to the hospital when I found it (I had gone to pick up some things for a friend who was a patient) - it wasn't so funny then - but now I can laugh at the situation.

pain treatment sm [2007-09-18]
There is a spray on called Bio Freeze, got it from PT, I don ortho guy said he was a surgeon, take Tylenol and Tylenol PM, fingers are getting deformed and my back feels like someone took a baseball bat to it and it's broken in half. I find microwave heat pads which you can buy at mall or online, contains rice and sometimes scented stuff like lavendar, but brings relief when I lie flat. Understand the pain and its interference with our profession, it's horrible. I even tried a Nada chair which is on line (it is not a chair, just a belt) and pulls your spine forward, hooks over the knees, helps sometimes. Have tried it all, find no compassion from the docs, sometimes it is extremely depressing to feel this way. Take the extra D, calcium, Actonel, no help there!

Where is most of your pain? [2007-09-13]
I had in extremities, arms, legs especially bad. Now I am having, as I said, the severe pain in the ribs. Seems like when going to a physician you can say what is going on- like I told mine ribs and he x-rays the hands?? I have never been diagnosed with arthritis, x-rays do not show, labs don’t either but have appointment with nephrologist this morning (have renal cysts) and going to ask please can he give assistance as to what to do next, can he recommend something, someone. I feel like I am grasping at straws trying to get the help I need.

severe head pain with fibro [2007-09-10]
OUCH, my head is killing me, like giant snakes trying to push out of my skull. The rheumatologist gave me Lyrica. Has anyone taken this? No one can figure out what is wrong with me. Have had C3-6 laminectomy (2002) and C2 nerve root ablation (2004). One doc says fibro, the other occipital neuralgia and the other degenerative disk disease and straight neck. I am about ready for the ER. Also having eczema on face. Just shoot me please!

rhizotomy [2008-08-17]
I am so sorry you went through so much. I hope you are doing a lot better. They cannot do ESI's on me as I have had a laminectomy and they are afraid the needle will hit something. Now I also have a questionable sacral spinal cyst. I am praying this was misdiagnosed. My legs hurt terribly as do my low back. I get no pain relief from anything and have constant muscles spasms in my head and neck on top of this lumbar spine condition. Am getting another MRI this week to see if that cyst is there.

Crippling RA [2008-08-16]
Hi there, I just found this board. I know there was one a few years ago but happy to see that it is back. I have crippling RA and secondary conditions... active, reacitve, daily pain, all of the above. Many deformities which started in about the 8th year of the disease. It is now my 13th year. I finally scheduled an appt for disability on Monday coming. I just did not want to give in but I am not able to keep a job. I am on medical leave from one inhouse joband work at home part-time on another, just wondering when will they tell me I am too unpredictable and cancel the contract.I really hope that doesn I just went through that with the last job. I have been hospitalized 6 times this year. Both hands are crippled with z-deformities, boutonnere I just type around it but obviously much slower thanI need to be for this job and definitely slower than the employer would like me to be. I made the mistake of thinking since this adesk job, then a disabled person should be able to do it. If anyone else is going through the things I have mentioned above, please feel free to talk to me about any of it. I would love to hear from you and just hope we can support each other and/or come up with ways to still stay employed. blessings to all going through the variouspainful conditions. MT in GA RA 13 years andsecondary conditions withsicca symptoms, bone on bone hips, etc.

I have had RA for about 13 years too. In the first few years....sm [2008-08-16]
before the new drugs came out, I had a very hard time with flares, awful pain and deformity. Prednisone slowed it down, but when I went on Humira it was a miracle, no more flares, no pain, no further deformity.

Hi.... [2008-08-16]
Bless your heart. I want to meet others with this disease but at the same time I hate to think about another human being suffering in pain like this. I never knew people could hurt this much from a disease. The flares are like a toothache in your joints, red, hot swollen joints. I get the fevers and chills with it too. It has never been in remission. No, the Humira didn't work for me. Enbrel did but everything is short-lived with me. The MTX kept sending my liver enzymes up to high until finally they stopped trying to give it to me. I got worse on the Remicade. The Orencia worked for about 6 months, long enough for me to go back to work inhouse and now I am out on medical leave. I have been in transcription for a little more than 6 years but with this condition it is off and on work. I have been hospitalized 6 times this year. I have had fluid removed from my lungs twice, so now when I swell, they keep me and give me IV Lasix, my electrolytes are usually out of balance, so they fix that too. I go home feeling better but 3 weeks later it is the same old song and dance. I have an appt. Tuesday. They are talking about starting Rituxan but worried about my kidneys. We will see. Since the Humira worked for you, are you able to type okay? Can you do a full-time position? You can also e-mail me at the yahoo address if I am asking questions that are too personal. Nice to meet you. Take care.

I hope you have better luck than I did. sm [2008-08-13]
I had 3 ESIs and 3 facet injections. None worked one iota. I worked at the hosp. so the pain doc was nice and did the 3rd facet. The next thing was a foraminotomy, which barely touched my 90YO neck at age 35. The neurosurgeon required a myelogram. Having typed them, it didn't dawn on me how big a mistake I'd made until I got a dural tear from one of my beloved Radiologists. He was just sick about it, as were the others in the group, as they said it happens about once a year. I ended up with chemical meningitis, which required three blood patches! It was awful! A year later I had a fusion and my vocal cord was paralyzed! 2 Medrol Dosepaks did nothing. About 2-3 years later my voice returned to normal. It sounded like I'd been inhaling helium. The good side of this is that this is all in the past tense. I still get the paresthesias in one arm, but compared to what I once had that seems like nothing. Either way, there's no perfect answer. I hope your situation works out well.

also remember [2008-08-13]
That chronic pain patients often discover a nice surprise at the end of their dosing: that the pain is often times gone. I donout there, but it is certainly often the case. Maybe you never did get my msg. Either way, please do keep us posted on things.

Sounds perfect! Thanks so much! [2008-08-12]
I started something similar today, but I like your I know its just day 1 but I Then the minute I But when I lay flat in bed, forget about it. Its not my baseline pain, its withdrawal, the squirrely electric-like sensations, stomach cramping, chills, Hey wait! Maybe its menopause and a hot flash, too! Wouldn It was so neat, but I had no idea what it was. Thought it was a stick paper dispenser or something, and nearly razored my finger tip off when I said, ooh, what Sending a hidden razor blade in an unidentified thingamajiggie to a blonde is NOT a good idea! LOL. Thanks again! I'll keep you posted, if you would like.

Yes.... [2008-08-12]
...please let us know how you're doing. You might want to take one of the whole pills right before bedtime, to help you through the night. You also might find that you may need to take a few more days each time before you reduce. So you may need to stay 3-4 days at a total of 3 pills a day....then reduce one of the whole pills by half a pill....so you're on 2-1/2 pills a day for a few days....and so on. If you put it on paper, you may be able to see and be able to follow it a bit better. Also, your PCP may be a bit more inclined to help you than that pain M.D. Your PCP knows you more, and if you ask for help in tapering, she/he may give it in a more compassionate way. Also, you can ask your PCP for the 5/500s or the 250 mg, once you are close to the end of your 750s, and those will split easier, and you will be getting a much reduced dose. In this way, you can take several weeks/month(s). to taper down and down....until your body doesn't feel addictated. I'm rambling now, but you probably understand what I'm saying. Hints for pain: Take deep breaths, and slow stretching exercises. I sometimes do the BodyFlex exercises, which is a deep breath and a stretch, and that gets oxygen to your muscles, which oxygenates them, and helps your overall endurance, and helps pain reduce, as well. I guess yoga and Pilates would, too. And meditation, if you think that would help.

Thank you so much. I will check it out! [2008-08-11]
Right - there is substance abuse, but, as I

Thanks so much for sharing. I'm sorry you had to [2008-08-11]
go thru it, too, with antidepressants. Thank God I said no to them, or I Some sites say they are a miracle, and I could use Suboxone for a week or two and go thru a completely painless withdrawal, and other sites say that Suboxone is more addictive than the Vicodin, and then you have to withdraw from that! I know when I quit smoking about 15 years ago, I think, I started using the nicotine patch. I felt horrible, so sick, and then read that the patch just had this go on and on and on. I pulled the patch off and quit cold turkey, and only suffered terribly for a few days. I don Thanks so much. Tomorrow is my big day, by the way. The start of the end of a bad thing and beginning of good things! Now off to find some info.

Anyone know a taper schedule for Vicodin? [2008-08-10]
I know, no medical advice formally being asked, but does anyone know any taper schedule? They used to be on the internet, but now when I search, I keep getting directed to horrible sites that sell Lortab and get emails of spam now for Vicodin, etc. Been on Vicodin for 10 years, trigeminal neuralgia, chronic pain syndrome, and have been on four Vicodin ES a day the whole time. I am sick to death of going to this skanky pain clinic in our county. Scum of the earth there, people dealing in the waiting room and parking lot, and never see a doctor, just NPs who think they are doctors, and just hand out scrips. They never go over anything on ourconditions, tho they are supposed to - they just hand out scrips. They have me on so many drugs by now, which is part of the game - you have to take the crap they hand out or you get kicked out of the program. I am supposed to be on Ambien-CR, Xanax, Esgic, and the Vicodin ES. My primary said that combo would kill me, and I know it would. The insurance company even said it would kill me, so I never ever even filled the Xanax. Xanax 2 mg four times a day, by the way. Can you imagine? They told me I had to be on an antidepressant, a sleeping med and then a pain med. I told them I would no way take an antidepressant, as never was depressed. So they said I had to have anxiety then. At any rate, I had a urine test the other day for compliance, and I tested negative for Ambien and Xanax, if you can believe this. I never take Xanax, but I take Ambien-CR every single night. This ignorant NP also said I was in trouble as I tested positive for barbiturates, which I had to explain to her was the Esgic (they want me to take 4 a day, which is considered a lethal amount). I only take it prn and happened to need it the day before I got tested, and thisunqualified NPtold me I tested NEGATIVE for Vicodin, as my urine showed hydromorphone and NO hydrocodone. Well, Vicodin metabolite IS hydromorphone, and I had to try to explain that. She said I must have a huge -- stash -- of Vicodin at home, as my urine showed nothing about Vicodin. I thought I was on Candid Camera or something. I am really polite and never lost my temper, though I would have been justified. She was so frustrated with me that she told me I had to find another doctor. I then lost my temper and told her what I felt of this candy doctor, who is never around, as that is all he is, and how ignorant she is. Bottom line, I got 100 Vicodin from her when I swore Iincorrect medical testing interpretation, i.e. stupidity. I asked her for a weaning schedule, and she DIDN So, I want to get off of it, but not sure of a wean schedule. Thanks for listening. I donI think II hope someone understands, and please, please, please don I am just heartbroken over this and so scared, as I went thru severe withdrawal about 8 years ago, literally doubled over on the floor with stomach pains and vomiting. I have never been on more than 4 a day. Its so weird, but I get so sick, like watching junkies on a heroin movie. The withdrawalwas another time long ago when I got humiliated picking up a scrip from a pharmacy in my new town. They were snickering and laughing about how some moms supplemented their income by selling Vikes. I had no idea what they were talking about til later, and then I cried and cried, flushed the pills, and died for about a week. At any rate, I am so scared of being sick like that, don Thanks for any help. Thanks for listening. My DH, by the way, is beyond furious and wants me to go to a lawyer over this, the NP not knowing that hydromorphone is hydrocodone metabolized in the urine, claiming I was on barbiturates, when she was the one who prescribes Esgic and didnThis witch NP also told me she would give me a good referral at another pain clinic, not to worry, but I do NOT want to go thru this anymore. Sorry for carrying on so long.

I've only tapered off antidepressants [2008-08-10]
before, and I did it on my own. The most important thing I needed to know was whether the tablets could be broken (or capsules opened). I guess it depends at least partly on whether it's a time-release formula or not. The ones I was on were okay to divide, so I'd just split them so that I would take about 3/4 of a dose for a week or 2, then 1/2 dose for a week or 2, then 1/4 dose for a week or 2, and then continue on a crumb for 3 weeks or so. This is what I had to do with Effexor, which is just awful to get off from (brain shocks). Actually I also had brain shocks from getting off Prozac, but I didn't realize it was the Prozac and hadn't done much of a taper with that one. So that time I was afraid the brain shocks meant I had MS or a brain tumor or something. I've transcribed pain clinic notes before (in NC), and they were nothing like what you're describing. The scariest thing I remember was that they had a lot of patients on that one narcotic that's a replacement for something illegal - heroin? I can't even think what it is now, maybe methadone? The one that I think was often dosed as an orange liquid? Anyway, they used this drug a lot for pain whether the patient had ever been addicted to the illegal drug or not. I would have been mortified to pick up a Rx for it. I'm sorry you've gone through this. Sounds like quite a racket (sp?) they have going there.

To MT in pain [2008-07-28]
Have you tried Paxil, Celexa, or Lexapro? They're suppose to elevate your pain threshold....Elavil is suppose to do the same thing. Ihappy! :) Can you take Ambien to counteract the Cymbalta?

First off, Hello everyone.........sm [2008-07-23]
this is my first time on this board. I am 43 yrs old, suffer from fibromyalgia. I have had this pain for about 1-1/2 yrs but got officially diagnosed in September of 2007. I have been on narcotics, tried different types of meds like Lyrica (BAD side effects) Prozac, wellbutrin, neurontin (made me swell), Lortab, Xanax, Flexeril. Well, the Lortab and Flexeril helped at first, but Lortab does nothing for me, so my doc put me on Percocet 10 mg and I am still on Xanax. I was also started on Cymbalta (2nd day).....She told me to take it at bedtime, but I am WIDE AWAKE but she says this will wear off after a while. I had to quit a good paying job with health benefits because the stress of that job was making me have a nervous breakdown, I was hurting 3 x more than the normal pain and the company, well that is another story for another time. I have gone thru testing for lupus, MS, RA, etc.....I just got another job as an employee but still wondering IF I should take the insurance, which I probably will not as it is WAY too expensive. I am not even sure I will last at this job as an employee because shift work just does not work for me anymore. I am so tired of always being in pain, having to pop pills and feel like a druggie and I am so afraid I will get hooked. Well, I know this is long and if you read up to this point, thank you...I have started the application process for disability because this disorder has me in the poor house as I am unable to keep a job because of this. I know they may not approve me, OR if they do, it may take years.... Anyone with FBM, what do you do, what meds are you on, how do you cope without feeling like you just want to cry and scream and control the mood swings? I also take magnesium, fish oil, B vitamins.... I push myself just to sit at this computer to start working. The company I was hired with, they let me tell them what hours I preferred and of course, I chose hours to start later in the mornings (mid mornings). Upon awakening, it takes me a good 3 hours just to get myself together, I do my stretches, I take my meds, take a bath/shower, get dressed, fix hair, and put my makeup on. I try to do everything before all of this happened so that I can at least feel like my old normal self....but is is so hard. Please excuse the typos, I am now just getting groggy and will take advantage of that and hit the sack.

Crissy, I just posted about FBM..sm [2008-07-23]
I also forgot in my original post, i have been on Omega fatty acids for a long time, but it does not seem to be helping me. My doctor and the rheumatologist I saw, well, he told me that my doctor was doign a great job of treating me and there was really nothing he would do differently. My medication regimen for this awful thing: Cymbalta 60 mg once a day Percocet 10/650 mg 1 twice daily. Xanax 1 mg 3 times a day Lortab and Ultram for breakthru pain. I take other vitamins and I also take magnesium. As you can see, I am a walking dealer for a drug addict and i HATE IT....but I hate the pain more. Stretching exercises seem to help a GREAT deal and I do them a few times during the day. I also have a myspace page and I have met WONDERFUL people who suffer from FBM, joined support groups online as there aren Everyday, we send each others messages, we chat on IM, some of use even exchanged phone numbers. These gals are wonderful and some have other conditions in addition to FBM and they are the strongest women I know. If you would like to find out more about the groups I belong to, please feel free to email me. Good luck with everything. I know what you are going through.

Ribose [2008-06-16]
Does Ribose help with the muscle pain? Thanks.

Thank you. Please see message. [2008-05-19]
Thanks very much for your post and your prayers. My main intent in posting was to inform people that this disease can be diagnosed in adults, even after having a relatively healthy childhood and adulthood. In all the medical notes I've ever done, I have never seen a newly-diagnosed case of CF in an adult. My second intent, admittedly, was that I was/am very angry about the way this DNA testing was conducted, and I wanted to warn others out there that this could happen to them, as well, and if they're uninsured when the testing is done, they're not going to be able to get health insurance if the test is positive. I did contact several attorneys over this matter. They were either uninterested in my case or were already being treated by one of the physicians in this large monopoly of specialists that spans several states. I also contacted HIPAA, but they didn't feel this fell under their purview. The last thing I did was to contact the State Board of Medical Examiners (with a copy to the State Medical Society). I received a reply from them just a few days ago wherein they informed me that they had opened a file and are planning to investigate the case. About a month ago, I applied for Social Security Disability benefits (as well as SSI benefits, since my income is now so low). I hear that 75% to 80% of these cases are denied on first try, so I'm not holding my breath (no pun intended). The SSI program is a needs-based program. It's basically welfare, and I almost requested they not file that application because I felt so ashamed. I had never been on welfare in my entire life. However, I DO need the medical insurance desperately, and even if I were approved for and began receiving Social Security disability benefits TODAY, I wouldn't be eligible for Medicare for roughly 2-1/2 YEARS, whereas medical assistance is immediate with SSI. I'm still working as much as I can (which isn't much). I'm hoping my employer doesn't fire me because my job is the only source of pride I have remaining in my life these days. As far as your adult-diagnosed ADD, I'm very sorry to hear that. Are you taking medication, and if so, is it helping at all?? I hope you can get treatment and that the treatment helps. For a while, I thought I might have the same thing, but then I realized all the drugs I'm taking would be enough to cloud up the brain of a genius, so I'm pretty sure that's not what is causing my inability to concentrate, etc. In your case, it seems that youAHA moment, where you can look back at your life and realize that this is a disease you've probably had all along, but, as you said, medical technology is advancing, and we're learning new things every day. Certainly, nobody knew of or much about ADHD when you were a child. I never had an AHA! moment with this. About a dozen years ago, I had my gallbladder removed because of stones. I had a hysterectomy due to a prolapsed uterus in 2001. Inormal folks. In fact, before I became ill in 2006, it was probably close to a DECADE since I even had a normal cold! In July of 2007, I apparently had pneumonia during one of my hospitalizations, but I didnproblem or even feeling as if I had a cold. The first really bad cold I felt was during my hospitalization in August of 2007, and, ironically, that was my best oxygen hospitalization out of all of them; I needed very little, if all, oxygen during my hospital stay. The cold, however, was the worst I had had in my entire life. I even complained to the nurse about it (which I never ordinarily would have done with a normal cold). That was the same hospitalization when the DNA test was taken. I was fortunate enough to visit National Jewish Medical Center (about 80 miles from my home). My doctor is the director of the Adult Cystic Fibrosis Program there. He said I have TWO disease-causing mutations. He told me that my pain will eventually stop once my pancreas totally destroyed and replaced with scar tissue. (I've read that people with chronic pancreas have an increased chance of developing pancreatic or other digestive cancers, and my mother died from colon cancer.) He said, instead, lung disease is probably what will kill me. X-rays showed bronchiectasis (which they said is secondary to cystic fibrosis), and my PFTs were abnormal, but my pulmonary problems aren't the main thing with me right now. In fact, although I'm noticing an increase in sputum production lately and the tendency to become short-winded more, this part of the disease seems to be something that is coming on so slowly that I barely realize it, for which I'm very thankful. I think, other than my loss of pride as a human being, the main thing that saddens me is all the children and babies that have died from this disease, and I feel very guilty if I sound like I'm complaining. I'm NOT complaining (except for the way the doctors acted), because I feel so fortunate to have been on this planet for all these years that if I die today, I will have at least had an opportunity to live my life that so many babies and children weren't fortunate enough to have. As I first wrote, though, please keep my experience in mind, in case someone you know and love suddenly develops digestive problems that canidiopathic and become chronic, and tell them to be certain to have insurance before agreeing to or requesting a DNA test. If they have cystic fibrosis, the CF Foundation offers to assist in the payment of premiums if someone caninsurance wouldn't pay. Again, thank you for your prayer, and I will send out one to the Big Guy for you, as well. I truly hope you can find a medication that will help with your ADD. (By the way, I donjust ADD; it's a disease that can really mess up your life!)

Not interested or understanding [2008-05-19]
I don't have MS, but I certainly can relate to being left and with no one being interested in learning about the disease process. In 2001, I had a hysterectomy, cystocele and rectocele repair and bladder suspension, and my boyfriend of six years decided that three days before my surgery would be a good time to leave. I think it was the emotional loss (as well as the monetary loss since he contributed to the bills) that hurt the most. Fortunately for me, I had two great friends and an aunt who had keys to my house and would stop over all the time to see if I was okay. (I felt okay, but stupid little things, like removing an ice cube tray from the freezer, were difficult in the beginning.) So I can relate to being abandoned and the hurt it can create on so many different levels. I I live with my daughter now, 2,500 miles from my home, where I was born and raised. (Ironically, she takes Provigil herself!) Now that I She has called me lazy during some of her angrier moments, which hurts more than I can express in words and just adds to my own sense of worthlessness. She Every now and then, I do mention something in the form of a what my body joke (for example, when goofy or weird things happen with my body, I look to see if these are components of CF, and nine times out of ten, they are.) It however, I Maybe holding someone you love at arm's length and acting aloof is their way of preventing the emotional pain they might feel if they truly accepted the fact that you have a serious disease. (Or, as in the case of my boyfriend, they're just plain creeps!) My daughter and I did have a discussion regarding my death just last week. (At this point, IMe, since I think it Many posters on this board are married and not alone, but for those who are alone with no life insurance, please read my P.S. post above.) I personally am grateful for boards like this because sometimes, it's the only outlet we have to just vent or to ask questions. I know there are CF and Pancreatitis boards on the internet. I've learned quite a few things from reading posts on these boards, and I've found that finding a community of people with the same disease is very helpful because they DO understand the disease process and what you're going through. I wish good luck and the very best of health to both of you. I will keep you in my prayers.

Need help with fibromyalgia. (sm) [2008-05-08]
Has anybody found a doctor that's helped much with fibromyalgia? Any good new updates on treatments or help to relieve the pain? Thanks.

MS anyone [2008-04-23]
I am new to the site. I have been a Transcriptionist for about 20+ years, but the last 10 I have been home, just doing some clinic typing for radiology or whatever. My husband left us (my 3 kids and I) about 7 weeks ago and now I have to go back to work full time. I was diagnosed with MS in 2007, probably have had for several years prior, but diagnosis takesa while. My question is this, does anybody else have MS and what do you do during your day to help you,. I am kind of afraid of sitting too much, so I figure I will have to get up frequently. Anyway, just looking for support I guess. I see quite a few people with FM and Iknow that MS and FM mimmic each other a lot.I am wondering if maybe a specific chair helps with nerve or muscle pain? Thanksin advance for the input.

I don't have MS, but I wanted. . sm [2008-04-23]
to say how sorry I am for what you must be going through! I don't have MS, but I have chronic fatigue and/or FM. I have been taking Provigil, and it has changed my life. It gives me the energy I need just to get through the day. It is very expensive though. This year our insurance will cover half of it (Thank goodness!). I don't know of any chair that helps with nerve or muscle pain. I just make sure that my work area is set up so that I don't have to do long reaching (i.e. for heavy books)and I take breaks when I can and stretch. I have my monitor set up on about 4 books so that it is right in front of my face so that I don't have to bend my neck at all to look at the monitor. Have you ever read the Spoons Theory? If you haven't read it, it is very interesting! I don't know how to make a link, but if you just Google it, it is easy to find. Good luck to you and your kids!

FMS - flareup - help! [2008-03-28]
OMG - I I was bedridden for 6 weeks. I am now finally back to work full-time, but, that is a push for me. I'm on meds, but, it only takes the edge off - I'm still in pain (down my whole right side). After work - I sleep or watch TV. I don I have no energy. My house gets cleaned MAYBE once a week or less. I just can I I feel like my life is wasting away with this disease. Am I the only one who feels this way?

Coconut oil - No I don't sell it :-) but want to share my experience (sm) [2008-03-21]
I have been ill for years with hepatitis C (though no symptoms from that), chronic fatigue, all-over body aches, borderline thyroid, overweight, acne, etc. I have started using coconut oil - there is tons about it on the internet - and in just one week I am feeling more energetic, my body pain is greatly improved, and my skin has significantly cleared up and my skin is far less dry. I have been taking about 2 tablespoons a day with different foods and using some of it directly on my skin. I bought it at a Whole Foods store here locally and paid $6 for the first jar which lasted me a week. It has helped me so much already that I wanted to share this info in case anyone else wants to try it. It is worth a try, right?? Best wishes to everyone.

Thank you, Janie. [2008-03-20]
Wow! I couldnprofessionals, at least the ones that seem to hold a monopoly on their respective practices in my town. I sure hope you have a different doctor now!! I will definitely investigate saline infusions! Thanks for the tip. As I I can also give credit where it's due, and after yesterday, believe me, it's DUE! I had an appointment with National Jewish Medical Center in Denver yesterday. This appointment lasted six hours, but I didn The entire experience moved like a well-oiled machine. They made my local hospital look like a butcher shop. As noted, I HAVE done a lot of research into this (especially pancreatitis), but it In my case, my lung disease is mild. It The doctor yesterday told me that eventually (probably in a few years) my pancreas pain will go away because my pancreas is basically cannibalizing itself. Once it finishes destroying itself, although Idead pancreas, I won I probably will develop diabetes, though. Unless I develop pancreatic cancer (or cancer somewhere else in my GI tract), though, he told me that my lung disease will definitely be the cause of my death. They gave me so much stuff yesterday, including a very nice book (hard-bound, no less), Now That I Have CF. The entire book is devoted to adult-diagnosed cystic fibrosis. National Jewish is THE place to go for this disease. This is their expertise. I had previously felt as if Iwolves and had lost all trust and respect for the medical professionals as a whole. My experience yesterday has restored my faith. They gave me prescriptions for a box (5) of Fentanyl patches, more Vicodin for the pain that isnhospital worthy, more Xanax for the incredible anxiety I have (I awake in the middle of the night, panick stricken, almost every night.) They re-began me on paroxetine at double the dose I had previously been on, feeling it might work better for me. They gave me an Acapella device to use daily that helps to get rid of the mucus. (I was surprised to find that the use of this device, as they directed, is exhausting! Now I understand why patients with cystic fibrosis are so tired as a result of the treatment they need to undergo.) They gave me an entire box of Creon sample bottles (pancreatic enzyme). They gave me samples of Qvar, Pulmicort, and two ProAir HFAs. They advised me to apply for Social Security disability, and I met with the social worker for a very long time. She also wants me to have my CICP (Colorado Indigent Care Program) case re-rated because she feels I'm paying too much now that my income has decreased so much. The only snag is that if I need to be admitted, they admit through a university hospital near them, again almost 80 miles from where I live. As it was, we had to rent a car yesterday to get there, so I don That A few weeks ago when i had a hospital-worthy attack, the two patches previously given to me by the hospital (which I saved) helped very much to get me through the attack. Only drawback is they take a while to get into your system, but once they do, they last for three days. So maybe these new patches will help prevent another hospital admission, as the others did. Iofficially in the CF register, and I've very eagerly agreed to participate in any research projects where they may need my help. I don

Adult-diagnosed cystic fibrosis [2008-03-16]
Hello, everyone. I For those of you who, like me, though, DID NOT know, cystic fibrosis can be diagnosed in an adult. I just turned 55, and two years ago (02/01/2006), out of NOWHERE, in the middle of the night I became very ill. I chalked it up to a stomach bug, but I became sicker and sicker during the day. Finally, 21 hours later, when my pain was simply unbearable, I began having difficulty with my breathingand I KNEW I wasn't capable of driving myself to the ER, I finally called 911, and the ambulance came. I was immediately diagnosed with pancreatitis. The only risk factor profile I was able to fit into was that my triglycerides were elevated. I spent eight scary days in the hospital. My daughter bought a one-way ticket from Colorado to Pennsylvania where I had lived all my life, and we packed up me, the pets and everything else we could fit into the van and drove back to Colorado. I've been living with her since. Since my move out here, I've been hospitalized six more times (total of seven), again for pancreatitis. Finally, on my sixth hospitalization, the physicians seemed to finally be taking my case seriously. Maybe it had something to do with the 6.6-cm phlegmon that was found on the head of my pancreas (which represents approximately half the size of my ENTIRE pancreas), just two months after one of their associates basically regarded me as a drug seeker, told me she didn For whatever reason, they finally began to explore the real reason for what they finally conceded was my chronic pancreatitis. They finally requested the records from my initial hospitalization back in PA. They came clean and said that even though my triglycerides had been previously elevated (they were normal during this hospitalization), they would have needed to have been ten times those values in order to truly be considered a cause of pancreatitis. Without any prior opportunity to ask questions, without any informed consent and without the words cystic fibrosis ever being spoken in my presence, they decided to have diagnostic DNA testing performed on me to see if I might have cystic fibrosis. This test turned out to be positive. Out of the blue, I received these devastating results one month after the report was received by the ordering pulmonologist (who is unknown to me), by my PCP in an undated three-sentence letter. Coincidentally, according to the report, the test was ordered on September 1, the results were faxed (and mailed) to the pulmonologist on September 6, and I was discharged on September 6. I admit to being incredibly angry at the way I have been treated in this regard, considering I was uninsured at this time, having been forced to cancel my employer-provided health insurance when the premium increased to literally 50% of my gross income. Before canceling my insurance, though, I did call Blue Cross/Shield, who basically laughed at me and said I wouldndiscriminate. (Ironically, if the GI who dismissed me as a drug seeker had taken my case seriously, I might still have insurance today because, from what I have read, the Cystic Fibrosis Foundation stresses the importance of continuity of insurance and will even help with the payment of the premiums, if necessary.) However, I The root cause may be cystic fibrosis. If you or anyone you know feel this could apply, please discuss it with your physician. If your physician feels CF is a possibility, BE SURE YOU HAVE HEALTH INSURANCE BEFORE THIS TESTING IS PERFORMED because once youofficially diagnosed, you can I just turned 55 four days ago, and I finally have been able to save enough money to rent a car (mine was repossessed because I could no longer afford to pay the payments due to being sick and declining income) and have made an appointment with the nearest Cystic Fibrosis Clinic in Denver (approximately 80 miles away). From everything I have read, cystic fibrosis is an always fatal disease, and my symptoms are getting worse and worse. I believe this disease is beginning to affect more GI organs because of the changes in pain and other new symptoms I have been having. I did have some pulmonary problems throughout all this and required oxygen during each of my hospitalizations, except, ironically, the one where this mystery pulmonologist ordered the secret DNA test. (One time on discharge, I was ordered to have home oxygen, which I fought because I felt fine and chalked it up to being in bed in the hospital for 11 days. I challenged the nurse to a walk down the hall to prove it to her, only to discover that my pulse ox was 67%, which quickly shut me up!) However, my primary symptoms were with my pancreas. I have come to terms with the fact that my life is probably going to end soon, and if anything, I feel guilty for complaining when I've lived to be 55 years of age and think about all the children and babies who either die of this disease before they can walk or live their lives struggling on a daily basis to fight this disease. If I had been given a choice in the matter, I would not have permitted the testing until I could possibly find a way of obtaining health insurance from SOMEONE (maybe move to a more insurance friendly state or find another means of securing insurance). However, I wasn As I said, I never heard the words cystic fibrosis uttered in my presence. (I found the testing laboratoryInformed Consent for DNA Testing form, apparently required by them. I never saw or signed this form or any other form resembling it. I required a PICC line during this particular hospitalization, and I still have the informed consent with each item checked off that I was informed about, and this paper contains my signature, consistent with my recollection of the events as they occurred.) I don't want to see any other patient whose profile fits mine go through the devastation of receiving a letter out of the blue informing them they have a fatal disease. I want patients to be able to be proactive in their care with their physicians, as I was unable to be. They KNEW I had an intense interest in participating in my own care; I requested copies of every lab test, every imaging study and every chest x-ray from my hospital bed when those results were available because I wanted to be kept fully informed of my condition. Please deposit this information into your memory bank in case it may someday apply to you or someone you love. CYSTIC FIBROSIS IS NOT JUST A DISEASE OF CHILDREN AND BABIES, AND IT ISN (In fact, the original name for cystic fibrosis was cystic fibrosis of the pancreas.)