My husband was diagnosed with CFS. His case is very bad and he thought he had it and it was finally confirmed. He takes MS Contin.
I have my own pain issues and was on Ultram. It helped somewhat, then I read an entire thread on here how bad it was and it scared me and I got off of it. I still had some left over and tried it for the bone pain I have , one night it helped great, I tried it yesterday and it made me sick. I don't know why this one woman wrote the horrors of this drug, and now I'm forgetting her name but everyone thanked her for revealing them.
Anyway, the MS Contin is helping my husband.
i started on amtripline then lyrica,diazapam,temazapam,clonazpam,requip,pramozle (dopamine agonist) none of those worked
i am now on baclofen 30 mg a day and fenntanal patchs (opiate 80 times stronger then morphine) change every 3 days
sertraline -antidepressant and thats it at the moment but i still have lots of pain everyday
I totally relate to your weather problems........I live in Pa too. Summer was bad here the temp was all over the place! I have found to many women some from Arizona and Alaska......yes two different worlds lol And it seems no matter where you live it doesn't get any better!
My husband says when he retires he's moving us to Arizona.........so that will be in ummm 20-30yrs so I'll let you know then if it helps lol
Oh and Drs here in Pa are horrible to give out narcotics! I don't know what part of Pa your in but Im near Pittsburgh and no one will give you Vicodins. I got some in july because I messed up my back and my sciatic nerve made it almost impossible to walk.........and only then did I get 20 pills! Lyrica and Cymbalta make me sick as a dog too.......and antidepressants do nothing for me.
I have had fibromyalgia for four years. It started when I went through my divorce. I have been okay the last couple months because the weather hasn't changed but last night it dropped and all day I was in bed. Thinking here I go again. I have a good 8 months of being sick again. Today was bad too. It feels like some invisible monster is grabbing my head and neck and back and arms and legs and squeezing them and twisting them like I'm a toy. Then I get like I have the flue and I cant even lift my head. I'm so worried about my job and staying here in Pa. I have my daughter in school. But I feel I need to move where the barometric pressure doesn't change. Some days I don't hurt and I am in the fog and I can't concentrate or think which isn't good at work either. I can't take gabitin or lyrica they make me very depressed where I cry all the time. And I can't take cymbalta or any antidepressant because they make me have seizures. But vicodin helps me the most but you can't hardly get a script for it. i just need to move to a dry climate. i quit my carbs and that seemed to help with the fatigue somewhat. But when the weather starts changing nothing can help.
I have taken many thing thru the years. I have a high tolerance and have to take something really strong to work for me. Started out on the weak stuff like tramadol but nothing worked. Docs started giving me lorecetts for years and then they did not work. I never got buzzed off these medicines they just helped ease the pain. When nothing seemed to work anymore I went to a pain clinic and they put me on oxcontin. Now this was right before everyone started abusing it. It was slow release and it worked wonderful for me. My general doc which also treated me for Fibro said he would give it to me so I would not have to drive so far to the pain clinic. He monitored me very strictly and never had a problem with me or addiction. Now this was in NC. Now I moved to Pensacola Fl. and they acted like I was a drug addict even with a letter from my NC doctor. It was completely out of the question and some doc refused to see me anymore. Finally got some loritabs which helped for a little while. After several doctors I just forgot about getting any oxys that wasn't happening. So finally found a pain management doc that put me on Subozone. It is very strong but is suppose to be less addicting and you do not get the high feeling from it. It is also used to get people off drugs. It works pretty well for me but I have tried and tried to get him to change to something else because it is so expensive and I don't have insurance.. It costs me $420 a month that is not including all the other medicines but he will not change it. I have another medicine that I take for IBS and it helps me so so much. The only thing that ever worked for me and it is $600 a month. It is called entocort ec if anyone has the problem whenever you eat everything goes straight thru u....ask your doc about this medicine it really works for me. I only take it when I flare up because of the price.
There is excellent information that everyone will want to check out about vitamin D on mercola.com. Just use his search engine, type in "Vitamin D" and it will take you to a page of his archived articles on vitamin D. In some of his articles he recommends getting a newsletter subsription from the Vitamin D Counil, too. Anyway, the point is that the RDA for vitamin D is already too low for most people in the first place. And, for us the RDA is definitely too low since we already have a problem regulating our vitamin D in the first place.
I have had all my levels checked for everything in the world. The only thing that is too low is B12. I take B12 shots twice a week. I also take a prescription vitamin called Metanx. I have heard a theory about the vitamin D with us fibro girls, we may possible need more than is considered normal.
Has any of you gotten your vit. D level checked? Low vit. D can cause bone pain.
The only reason I see a Chiropractor is due to my sciatic nerve. Ive tried Lyrica and the side effects were horrible for me, and the Cymbalta made me sick as a dog :(
I've laid crying in beds many times but still no Dr is willing to give me Narcotics. They don't make me loopy at all either, I can just feel the pain slowly going away within a half hour.
I hear you about the pain in the bones, thats how my legs feel on bad days.
I tried a chiropractor and it hurt me too bad. He did a type of treatment he does on FM patients. I really like him and I would sleep hard the night after I saw him. But, the next day, I could hardly move and would stay like that for at least a week.
I am the total opposite about meds as some of yall. I am not sensitive enough to meds. So many of them dont work at all on me and the ones that do have to be taken in higher doses.
And none of them ever make me sick at my stomach. Narcotics dont make me loopy or sleepy at all. In fact, it has been hard for me to find anything to help me sleep.
Those of you who havent tried Lyrica should try it. It works pretty good for a lot of people. It doesnt do huge things for me but it does help some. If I quit taking it, I can tell a difference in my pain levels.
Besides Lyrica and percocet, I take Prilosec, high blood pressure meds, Zoloft, Flexeril, and Trazadone as a sleep aid.
Before I started taking narc pain meds, I stayed rolled up in a ball crying with pain that was 10+ on the pain scale or in a hot bath trying to get some relief. I couldn't make it anymore without taking them. I dont know how I survived it as long as I did. The worst for me is this horrible pain in my legs that feels like its in my bones and works its way out to my skin.
I'm still in the process of finding the right medications for my FM. I had the same experience that Karajo had with the narcotics. They make me really sick, too. Tramadol had an added side effect that caused me to have problems with my speech, in a manner that I've never had before. Narcotics are often used for migraines, but they actually increase the severity and even bring them on. A friend of mine who also has FM told me the same thing happens to her with certain narcotics.
So, now I'm down to using just NSAIDS for the migraines. I don't bother using the NSAIDS for the FM itself, since they don't work for FM pain. I'm not so sure the Naproxen is doing a whole lot for the migraines either. So, I go as long as possible without taking the NSAIDS all together. I don't want to tear up my stomach over a medication that isn't all that effective on the pain. I'm using Promethazine for the nausea associated with the migraines, but even that is only somewhat effective. The nausea is always present to some degree or another, since I have migraines everyday.
I haven't tried any of the newer medications for FM. I am using a low dose of Nortriptyline at night. I don't think it works all that well on the migraines, but it does help with sleep--somewhat. The neurologist is trying to keep the dose as low as possible because I am so sensitive to medications and so I won't be any sleepier during the day time than I already am. The migraines themselves do that to me.
To add to the mix, I do use Benadryl for my allergies. Interestingly, my GERD is mainly about food sensitivities and the Benadryl actually helps with the breakthrough heartburn from the GERD, as long as I watch what I eat--avoiding the things that I know only too well bring on the burn. I save the higher doses of Benadryl for use at night, and avoid using it during the day time if I can. Like Karajo said, it does help with sleep.
Another one to add to the mix is Bentyl, the antispasmodic for the IBS. As long as I don't need to take it during the day, although I do have to still at times, I try to save that one for the night time as well. But, I try not to take it any more than I have to, because long-term use isn't recommended. It is another sedating medication. Since the cramps are what causes the colon pain with the IBS, then Bentyl helps with the pain from the IBS. I tried Hyocyamine, the sublingual antispasmodic, but it didn't help. It's also not covered by my insurance. It wasn't sedating, which I thought was good for day time use, but it wasn't effective either.
I still don't have anything that is effective for the fibro pain. Seeing my chiropractor does help, though. It reduces the severity of the pain.
Im so sorry for the struggles your having with the drs. They really can be a****!
The tramadol worked great the first day, then I took only one yesterday and I got a bad headache, nausea, and light headed! It was horrible. So I hope my pain isn't to bad today so I don't have to take any.
To Mom and everybody
The only med I take is Benadril to help me sleep.
I've tried Lyrica - can't seem to wake-up...too loopy
I've tried Cymbalta - ditto to Lyrica
A friend with fibro told me that if she gets plenty of really good, deep sleep, she feel better the next day. So the Benadril works for her and for me as well. On days that I can't walk because of the pain, I take 2 tylenol and 2 ibuprofen together. I don't like the swimmy headed feeling that narcotics give me, so I choose not to take them. By the way, I also have lupus and am on Plaquinel. It has been a huge blessing!
As far as the "doctor shopping" goes, you don't have to be seeking drugs to get the left foot from doctors. I've been hurting for over 2 years now in my flank area. My kidney is ballooned out. But the urologist don't seem to want to treat me. They just want to give me narcotics. When I tell them I can't take them, there's nothing they can do. So every doctor I see from the gyno to the GP to the rhemy, they have all sent me to yet another urologist. So #4 asked me one time, "what number am I?" So I had to explain that every doctor that looks at these pictures have all said there's something wrong with my urinary tract as well as all the radiologist who read them, so that's why I've been to as many urologist as I have. So #4 is just that now, a number.
Glad the tramadol is working for you. It made me throw-up.
bless you all
Im glad the Tramadol worked for you! I hope it lasts. I hate for anybody to be in pain with this ****! Tramadol worked for me for a little while. I swear my symptoms get worse as time goes on.
There can be a problem with Dr shopping. I guess you just have to hope they wont think you are shopping for pain meds because you are an addict. Of course, I went to each butthole doc for a while before I switched. I always held out hope that something else would work and I got so tired of going to yet another doc! I didn't come out and ask for pain meds until I had been to them several times and had tried several of their ideas first.
I want something else to work. I dont think any of us fibro girls WANT to be on pain meds. We just want to be able to survive. I have FM just about as bad as a person can have it!!
I hope you all feel better and find something that works for you!
I have no idea, but if your trying to find a Dr that works for you, they see as it as your shopping for a Dr to give you Drugs!
Before insurance, you could keep going until you found a Dr you liked. But now with insurance you have to have them in your group and with my insurance they make you change pcp's before you even see the new Dr.
Why the Dr won't allow you to pay to have a consultation with them first is beyond me.
Is Dr. Hunting considered a problem in the eyes of the medical world?
Well I took the Tramadol....and it WORKED! I think the last Dr only gave me 25mgs and this Dr gave me 50.
As far as pain management Drs go, I had one last year before I became pregnant (he was the ONLY one in my area) he was horrible. He did give me my vicodin but I didn't trust him. He had many offices, he never had my file with him, never knew what I was on. One month the vicodin was ok for me, next month he wanted me off them. Every month was different.
I was trying to find another Dr and found out I was pregnant. Last time I saw this pathetic excuse for a Dr was March of 2008.
Im so tired of going to different dr's. They call it "dr shopping" but isn't that what you HAVE to do to find a good Dr?
Im glad you were able to find a good Dr. :)
The meds I take are:
Klonipin 2 times daily (bid)
Baclofen 3 times day
Gabapentin (neurontin) 3 times day
Alprazolam 1 - 2 times day
Amitryptiline (very small dose 25mg) 1 time daily (betime)
Prescribed vicodine..But DO NOT take...(I do not like how it makes me feel)
I also take ;
and Pharmaceutical grade vitamins
It was VERY hard for me to find the right doc who would then send me to the right Pain management doc so that I can have the pills I have now. The best advise I can give you, is to DEMAND help with finding a PM doc and if that doesn't work then you have to find yet another FM doc who will send you to the right PM doc. It takes time and is extremely frustrating but is well worth the trouble in the end. I promise!
Tell your doc that you have tried sooo many things and nothing has worked except for the occasional pain pills they give you. Tell him that you cannot stand to be in this extreme pain anymore and that you feel like you are being tortured be the medical profession! LOL, that is what I felt like and that is what I told my FM doc. He sent me to a PM doc that was a *****. I told him that so he sent me to another who I love. It took me a lot of docs to find that FM doc who cared enough and was understanding.
Good luck sweetie. I feel your pain.
Why is it so hard for these physicians to prescribe the medications that actually work? It's so frustrating.
I went to my Dr last month because of my Sciatic Nerve (im with a chiropractor now) and she gave me 20 vicoden ES and I finally had some relief from my fibro and sciatic pain. My sciatic isn't completely better but with this flare Im coming apart. I quit smoking too and its making the pain so intense.
Im so frustrated.
I am on tramadol also and it does nothing
I called my Dr yesterday, she called in Ultram (tramadol) Ive been on this before and it does nothing.......I have to pray that maybe it will work this time because I have no other options.
I have tried everything under the sun as well and I had one good combination before I had to go on the state insurance. The meds were Lyrica, 75mg, Skelaxin 800mg, Vicodin 500mg, Cymbalta 60mg, and Gabapentin.
I have tried everything under the sun. The only thing that gives me any relief is narcotic pain meds and Lyrica together. The Lyrica helps more with the pain that comes from all my tender points. I suffered with terrible pain and no pain meds for too long. I say if the narcotics help us to survive then so be it, take them.