[shellsmt]

Hi,

I have had fibromyalgia for 18 years now. I am only 49. I work in the medical field as an MT. There are no support groups for our chronic disease. I will start with this first, my doctor is great and he has been trying to find a combination to help me with my chronic pain. I have taken many many trials of drugs over the years. My last combination has been Darvocet during the day q.6h. and Vicodin with Xanax at night before I go to bed just to be able to fall asleep. I ache so much I wake up everytime I move which is quite a bit. Because of the damage that could happen taking acetomenophin for so long (Darvocet for 5 years) (Vicodin for 6 months) we are trying a different way to go. We are now going to try the Fentanyl patch at 25 to start. Has anyone out there used this patch. I have been reading up on it quite a bit but personal experience is vastly large. I am just trying to get in general how people feel with using this patch and maybe someone has used it that has fibromyalgia. I will end this for now and I am sure I will continue from the responses I get back.

Thanks so much

[zippysgoddess]

Well, I don't have fibro, but I do have a spinal condition that causes chronic pain, and I tried the patch about a year, and a half ago. I have to say that if you have any problem tolerating strong narcotics, then don't try it. It is 80 times stronger than morphine, so to tolerate it, your body really has to be able to handle large doses of heavy narcotics.

I was taking Darvocet for several years, then they tried to take me straight from that to the patch, and it was awful. I was so sick, I couldn't even hold down water, and I ended up only using one patch!

These patches have a half life of 17 hours, so while a lot of people have used them successfully, those who have trouble with them, still have to suffer the side effects for over 24hours after they remove the patch.

verwon@gmail.com

My information is not guaranteed correct. I do not get them right all the time, but I do enjoy the hunt~

[mpvt]

Darvocet is an extremely weak narcotic they don't even prescribe it anymore in Canada.Going from propoxyphene to fentynal would be difficult.Would your doctor agree to putting you on ms contin (sutained release morphine) that way you could build a toerance before going to the patch but that doesn't really make much sense does it.....Dave

[shellsmt]

Hi again,

I thank you for your replies. Patients are put on the dosage of 25 to start as this dose is for people that have not been on opoids before or narcotics. Yes, they do prefer that you have been on opoids and other things like morphine, MS Contin, etc. before you start on the patch, but it is not necessary. Zippysgoddess, you stated that you ended up only using one patch. What do you mean? You only take one patch per 72 hours. I have tolerated the narcotic Darvocet for a long time and yes it is one of the less stronger ones, but it took care of my pain at the time. I think that my body is building a tolerance to the Darvocet and needs something stronger to help this joint pain. In case you don't know fibro is a connective tissue disease and our bodies are full of connective tissue. Firbromyalgia is just another name they came up for it as it used to be called "chronic fatigue syndrome." If you could experience it you would understand that it does not get better. We do have to keep moving, however. I xctry ski and have 6 dogs, two GSPs. I am a compulsive cleaner. But, we are in a catch 22 and by that I mean that if you don't move you hurt and if you do move you hurt. Anyway, I started this patch today and I am not feeling bad at this point, only 3 hours right now, but I will visit my doctor in 1 month. He did tell me I could take my Darvocet for breakthrough pain say after 2 days if I feel the pain is not being relieved. I could go on and on. I guess there is really no answer to this and no miracle cure. But, I am willing to try anything right now. I am lucky I have a husband that understands.

Zippy, may I email you personally[?]

[Casey55]

shell,

I was on the Fentanyl patch last year for severe back pain. I had been on Dilaudid first, which worked great for months, but the pain got so bad I was put on this. The patch worked really well, it doesn't take all the pain away, but it sure made it much more tolerable. I was 25 the months before the surgey and switched to 50 on the operating table. I came off it 2 months after that surgery.

That patch is great because you get continuous, steady pain relieve for 72 hours. You change it ever three days. So there is no having to remember to take it ever so many hours or waking up in the middle of the night in pain. I did have problems with some of them staying applied and the drug company refunded my money for those. They can cause a rash from the sticky stuff. I put my first one on my back, below my neck and got a terrible rash. AFter that I put it on my upper arms and had no more problems with rashes.

The only side effect I really had was sleepiness. That is very common with all the narcotics. I could't even drive, because I feel asleep behind the wheel while stopped, waiting for a red light. I slept a lot during the day.

Good luck finding something that will help your fibromyalgia pain. I have it too and found there doctors are very reluctant to give narcotic for it. It has more to do with the gov.t regulations and they fear getting in trouble than the excuse they use that they don't want you to become an addict. It is so stupid because this pain is very real and can be so dibilitating. No one should have to suffer so when there are meds than can make living more bearable.

If you can find a doctor who will give them to you, that is great.
Good Luck,
Casey

[Cashless2]

I have been on Fentanyl 7.5 mg patches for a month, had a side effect that my whole body blew up 2 clothes sizes in a week, I went to my family dr. who gave me pottasium and lasixs which helped some. However my pain management dr who gave me the fentanyl was trying different things but I believe he started me out on too high a dose. So if you start seeing yourself get bloated get some help fast!
I did get very sleepy from the patch but it worked for my back pain.
I am now on oxy and would love to get off and find something else that isn't so well known.


Cashless2

[shellsmt]

Casey55,

I am glad that someone that has fibro has answered my concerns. I do appreciate all of the answers I am getting, however!!!!

The problem with this disease is that it will never go away. We will have it until the day we are no longer on this earth. Antidepressants used to be the drug of choice for fibro when they first found out that I had it at 28 years old. The doctor I had before did not believe there was such a disease and did blood tests. My sed rates came back high, I was positive for both homogenous and speckled ANAs. Some other tests were negative. My RA (rheumatoid arthritis) test always came back negative. RA can make a person debilitated but I never thought that fibro could or would. I am now 49 and hurt more than I ever did. He just kept telling me to live with it and prescribed anti-inflammatories. Anti-inflammatories do nothing for fibromyalgia. I changed doctors and he is so easy to talk to and tell him my concerns about addition or dependence. I found out recently that his wife has fibromyalgia and I think that is why he is so understanding with what I a telling him. You know that the more tired we get the more we hurt. I am going to keep going though. I am xctry skiing today as a matter of fact and I will see how this patch is going to help me.

I still have the Darvocet, Vicodin for breakthrough pain. I take Xanax for my anxiety as my sleep patterns are bad. He also started me on Cymbalta which is an antidepressent but is also supposed to help people with fibromyalgia. I wake up at least no less than 10 times a night, mostly because when I move I hurt. I am a clock watcher. I am in the medical field and have been for 28 years so I do understand about a lot of drugs and make sure I ask a lot of questions from my doctor and pharmacists.

Because we were concerned about my kidneys and liver longterm filtering all of the acetomenophin and me having to take pills every 4 to 6 hours to function, I asked him about the Fentynal patch from a suggestion from my pharmacist. WE talked in great detail about it and said that he woulds start me on 25 for one month and then I will see him in December.

This is what I am feeling after 19 hours on this patch. I am very tired and feel a bit euphoric, which I also had when I was taking Neurontin. The Neurontin was worse. I almost feel consistently what I feel when I am into about 40 minutes of my Darvocet or Vicodin but it is constant and is not going away. I am able to function okay. I have done laundry, shoveled, played with my dogs. The thing that I notice the most is that my pain is subsiding, which I hope is not wishful thinking. I am thirsty so I am drinking a lot of water and juice. My hips have been the worst and I am able to get up a bit better and this morning did not have to roll out of bed. I am kind of hoping that these feelings taper of some and my body adjusts to it because at this time I am feeling some relief and if this works I am sure he will keep me on this, possibly longterm.

I asked him if I was considered addicted to my other medication and he stated that he did not feel that I had an addition and that I am only dependent on them. I have tried enough combinations and I just want this to work.

Thank you. Please reply if you would like again.

[tina_b]

I tried this Fentanyl and had faced constipation problem while I was on them. My doctor suggested me to drink plenty of water to overcome this problem and I used to drink at least 10 glasses of water daily during that time.

[brokenangel]

i have chronic back pain that causes me to be on the patches and have recently been told told by a pain specialist that he suspected i may also have fibromyalgia, although it hasn't been confirmed. when i first started the 25mcg patch, all i could do was sleep for the first two weeks. i was also mildly nauseated and lost a few pounds due to this. after my body got used to the drug, i began to feel more like my old self than i had on any other pain meds to date. this lasted app. five weeks. then the pain came back and i had to get an increase to 50 mcg. i wasn't as tired and i felt pretty good but it only lasted for about a month. and about two months ago i had to get yet another increase to the 75 mcg and it is helping with the pain, as long as i keep my activities to a minimum. each person is different so you might have a more positive experience than i have. i would not advise this drug if you cannot tolerate strong medications, as others have advised you.
wishing you the best

[imnessa]

PLEASE LET ME KNOW IF ANYONE IS PURSUING THIS TREATMENT OR IS CURRENTLY IN TREATMENT, I'VE HEARD A LOT OF GREAT RESULTS WITH THIS.
Central Hypothyroidism. The incidence of central hypothyroidism, involving hypothalamic or pituitary dysfunction, in the USA population at large is about 0.00021% (12). My research group has found that of 92 sequential unselected FMS patients, 40 patients (43.5%) had laboratory test results consistent with central hypothyroidism (16, 18). Other researchers have also reported high incidences of test results consistent with central hypothyroidism (20,21).
Most patients improved with dosages between 81.25 µg. and 100 µg. (Normal replacement dosages were reported to be from 25-to-75 µg.) Since that early open trial, my colleagues and I have continued to treat euthyroid FMS patients on the assumption that they have thyroid hormone resistance. We find that approximately 75% of euthyroid FMS patients markedly improve or completely recover when treated with what we term "metabolic rehabilitation." The treatment involves the use of T3
Armour Thyroid, a natural thyroid hormone medication, may be helpful if tests show abnormal thyroid function. People with fibromyalgia may want to have their tests examined by both conventional and holistically oriented physicians because levels of thyroid hormone in the blood are often interpreted differently. Specifically, people with fibromyalgia may want to ask for an assessment of T3 levels, a lab test often not done by conventional doctors

[msjennabaker]

Hi Shell. I am 25 years old, and I was diagnosed with FMS almost a year ago. On top of that i have failed back syndrome from a botched spinal fusion surgery. I am in SO much pain every single second of every single day! I have been on Percocet for the last 5 years for the back pain...(taking only as directed). Well, I recently moved to Nashville and now have a new doctor. I was discussing pain management with her, and she started me on the fentenal patch 75mcg/hr. I was really excited because I would have constant pain relief without having to take pills and I was about to get remarried and I wanted to feel well on my wedding day. Honestly, the only benefit I had from the fentenal was being able to sleep through the night. I threw up a lot, but I am not sure if that had to do with the patch or the fact that my kids went to visit my ex husband right after I started on the patch. After two weeks, I decided to get off the patch and back on to Percocets. I break out in rash a lot from the FMS, and you can't take benedryl while on the patch...you're not supposed to take hot baths, or sit in hot tubs, and those are two of my favorite things to do. I had a hard time getting it to stick anywhere besides the side of my abdomen. I wouldn't say that the patch is bad...I'd just say that you have to weigh the benefits/downfalls for yourself, and see which treatment is best for you.
I hope this helps you...I know it's a little choppy, but I have a 3 and a 4 yo boy...and they are very inquisitive lol, so I have plenty of interruptions. I pray that everything works out for you! And, if you have any advice for me on dealing with the FMS for years and years, I'd love to hear it!
Jenna

[McBunnyTx]

After 7 yrs on dilaudid, and before 5 on vicodine of differenr strengts, my experience with this patch has been fantastic. I do have someting for break through pain but rarely have to use it. My patch is 100mg.

[submom]

Unless you already have a bad liver i would ask your DR for Norco, it is the same as vics with half the tylenol....for the breakthrough pain....also...there is another board on the web that has a hidden cronic pain section...go to it...i am going to try to leave web address here...and once you get there and sign up...you can Private message me from that board or you can find a moderator over there...they can help you...the reason it is hidden is because it is a detox board...and the folks there with actual pain dont want to distract those trying to detox with words like VICODIN, MS CONTIN and such..its not hidden for anyother reason..

opiate detox recovery dot com Of course you will leave out the spaces.

[christinab73]

I'm a 34 year old female who has had back broblems since i was a child. About 7 years ago, my general practicioner started me on pain meds, i think it went vicodin, percocet, demrol, dilaudid, then came the duragesic. I was on 150mcg of that drug for over 5 years. I had been seeing a specialist during this time, getting epidurals, facet blocks and what not. After awhile, i was having bad breakthrough pains, so he just wrote me a script for percocet. October 4th was the day he told me i no longer would be using patches. he sent me home with a weeks worth of methadone and a clozipine patch. withdrawal from this drug is PURE HELL. there was no weaning, just a few methadone pills, then cold turkey. If i didn't have my husband by my side supporting me the best he could, I would not be here today. You won't be able to sleep, i still have diaharea and vomiting, i ended up in an urgent care clinic last week and had to have 3 bags of fluid dripped into me. This was the hardest thing i ever had to deal with. So, if you decide to go with the patches, make sure you have a good dr. that wont pull the rug out from under you. I wish you the best

[ymccormack]

I think the best thing about the patch is that you wake up feeling GREAT! The only problem I can report is that it falls off really easily...get some good waterproof surgical tape (or kids waterproof bandaids will work in a pinch) to hold it on and use it right away -- once it loses it's stick -- it's worthless.

I had a little trouble sleeping at first...but got over that fast.

Good luck!
YM

[mbales5459]

Everyone has different side effects to every medication so no matter what your taking your going to likely have some side effect but when it comes to the patch I think I can help since I have been using them off and on for about 10 years. The old patches were much larger and used to have a very thick gel in between the transdermal (passes through skin) layer in fact it was so thick that you could cut the patch open and rub the liquid inside on your body and get High as well you know what but it would also slow down my breathing alot I mean from normal of about 16 breaths per minute to about 4 which was not good. Anyways the new patches today are smaller and they come layered in between 4 peices of plastic. The trick to using them is simple. When you first put the patch on, hold it against your body as tight as you can I mean you really have to push with your hand for like 45 seconds at least, you can use something warm but not hot and they stick just great. Dont put tape over them because they need air passing through them to help push the medicine in through your skin. Dont put them where your body has any fat whatsoever because they wrinkle really easy, try to find your collar bone up either above your heart half way to the bottom of your neck or on the other side of your breast bone in the same place, make sure you dont have any hair there. Also if you sleep on your side dont put them in places where your skin will bend otherwise again they will come off. Now for the sickness I bet most of you were sick from not having the drug in your system long enough before your fast acting drug got out. Most of you were using short acting drugs. The first signs of drug withdrawal are 3 very clear signs, one you throw up, two you start having cramps and diarreaha, and three you will start to sneeze again. Yes sneeze its a autonomic response to withdrawing from the short acting medicines. The Patch doesn't work for up to 18 hours, it can work for as long as 72 but I have found that after 48 they start to lose their real pain killing effectiveness. Fentanyl is a very powerful narcotic and there are a host of new drugs that you can try before going to this one. If your only using short acting narcotics I would highly suggest not using the patch until you have expererinced and I mean at least a year's worth of long acting "chronic pain meds" For those of you who can't live without vicodin or percocet they have a new drug in 5, 10, 15 and 30 mgs called oxycodone not oxycontin, it is the short acting version of percocet but has Zero tylenol or acetamenophine in it. As far as your FMS is concerned have you tried any of the neural drugs like neurontin, there are two others that are new my sister is taking them let me look them up and I will post them for you. I am writing a book called "Chronic Pain, Doctors are lame, Going Insane" if any of you want to write me and tell me your story I might put it in my book. I will pray for everyone who wants help, anyone who needs help and especially for those who can't get help. Have a wonderful and Pain free day!
mbales5459@aol.com