Thanks for the support!

This site is great, so glad I found you all.

Best to you,

Jodi

My good pain management doc (whom I saw for two years) believed that people needed to have their pain managed. He finally had to retire because even though he kept meticulous records, and everything was completely legal (I even had to do regular urine tests), he still got too much heat. I now see one of his colleagues. The area I live in is one of the worst for being able to get your pain managed. This was the place where, a few years back, housewives were breaking into pharmacies, and secretaries were stealing prescription pads - all for oxy. Now it is almost impossible to find someone who will manage your pain.

My pain medication, for the last three years, has been a hydrocodone compound made at a wonderful local pharmacy. Before that, it was oxy. I ended up being allergic to it, and thank goodness because whenever I saw other doctors for other issues, I had all kinds of problems. One doctor yelled that I was taking oxy and said that I was “drugged up enough,” to his staff and the waiting room, since the door was wide open. I didn’t go back. Another doctor blamed the oxy for my problem, even though it wasn’t the cause. It was his way of saying that he would not treat me because I took it.

And Walgreens: During the first six months of illness, my PCP prescribed Vicodin while I was seeing specialists to find out what was wrong with me. Near the end of the year, I saw my psychiatrist who showed me a report from Walgreens. It was a printout of the Vicodin prescriptions that they had filled for me, and they sent it to him because they were concerned that I was taking it. He was concerned, but not by the report – he was worried because I wasn’t getting my pain adequately managed. At the time, I was driving 4 hours each direction to Chicago once a month, for pain management. I was getting Ultram and Skelaxin. Whoopie. He referred me to my great pain management doc that I was fortunate to see for two years.

One day, a couple of months into the illness, I was at my 2nd appointment with a sports medicine specialist. He was prescribing PT in his PT center and asked how it was helping. I said that it was making my old cervical spine injury feel a little better, but it wasn't related to the full-body pain that I was having. I told him how the physical therapists really didn't know what to do when I told them about the full-body pain. So, finally I said "my neck hurts" and then they knew what to do.

Then he just got mad and said that I was not interested in working on the problem, I was only interested in getting drugs (I had not mentioned any medicines at this point, so it was bizarre). I just lost it. I started yelling at him. I had HAD it with all the specialists and no one being able to figure out what I had. I told him that all I knew was that I was doing great, then got pneumonia and recovered with all these symptoms. And after seeing all these specialists and trying to find out what was wrong and get help, he has the nerve to tell me I'm doctor shopping! Yes, I am! For a doctor who will do his job! After that, I went to Mayo for diagnosis.

Isn't it interesting that when Dr. Kevorkian was practicing, everyone was saying that assisted suicide was not the answer - that better pain management was what we needed - then he was thrown in jail and SLAM! No more negotiations. No more talk of pain management.

And doesn't it make you angry when you hear about yet ANOTHER celebrity blaming the drug instead of taking responsibility? John Stamos and Ambien is the latest, I think. Take the medication as prescribed. And quit acting out and blaming the drug. They don’t care about the harm they are doing to those of us who are taking the meds the way we are supposed to, who rely on these meds in order to survive. Celebs behaving badly and blaming the prescription drugs. Hey, THANKS A LOT, GUYS...

I, too, used to be against taking anything other than nutritional supplements. I am a computer geek, but in the late 80's when I was living in L.A., I went to massage school. I became licensed and certified. I also sold Chinese herb supplements. I got acupuncture once a week, saw a healer a couple of times a year and got cranial-sacral after my car accident (my seatbelt didn't catch me and I smashed through the windshield).

Now, I don't like taking the meds but they are here to help me and I'm so relieved that I am able to get them because without them, I would be bedridden. I was on the Duragesic patch for awhile and I have to say that I didn't think it helped me - well, like you bobbysgirl, it helped for 1.5 days, then...YOW. It's not very good at distributing meds. In order to get it to stick, I put alcohol on the spot, let it dry, then applied. Because adhesives make me break out, I also had to apply a layer of steroid nose spray (Nasacort AQ), then applied the patch. I would never be able to do that again because, just as my neurologist was telling me it looks like I have the early stages of MS, I realized that I have Lyme. Steroids with Lyme is a definite no-no. Ugh, I just think back to all the steroids I got over the last few years. That’s really how I discovered the Lyme, once and for all. After four months of cortisone injections last year, all my symptoms got so much worse (neurological, musculoskeletal).

I have also been diagnosed with fibro, lupus (all the symptoms but not a positive test), CFS, and a bazillion other things. Started with full-body pain, nerve pain, killer fatigue, migraines, Raynaud's, IBS, rapidly deteriorating vision, burning pain, zinging nerve pain with bright lights and loud noises. Lost my gallbladder. Had a seizure and abnormal brain scan. Knee surgery, where my surgeon sat down and asked me, afterward "How on earth did you get all of this arthritis? I have never seen anything like it?" This was all in the first year. But this last year was the worst, full of neurological and musculoskeletal problems, and 100+ weight loss for no reason. I look like a corpse. I am freezing in 90 degree weather in the hot sun.

CJ, what you are describing is what I used to call “head zing.” When I went off Methadone (I only took it for two months), I had that and it lasted about six months. When I went off Effexor, it lasted a year.

I am allergic to many antidepressants, mostly the SSRIs, even SAMe. If it works for me, I am allergic. I loved Cymbalta, it helped with pain and depression, but it made me shop (and before that, I hated shopping. On Cymbalta, I filled my room with clearance clothing for the whole family, my mom, my daughter’s friends…). Lexapro and Celexa made me break out, but they worked great. SAMe works great and starts working within a couple of days (for me, anyway). Serzone did nothing, all the tri’s made me so sleepy, it was ridiculous. Psychotropic drugs just scare me now. I have terrible depression, but there’s not much left to try. Vagas nerve stimulation is too scary for me. I will just have to wait and see. For anxiety, it’s klonopin, which makes me sleepy so I don’t take it much since my killer fatigue makes me sleepy enough.

CJ – Robaxin. Does it help with muscle - or other – pain? It helps with your stomach?

For pain, I took oxy with Actiq for breakthrough pain. It was okay, but I needed the Actiq a lot (the problem with that is tooth decay). Ultram is a water pill. I think of muscle relaxants as assistants to the primary pain medication. Methadone worked great but I had too many bad side effects.

Hydrocodone works the best for me so far. I don’t need help with breakthrough pain. They can make it both immediate and extended release.

For sleep, I took Ambien for years after my sleep study (I was born an insomniac). I tried Provigil but it didn’t help at all.

blugoldqueen – if the head pain doc was in the same clinic as the doc who wrote you the oxy prescription, he was afraid to go against the word of the other doc. Have you seen anyone at the pain management clinic yet? The problem is that they make a lot of money doing the injections, so they almost don’t give you a choice. I was in one of those clinics after my good pain doc retired, and the pressure was such that they were removing me from my pain meds while insisting on the injections. I left as soon as I could. Currently, I am back in a pain clinic that does injections, but my doc does not push them. I told him they did not work for me and he said that it’s my body and I have every right to choose what treatment I want and need. Other docs in the clinic don’t feel that way, and he thinks that’s wrong.

Bobbysgirl – do you remember what was bad with Neurontin? I take a LOT of it, so I would be interested.

Here’s my list:

Hydrocodone compound for full-body, neuropathic and musculoskeletal pain.

Neurontin, 900mg 3x/day for neuropathic pain.

Xyrem for sleep management. It’s indicated for narcolepsy, but many articles have been written on the use of Xyrem for fibromyalgia, since it helps with nighttime pain, and the pain upon awakening (google it). It is a Godsend. You can only get it from one pharmacy in the US – the shipping is free. The doctor has to join the Xyrem Success Program – they just have to complete a short form and fax it in, after they’ve read the material. The patient has to read the material and fax a form, also. It’s all worth it. The doc can fax a prescription, 6 months worth at a time, even – they don’t have to do just one a month. Sorry, this has just been so helpful to me!!!

Ampicillin and minocycline for Lyme.

Adderall for adult ADD. It also helps with fatigue. I don’t take much, due to worsening of neuro symptoms.

Reglan, for nighttime GERD issues and motility.

Zantac, for GERD.

Thyroid and T3:T4 thyroid (since I was making reverse thyroid)

Zofran, for nausea, as needed.

Zomig, when I have a migraine (if any of you take anything you think is better, please, please let me know!).

M.O.M. for motility issues due to autonomic neuropathy.

Many nutritional supplements.

Sorry about the length of this. Thanks to all of you for your help and candidness.

-L

Neurontin has been associated with an increased risk of suicide/suicidal ideation. HOWEVER, some might suggest that the population of people for whom it is prescribed (people who hurt like hell 24/7) might be more inclined to be desperately depressed, so who knows? I think I also felt sort of in a dream-like state--a sense of unrealness at times. I was taking 600mg 3x day. I have just started back with it today, due to post shingles pain, diabetic neuropathy, and lyme-related stuff. I am going to ask my doc to get insurance to pay for lyrica, though. I tried it awhile back and liked it much better.

Will write more later. Getting a migraine. Sorry!!!

Just wanted to clarify the electricity shock that I experience when I posted about it. I appreciate erleichda that you addressed it and that you for your explanation, however, it isn't related to my medication whatsoever.

This symptom actually began in the very early stages of my illness and I still have no idea what it is or if it is related to something more specific that FM. When it occured it was before I actually took any medication of any kind and was still having other mysterious symptoms which I have learned a great deal more about over time.

However, I'm still at a loss for why I experience this horrible symptom from time to time and what it actually is. My doctor and neurologist both shrug and have no explanation. When I describe it to my MS friends they all say they experience something very similar and have actually called it Lhermitte's sign and is very common for people with MS.

I still don't know if I indeed do have MS but am anxious to receive word from UC San Francisco if they will take me on as a patient to do the testing necessary since Reno has admitted that they have no idea how to test beyond MRI's and Spinal taps and recommended UC San Francisco.

So if anyone else has had experience with this kind of electrical shock that basically moves throughout the head and is followed up with a horrible intense burst of ringing in the ears, please post your experience.

... Also ..

Wow, Neurontin. Gotta chime in again and say what a wacky drug that is. At least for me. When I took it I was on 900 mg 3x a day before I finally told my doc that I didn't want to be on it any more. He started me on 300mg 3x a day then progressively over a month increased the dosage. That entire month I would sleep walk, sit up and have conversations during my sleep (my wife described it), and would be so loopy my wife didn't feel comfortable having the kids in the house while I was still on it. I still feel like it may have done permanent damage since I still experience from time to time these kinds of sleep anomolies.

Many people with lyme disease experience funny "electric" sorts of sensations. I'm sure you probably already checked into that...Before starting my antibiotic treatment for 7 year old misdiagnosed ld, I had similiar sensations in various parts, including my neck and skull, each limb, etc. Of course, they would move about and were not at all predictable. The worst of the skull sensation turned out to be shingles behind my eyes (optic nerve?) and was miserable. I could never have imagined shingles, of all things, was what that creepy feeling was.

Anyway, I hope you'll look again at the lyme connection. We thought my condition was MS or lupus, but is actually LD. My aunt died recently with RA and MS, and I felt like she looked. Imagine, all that pain for all those years and some doxycicline has made my pain so much better.....

Many people with lyme disease experience funny "electric" sorts of sensations. I'm sure you probably already checked into that...Before starting my antibiotic treatment for 7 year old misdiagnosed ld, I had similiar sensations in various parts, including my neck and skull, each limb, etc. Of course, they would move about and were not at all predictable. The worst of the skull sensation turned out to be shingles behind my eyes (optic nerve?) and was miserable. I could never have imagined shingles, of all things, was what that creepy feeling was.

Anyway, I hope you'll look again at the lyme connection. We thought my condition was MS or lupus, but is actually LD. My aunt died recently with RA and MS, and I felt like she looked. Imagine, all that pain for all those years and some doxycicline has made my pain so much better.....Oh, and I am certain my FM diagnosis is correct, too. But it is secondary to untreated LD.

Thanks very much for the info. You know I do find it amazing the amount of testimony given in here about people that have FM and discovered they have LD. When I read up on it I was also amazed by the corresponding symptoms that I have and how it doesn't show up in an MRI and that identifying it is so difficult makes me wonder if I do have LD also or exclusively.

About 4 years ago I actually found a tick on my back which are rare for the area of town that we live in so I was very surprised. It was a reasonably sized one which indicated that I had it for a good amount of time. I immediately went to the doctor but apparently no ring appeared.

I asked my current doctor if he thought I had LD and he didn't think so, but I still wonder about it.

Thanks for the reply and I appreciate your information.

Hi, I live in the North East and I am also having hard time trying to find a doctor who will prescribe naroctics of any kind, I have that same neck, headache and shoulder pain, they DN me with TMJ about a year ago and they said thats whats causing that pain.I have tried using the over the counter patches , hot/cold patches they seem to take the edge off of it of course I have found noting that takes the pain away. Try using a heating pad, or sitting in the tub with relaxing music with extremely hot water as hot as you can handle it.Does you jaw hurt or your face through any of this?Does the light or noise make it worse? If you have jaw or face pain with this you may want to get a mouth guard and see if that helps at all, that has helped mine quite a bit I dont wake up with as many headaches anymore, I have always had migraines too but they discovered last year it wasnt a migraine after trying every med there was for migraines even the med you take everyday before you get one , didnt work.I grind my teeth when I am stressed and that caused the same symtoms as migrain. I hope this helps a little.

One last thing is anone experiencing tingling n there hands and feet. If I sit for 10 minutes my feet are cold and then become tingling, if I use my hands too loh same affect, is this part of the FM?

Sorry just another note, I have been having some serious pelvic psin, and lower abdomain pain, the doctors cheked me for basically everything, the rhumetalagist even said that wasnt part of the FM , he said it was bursitis and gave me cortizone shots in both hips , it hurts more now than it did before I went in the and I didnt think that was possible. When I have those headache pains I end up with stabbing pain in my chest, I have been seen at the hospital where my blood pressure was 70/ 52, they cheched to make sure I wasnt having stroke or heart attack and when all that came back fine they sent me home, with a shot of moriphine{actually 2 shots} and he gave me ativan which I thought was a life saver, but cant get a doctor to prescribe itDoes corizone make the FM worse or is there anthr reason it hurts so bad? Tank you all for being here. I love that I can read and get some answers to some of the things I am feeeling, I am Blesssed by all of you. Lori

Cymbalta 60 mg a day, helps with my depression and anxiety and neuralgia/neuropathy in my legs

Buspar 10 mg three times a day- For my anxiety issues

Flexeril- once a day, usually at night right before bed

Nexium 40 mg once a day, helps with stomach acids from all the drugs and my GERD

Coumadin 10 mg a night- I get blood clots

Vicodin ES 7.5- as needed for break through pain

Percocet- as needed for really bad break through pain

Propanolol 10 mg as needed to convert heart rate from v-tach to normal sinus rhythm

Bisprolol 10 mg- twice a day for v-tach arhythmia issues

Nasacort AQ- for my all year long allergies

Lunesta 4mg- for my chronic life long insomnia

Valium 10 mg- usually at night I take a whole one to help me sleep and during the day 5 mg to just help me cope

Crestor 10- high cholesterol

Most of the meds I take that make me drowsy I just go ahead and take them at night so I can try to sleep. It used to scare me I took so many things together like that, that I would not wake up. But now, I say well If I do wake up great if I dont well hope I lived my life the way I was supposed to.

Debbi