# drugs of choice?



## LoriAnn (Jan 31, 2002)

I haven't spoke to other FM'ers for a long time. I've been taking elivil for 10 years, for a long time it really helped, but no so anymore. I can't increase the dose above 25mg because my stomach can't handle it, even with daily doses of nexium. I need a new option, and I have no idea what anyone is trying now, whats hot and whats not. Any advice?


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## LoriAnn (Jan 31, 2002)

I made so many posts I thought I should move this back up before it disappeared off the page


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## Mio (Dec 19, 1999)

Hi Lori Ann,have you spoked to your doctor about new medicin? Iï¿½m on Tramadol (other brand names are Ultram and Nobligan) which is a painkiller (not anti inflammatory medicin). I think it works very well for me and I know that research has shown that Tramadol is working well on FMS patients./Mio


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## Feisty (Aug 14, 2000)

Lori,I'm only using Skelaxin ( a mild muscle relaxer) and I finally got my Doc to give me something to help me get some sleep---Clonazepam. Due to the discovery a year ago that I have Barrett's Esophagitis, I am not suppose to take aspirin or ibuprofen or any anti-inflammatory that's irritating to the stomach. And Extra-Strength Tylenol does nothing for me and that's the only one I'm suppose to use.No more anti-depressants for me. After my close to suicide experience brought on by anti-depressants 2 years ago, I refuse to try any more of them and beleive me, I've tried a lot of different ones.My Doc still wants me to get back into a regular exercise program and a healthy diet. Wants me to swim laps, but I have to find a warm pool -- some place where they keep the water at 86* or warmer. Otherwise my muscles will just tense up too much and it will be of no benefit for me. And then there's the money issue. Right now, we are really in a bind and there will be no extra's until hubbie can find another job. In the mean time, in the last year, I've been housecleaning for others and it's taken it's toll on my body, big time, but I can't give it up until things stabilize around here. No wonder I'm so tense and crabby all the time.Take care.Karen


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## LoriAnn (Jan 31, 2002)

Hi Mio,I have heard of ultram, is it hard on the stomach? I don't have much luck with painkillers for that reason, then there is the addictive issue, my sister is addicted to demerol,(her doctors answer to FM)Can you tell me more about it?I have talked to a couple of Doctors, my obgyn wanted me off the elivil and on prozac, my GP said no way, elivil is still the most effective treatment for FM,and there is no evidence that prozac improves FM at all. My Gp may not be very effective but he does listen, and he tries (and I didn't like the attitude of the obgyn toward FM) so I kicked the elivil(after nearly 10 years on it) and went solo for a while, it didn't help my stomach and I couldn't handle the insomnia or pain so I'm back on the elivil and back where I started. I really need to try something else, and I'm sure that my doc will try something new if I ask, but first I need to figure out what to try.Karen - I'm soooooo sorry to hear some of your troubles, I know exactly how you feel, had to do housework for others too last year, I would come home in agony at night and cry myself to sleep. Then I got a job inserting flyers into newspapers at $5.60 an hour, standing in one place and constantly moving my arms, lifting 50lb bundles of newspapers, Friday shifts were 16 to 18 hours long, I was so sick, and because of the IBS I wouldn't eat all day, then I would get sick as soon as I ate when I got home, after 3 shifts Kev said he would rather lose the house than see me go back, I didn't argue. So I started making crafts out of recyclables and selling them at flea markets, it kept us afloat. My dryer is gone, couldn't afford the propane last year, I'm cooking on a hotplate (stove went a year ago) We have to fill the washer with a hose,we sold just about everything we owned just trying to keep the heat on last winter so my house looks pretty bare (no coffee or end tables,sold the microwave, camper had to go too, and a lot of other things, the TV is in the repair shop and my computer just came back from there last week. We were being sued - an incredibly long story at the end of which it appears we won. Rose had another baby, Jillian Marie Hope, (so now I have 2 adorable grandchildren)and she had a beautiful wedding in which she married a jerk.(and I'm being kind)Kevin changed jobs 7 times, through no fault of his own, (taxi & truck driving being what they are) but he just got a job with Microsoft! he only started last wednesday so cross your fingers for us, its a fantastic job but after the year and a half of this mess its hard to get our hopes up. I care most about the benefits. Even though there are material things we need more, Kev & I decided this was the most important, at least for me.What happened to turn your world so upside down, last time we spoke your hubby was off to vacation in Canada, and working, and you sent me pix of your house. I wouldn't want anyone to go through what I have and my heart and prayers are with you.I think I should go back through the old posts, as far back as I can so I can catch up with everyone. I hope things get better for you very soon. It will take months for us to get back on our feet, but we are very slowly getting there, I replaced my microwave & VCR at Christmas, I had to get another monitor and printer before I could get back online(I sold those too)(refused to part with the CPU, the fact that it needed new fans helped in the decision to keep it) it really has been eventful, "that which does not break us makes us stronger" we must all be an incredibly strong bunch of people. I hope things never get so bad Karen that you have to give up your internet, I won't give it up again, there is just so much I am willing to sacrifice, I'll keep cooking on the hotplate and hanging the clothes up to dry if I have to, but now I know what my limits are.Email me, tell me all about it. I'm thinking of you.


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## Susan Purry (Nov 6, 2001)

Hello LoriAnn.I have CFS. I have taken C0-Proxamol for 10 years now (it's a mixture of Paracetamol & Dextropropoxyphene), it's a distalgesic painkiller. It's my faithful friend! I have been able to take it without any problems - no side-effects to speak of other than slight tendency to constipation (which I'm glad of, because I have IBS -D type!), and although I was initially told not to take it for long because I might become dependent, I haven't found that to be the case. I also take Tramadol (Ultram) slow-release. I haven't found it hard on my stomach at all. It is not addictive because it's a synthetic opioid. I used to take ibuprofen (a NSAID) but cannot any more because it hurt my stomach so very much after I took it at high doses 2 years ago for several months. Have you talked to your doctor about amitryptaline (spelling?)? It's an antidepressant that is quite commonly prescribed for pain relief, especially for Fibromyaglia patients. Best wishes,


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## Mio (Dec 19, 1999)

Hi again,I have problem with GERD so medication is a problem for my stomach...I donï¿½t get any problem with Tramadol if I take it with some food. Have you IBS-D or C? Sometimes I can get C, but that only happens if I take more than one tablet a day. And since I have IBD it isnï¿½t a problem if I get C







! My doc is very careful with medication and she told me that Tramadol isnï¿½t addictive, as Susan said itï¿½s a synthetic opioid (morphine)./Mio


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## LoriAnn (Jan 31, 2002)

Hi Susan& MioElivil is amitriptylline...whatever, but I used elivil because I couldn't remember how to spell the other (had to get out me prescription bottle to get the right spelling. It was a godsend 10 years ago and worked very well at a 25mg dose once a day for almost as long, but when that does was no longer helping they tried to raise it and my stomach couldn't take it, even when the added zantac, also tried pantoloc, now I'm on nexium, I can manage the elivil at the 25mg, but can't go any higher. I'm in agony, every hour, but its even worse if I don't take it. Amitryptylline is notorious for causing stomach irritation but it was like a miricle drug for me for a long time, except for occaisional flare ups I lived a normal life until about 2 years ago, now its a nightmare.I have both C&D ibs, C can last 6 to 8 weeks, then something sets me off and I have D of and on for 6 weeks then I'm back to C. Except this last bout, the D has lasted since the end of Nov, I laid on the couch for 2 weeks too sick to move, I couldn't even touch water. Its a lot better now but I wouldn't mind a bit of type C either. I went the ibuprophen way when the elivil started to fail me, but after about 4 weeks that was done, I can't touch the stuff again.Tylonal helps some, but as we all know its more like a bandaid.If it weren't for my stomach I would have access to effective treatments.The ultram sounds like the most common, I've never heard of it in Canada.We are alot slower at approving drugs.Susan, C0-Proxamol sounds interesting, how does it work? Do you take regular doses or just when you need it. I know that with CFS, fatigue is a major symptom but do you sleep a lot or suffer from insomnia which makes you tired. The insomnia & ibs are the worst part of my fm. I ask because I wondered if the C0-proxamol helps you feel more awake or it just deals with pain. If its been around for 10 years, its probably available in Canada.Thanks for the info, it will help when I ask my doctor for a change.


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## Susan Purry (Nov 6, 2001)

Hello again LoriAnn. I'm sorry, I should have remembered that Elavil is amitriptalyine (sp!).







Oh, I get so mixed up with the different names! Sorry also for your stomach troubles - finding a pain medication that works AND is kind on the stomach is very hard isn't it!To answer your questions... As far as I know, Co-Proxamol is just a painkiller - it's not an antidepressant painkiller like Elavil etc.I don't suffer from insomnia (with the caveat that I do get insomnia when depressed - sleep disturbance is a typical symptom of depression). But my sleep is sometimes disrupted (waking early etc) and on those days I am even more tired than usual (I wouldn't have thought that was possible, but apparently there are always new depths of exhaustion just when you think you've reached rock bottom







LOL). I take Remeron (mirtazapine), which is an antidepressant and it really helps with my sleep. It helps me get to sleep, and helps me stay asleep. It also helps with my IBS D. I believe sleep is so important for anybody, and especially important for people with fatiguing illnesses, because lack of sleep or lack of good quality sleep will make even the healthiest person feel pretty rough pretty quickly. Here is some info for you:Tramadol (Ultram): http://opioids.com/tramadol/tramang.html Just a small excerpt from this to introduce you to the article:


> quote:The pharmacology, pharmacokinetics, efficacy, adverse effects, and dosage and administration of tramadol are reviewed. Tramadol is a synthetic analogue of codeine that binds to mu opiate receptors and inhibits norepinephrine and serotonin reuptake. It is rapidly and extensively absorbed after oral doses and is metabolized in the liver. Analgesia begins within one hour and starts to peak in two hours.


I haven't been able to find any online info on the Co-Proxamol so far. The only info I have is from the leaflet inside my prescription box. It says Co-Prox tablets "have been in use for many years worldwide, for the relief of mild to moderate pain... AVOID ALCOHOL... take after meals... some people find it makes them feel drowsy at first".


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## LoriAnn (Jan 31, 2002)

Thanks so much for the info Susan, the info on the antidepressent Remeron is most useful as the biggest reason I stick with the elivil is for the sleep, if remeron comes even close to replacing it I game to try it.The excerpt says that it is a synthetic something of codine, I am seriously allergic to codine, but does synthetic mean a copy without the same properties? I always get confused about the use of that word. As for confusion, I can totally relate,so many drugs to remember and this brain fog has never been this bad, I have to keep going back down to the posts so I can remember what I'm talking about. I can't seem to remember how to spell simple words, its so aggrevating!But at least I keep my sence of humour about it, it is kind of funny sometimes.Oh, how is the remeron on your stomach? How much do you need to take, and has your doctor had to increase your dose over the years to keep it effective? So many questions!Thanks for your help.


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## LoriAnn (Jan 31, 2002)

PS Is there a spell check on this board...when I read over what I wrote BEFORE I post, it looks fine, after I post I see a dozen mistakes.....its frustrating.


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## Susan Purry (Nov 6, 2001)

LoriAnn, it's the Tramadol (Ultram), not the Remeron (mirtazapine) which is the synthetic codeine - just to clarify things for both of us! I don't know the answer to your question about codeine allergy, I'm sorry. Remember that Remeron is an antidepressant, not a painkiller. Also remeber that your doctor is always the best person to ask about any medication. Here is some info on Remeron for you: http://www.nami.org/helpline/remeron.html http://www.medscape.com/druginfo/PEMConsum...eralStatement=N The dose is something your doctor would decide on and s/he may start you on a low dose to start with and gradually increase to the optimum. Usual starting dose is 15mg, usual highest dose is 45mg. I have taken it since December 1999. I have taken different doses at different times according to severity of depression and anxiety symptoms. The Remeron has not affected my stomach at all. The only GI side-effect I can think of is constipation. Of course it has other side-effects, like all medications do. It is sedating, so people usually take it at night. It may leave you with some early morning sedation, but that wears off after a while, and is worse the lower the dose. Best wishes,


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## LoriAnn (Jan 31, 2002)

Thanks for the links Susan, I followed and printed the info for my doctor. I focused on the remerol because I was looking more for a replacement for the elivil, I want to stay away from the pain killers as much as possible. The Remeron sounds very similar to elivil, so it can't hurt to talk to my doctor about it,he admits he knows little about FM, but is willing to check out any info I bring him, and is willing to try my suggestions so long as they don't pose a new threat to me, I'm lucky that way.Thanks again


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## mally (Jan 8, 2002)

Just wanted to mention this:Alot of times people mention how this or that pill causes them stomach irritation.I'm not even sure it depends on the brand as much as that PILLS IN GENERAL can be irritating & dehydrating.On the other hand, Nuprin & Motrin have always been good for me (but that's maybe because they're coated? & thus less irritating?I know that when I take NON-coated Soma (carisoprodol) tablets, they cause me bloating & stomach pain.Finally, I strongly URGE you to AVOID SATURATED FATS, because I personally find they cause the MOST LONG-LASTING PAIN. If you're addicted to the following, only eat them in the SMALLEST QUANTITIES AT A SHOT:Chocolate barsIce CreamPizzaHard cheesesI suspect that the combo of FAT + CALCIUM is lethal.I do NOT find that NON-fat milk causes as much pain (lactose notwithstanding). In other words, although skim-milk might cause me stomach upset, it wouldn't cause me muscle pain, especially if I take it with, say, cornflakes & bananas.


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## LoriAnn (Jan 31, 2002)

Hi Mally,I've been lactose intorent for as long as I can remember, so I always avoided dairy products, except for the chocolate which I only gave up about 8 months ago. I also have to avoid greasy foods because of the reflux, but I eat alot of margerine, can you recommend a good one?


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## gfinster (Jan 11, 2001)

Hi LoriAnn - I'm a newly diagnosed FMer and I'm taking Neurontin (aka Gabapentin). Elavil was 1st choice for both my PCP and Neurologist but it made my heart race so they both had Neurontin as second choice and it has worked quite well for me. I had major insominia - no 4th level sleep and this drug has made a big difference. I 300 mg before bed and I sleep well, wake up rested and don't have a hang over. It has very few side effects - one of which is C which you said was ok. It's drug that is being used for numerous "off-label" applications. It is mainly an anti-convulsant for epilepsy and pain med for amputees with phantom pain but they've found it helpful for sleeping disorder, depression, peripheral neuropathy and in some cases FM. I did have to ease into it over a couple of nights with 1/2 doses because I had trouble walking the first night but after the third night had no trouble with it. I've been taking it for two months now and have had significant improvement in muscle fatigue. The only other side effect I've had is some water retention. It also has almost no interactions with other drugs so it's seems to be a very safe med and maybe worth a try for you.Here are some links with info for you: http://home.tampabay.rr.com/lymecfs/nfaq.htm (mute your volume control!) http://www.pslgroup.com/dg/D6AC6.htm


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## LoriAnn (Jan 31, 2002)

Hi gfinster,Thanks for that info, I saw your other post and I was curious about it. The elivil worked so well for so long, I did have the side effects, like weight gain, but I was seriously underweight at the time so that was a plus, but the elivil just isn't as effective as it was and it feels like its destroying my stomach. Further research on the Remeron, showed that it can cause the same problems as the elivil, so its not my best option. As soon as I'm done at the board I'll check out your links.Is neurontin addictive? I love the idea of not having that hung over feeling, something that never really goes away no matter how long you take elivil. I often wonder how much of the brain fog I have is because of the meds. I really appreciate the advice and information everyone is giving me, its a great help, I would rather have the info first rather than try every drug there is looking for the right one.


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## LoriAnn (Jan 31, 2002)

I just checked out the links, WOW, very surprising stuff, and promising too, thank you.


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