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Oh, this was a thoracic - forgot to mention [2008-01-29]
NM

thoracic outlet syndrome [2008-01-12]
Yes I have those same symptoms, cold hands, wasting right trapezius muscle. I will try the Neurontin again. Thanks so much.

? 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.

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.


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All the tame, but only when you go to bed? [2008-08-12]
I am running search mode in my brain, trying to remember something similar. I used to do all transcription for a brilliant allergist/immunologist out of the Northeast. He was top of his game. I know this is probably been done, but have you ruled out the invisible bed bugs and mites? I know, but its a huge problem and most often invisible til its a disaster. I am allergic to the world, but don I won That I believe points to liver issues, but its being caused by meds. I am allergic to ibuprofen, but that allergy took a long time building to full anaphylaxis, with just these itching episodes at night. And I had not taken the Motrin before bed, rather hours earlier. It had no correlation with dose, just going to sleep. Are you on any meds at all? Generic versus name brands? I can only take name brand meds, as generics use completely different fillers, and some drugs can be 90% filler to make the actual pill. My doctor and I had to work for years to find out which fillers I cannot tolerate, and its basically any, and I know to stay away from generics, particularly a brand Watson. The fillers can cause intense itching allergies, while if you look the drug up on a site, itching will never be listed as a side effect, but it is the side effect from the filler allergy. Hope this makes sense and might help. There is also some other syndrome that exhibits itself with itching during sleep, and I cannot remember it now for the life of me. If I think of it, I Of course, if you itch all the time, I But again, when one is alllergic to the world since childhood, one gets good at identifying those pesky triggers. Good luck to you!

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.

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.

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.

high ANA [2008-05-02]
As I was recently told I had an elevated ANA....I have done some research and an elevated ANA can occur in people that are healthy individuals, if your family has a history of autoimmune disorder, if you are female and of older age...among the different diagnoses...Scleroderma, RArthritis, Sjogrens, Hashimotos thyroiditis, hepatitis, some viral infections, type 1 diabetes, addison's disease, certain medications (Aldomet, Enbrel, Remicade), polymositis, Raynauds syndrome, vitamin b12 deficiency, idopathic thrombocytopenia, fibromyalgia, and anemia. There are so many different reasons an ANA can be elevated. Also, an ANA can be a false positive in some otherwise healthy individuals if the ANA is positive and no symptoms are evident.

Got it at a health food store [2008-02-23]
but not 100% but better than the acute pain- I do alright at night (thank goodness) when I can lie completely flat but working 8 hrs a day sometimes is harsh on my ribs. I went back to the pain clinic and only got 4 days of pain with the last thoracic injection, when they said well lets try again- told them no, just give me something for acute pain- most everything else I have tried is really not doing any good. Have a new internist's appointment the first of next month. I wish something or someone could help me! Pain every day is no fun.

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.

Fibromyalgia folks also and Mary, got the email about injection [2008-02-14]
I went back to pain clinic the first of this week- the other thoracic lasted for, ahh, 4 days- and the PA said well we should repeat and I said no, have turned down all hard medications before and now I said want Lortab for really bad pain - they monitor and I only take 1/2 tablet if needed. Now having said this, let me tell you what I found out about a health food store item called Ribose- I started taking nearly 2 weeks ago now and so far so good- read an article saying how much it had helped person's fibro- I gave it a chance. I will continue to stay on it as long as out of that excruciating pain.

Why are you worrying? [2008-01-21]
Am having an thoracic ESI done Monday after next and have had 2 previous ones but not thoracic- may have been cervical- going to pain clinic and they are NO big deal, in fact the first 1 I had done thought the injections still to be done and the physician was finished. The first gave loads of pain, the second not but another physician said not getting the right spot and ordered thoracic ones instead. After the injections I was given some heat/massage therapy for awhile and things really felt good. I do not think you have a reason to worry at all. Let us know how things turn out, ok?

It was not a problem in any way. [2008-01-21]
I could have worked the same day but I have found out supposed to rest for 24 hours? Hmmm, don’t think I was told that at first but have them done on my off day (Monday) so not a problem here. At the pain clinic they gave me maybe Versed, fentanyl combination ? but nothing absolutely to make you the least bit drowsy, not for me at least. I guess that is for the nerves, if you have some. I did not know the first ones done, that will tell you something, the second I felt more what I call pressure with it. I have thoracic coming up and no qualms about having that 1 done. Piece of cake. If something can give me relief, I am all for it and hopefully you can get some. Let us know afterwards, ok?

thoracic outlet syndrome [2008-01-12]
Yes I have those same symptoms, cold hands, wasting right trapezius muscle. I will try the Neurontin again. Thanks so much.

? 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.

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

Hmmm, maybe a gluten-free diet would help you, too. [2007-12-29]
Diseases Linked to Celiac Disease People with celiac disease tend to have other autoimmune diseases as well, including: Dermatitis herpetiformis. Thyroid disease. Systemic lupus erythematosus. Type 1 diabetes. Liver disease. Collagen vascular disease. Rheumatoid arthritis. Sjogren's syndrome. The connection between celiac and these diseases may be genetic. http://healthlink.mcw.edu/article/956622658.html

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.

brain MRI [2007-10-03]
No, they did a CAT scan of my brain thinking I might have had an aneurysm. My eyes are very light sensitive, flashing lights and black specks in the sun. It was negative. Have not heard a thing from my neurologist. I am so afraid of having MS but at my age it is doubtful. Horrifying skull pain, occipttal neuralgia and very tight muscles, headache 24/7. Cannot tolerate Neurontin, nortriptyline. This pain is next in line to trigeminal neuralgia.

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.

I saw the reply about the good info you gave [2007-08-21]
and get this- I was watching a talk show this morning with wife complaining about the fact her husband in chronic, constant pain and yet no one wanted to give him anything for pain. The husband died but wife (along with others on the panel being quizzed) was stating the fact of his syndrome which they later determined him to have and I could not believe when the moderator asked the wife - well, are you a doctor- wife said no and the moderator then said- well let the doctor talked about this! Unbelievable in the fact that most of us MTs KNOW just how wrong doctors can be sometimes. I remember going up against the physician 1 time asking for Megace for now deceased husband, he was losing weight, not eating and I KNEW Megace would increase appetite - I had typed on AIDs patients as well as pts with cancer. Doctors do not know it all and I am more than glad you were able to suggest something this person with the pain/low energy might try. Good for you!

Fibromyalgia and CFS sm [2007-08-20]
I was under the impression that fibromyalgia and chronic fatigue syndrome diagnoses were made pretty much when other causes for the symptoms had been ruled out. Is this still true?? Well, I doknow there is a trigger point test for fibro, but to this untrained person, it sounds like that may be what the problem is - one or the other. Then again, I haven't been studying up on them for a couple of years so maybe new tests have come out or something.

I have the pins and needles feeling in [2007-06-02]
my feet and legs - doctor put me on neurontin and i have not had any problems since.

I'm not sure it's the ciprofloxacin that [2007-05-18]
your doctor was talking about. When I googled ciprofloxacin and fibromyalgia, the articles that came up all seemed to talk about how the infection can get into connective tissues, blood and organs, and be resistant to the medications, but it is supposedly the infection causing the pain. They discuss longer courses of treatment. You might want to look further into this. Maybe you can get a link from this. Otherwise do the Google I did. [RTF] IDENTIFICATION AND TREATMENT OF CHRONIC INFECTIONS IN CFIDS AND ... File Format: Rich Text Format - View as HTML Fibromyalgia Syndrome (FMS) is characterized by muscle pain and tenderness ... cycles of doxycycline (200-300 mg/day), ciprofloxacin or Cipro (1500 mg/day), ... www.immed.org/Fatigue%20Illness/reports/FMSurvivorNewslett00.rtf - Similar pages

fibro [2007-04-02]
my antidepressant is Zoloft 100 mg at bedtime. The rheumatologist put me on NSAIDs (Relafen 1500 mg) in January and although some think that the steroids do not help I found that they helped a great deal - especially the pain I was feeling over my hip area when I laid on my side or rolled over, etc - while it did not make the pain go completely away - the tenderness I felt diminished a great deal - I tend to think that everyone responds to different medications, treatment, etc - it seems that the treatment plan for each person differs like the symptoms differ from person to person. He also put me on Neurontin back in February to help with the tingling feeling I was having in my feet and hands -which has helped. I'm still in the beginning stages of fibro - so I'm sure my symptoms will change/intensify as time goes by. I have, however,felt great the last 3-4 days thank goodness - hope it last for a while (I know wishful thinking! - but hey a girl's gotta dream LOL!)...I too have cut down on my sugar and caffeine. Do you have muscle spasms? Lyrica was something he said I could try if the Neurontin didn't work for me - but the Lyrica is rather expensive and not the preferred drug on my insurance right now - so I opted for the Neurontin it so far so good - and I've not gained the weight that some people did - so maybe I'll be okay for a while on this med. Well I need to go sign on to work - I hope you and all the other fibro sufferers have a great week!!!



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