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im too young to feel this old...
8 Replies
AshersMom - August 24

Ive only been dx'd a week now. Dr tells me just tylenol will ease the pain. It doesn't come close to doing that. Its all day every day and with all the other stuff-- fatigue, stiffness, crappy sleep... i feel like i can hardly make it thru the day. How long do i have to experiment with meds before they actually give me something that will help???
Pain in idaho


Noca - August 25

Ask to try Gabapentin or Cymbalta. Tell them how your pain affects your quality of life and how Tylenol doesn't do jack all for your pain.


AshersMom - August 25

Thanks. It seems like drs have no idea how often and how bad we .hurt. i don't wanna be confined in my house but hard to get out when i think how its gonna hurt later


Stacey373 - August 25

Hi ashersmom - I'm so sorry you are having to deal with this. In my opinion, the medications you should be taking are - an anti-depressant, sleeping meds, pain meds, and vitamins.

Over the counter medications do NOT work for fibro sufferers....if your doctor doesn't know this, you should maybe look into finding a new doctor that understands fibromyalgia better.

cymbalta is a good anti-depressant that also eases some of the fibro pain. I've tried cymbalta and wasn't able to keep taking it cuz the side effects made me feel like I was having a heart attack. I've tried MANY anti-depressants over the years and Lexapro is the one that works best for me.

From what I understand, amnitiptaline (can't spell that one!) works good for sleeping. I actually take OTC sleeping pills along with flexeril, which is a muscle relaxer. And so far, these are working for me...if for some reason that changes, I will ask my doctor for a prescription sleeping med.

If you are getting alot of headaches and neck problems, you should really try to get a muscle relaxer to help with it also helps with sleeping better.

Have you had a blood test to find out if you have a vitamin D deficiency? Most Fibro people have this and need to take a prescription vitamin D. My doctor prescribed me 50,000 IU to take once a week. I'm also taking vitamin B complex and magnesium which my doctor suggested and I got those at the local pharmacy. I just started taking these so I don't know how much they help yet.

Over the counter pain meds DON'T will just end up with stomach problems from taking so much of it. your doctor should be prescribing you pain medication. This one varies depending on your doctor. It seems everyone takes something different and the dosages of these vary too. I take Norco for pain. Norco is basically a very strong Vicodin.(it's all hydrocodone) Norco is twice as strong as Vicodin and it has less tylenol in it. (which is good, cuz tylenol is what will damage your body) but it really depends on what your doctor is willing to give you when it comes to the pain meds.

My doctor also recently prescribed me methadone and it works pretty good. I've been taking one at night to help with all the aches and pains and I haven't been waking up with a headache every morning since I started taking it.

To me, I think the very least you should be taking is vicodin. anything less really just doesn't help much and you end up taking way too much trying to relieve the pain. I know alot of people take tylenol 3 and ultram, which are very mild compared to vicodin. But I guess it depends on your level of pain and you really need to just figure out what works best for you (and, again, it depends on what your doctor is willing to give you!)

also, almost everyone takes neurotin (gabapentin). I took it for a long time, but eventually it just quit working and I quit taking it. But it does help alot of people so you should talk to your doctor about getting that too. it made me very drowsy, so I took it at night when I went to bed.

okay....I think that's all! It is very frustrating finding the right combination of these drugs that will work for you. But once you do find what works, you should start feeling a little better. I wish I could say that the meds will take it all away...but they don't...they just help to relieve the pain and other problems. But it is very important that you take these meds because any help is better than nothing at all...which I'm sure you've figured out by now!

I hope this information helps you. Take Care, Stacey :o)


AshersMom - August 25

Thanks Stacy. My dr gives me very mild muscle relaxers and refuses to give anything stronger for the pain. He says its my last resort. I do have an appt with a rheumy in 3 weeks. And im hoping he will help and actually try to ease my pain. Stop worrying about addiction and help. Addiction is the least of my problems lol. Sorry to vent. Thanks


Stacey373 - August 25

I totally agree! If I'm what? I'd rather deal with that then not take any pain meds and be in bed for the rest of my life! The hard part is finding a doctor who agrees with that.

I really hope the Rheumy doctor helps you. More than likely, he will start you out on a really mild pain med. And you will have to work your way up to something that will actually help. It's just the normal "process" of dealing with a new doctor.

But hopefully this new doctor won't be so reluctant to prescribe you the meds that you need. Good Luck, Stacey :o)


AshersMom - August 25

Thanks :-) ill try to keep my chin up til then :-)


Fibrosukz - September 3

I have also ben diagnosed approx 2months ago and my family dr will ONLY give Tylonel #3 and my rheumotoligist gave me Cymbalta that did nothing so now he gave me Welbutrin and Trazadone(for sleeping) but he doesnt beleive in pain meds. :o( I am in canada and im trying to find a doctor that will stand by me and my Fibro cause i cant live in pain for the rest of our lives, just cruel! I also have TMJ for 5 yrs and all i get out of dr's is oh well suffer.


Fantod - September 3

Fibrosukz - Welcome to the board!

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation and the Centers for Disease Control and The World Health Organization. OTC remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your husband, family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

A rheumatologist is the doctor best suited to help you manage your symptoms. There are now three prescribed medications to treat the pain of FMS. You have probably seen the ads on TV for Lyrica. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.
You can also use Google to search for help in your area. Type in the name of your metro area and fibromyalgia and see what pops up.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. That also includes Splenda. If you require a sweetener, use something made from the nontoxic Stevia plant like Truvia or Sun Crystals which can be found right alongside the other sweetners in any decent grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

TMJ is a very common problem among people with FMS. I have it myself and can appreciate how painful it can be at times. You need to find a dentist that specializes in TMJ and have a bite splint made to allow your jaw to relax. I wear mine at night while I am sleeping. If you can not afford to do this, you should be able to find a splint that you can mold yourself using hot water at the drugstore. The latter is not the preferable solution. Seeing a dentist is a much better option.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

And finally, the National Fibromyalgia Association website has a list of fibro-friendly doctors available for quite a few states. Not all rheumatologists are created equal. If you feel that your current doctor is not addressing your needs, than get a second opinion. Be sure to take a copy of your medical record and current tests with you to save time and money.

I hope that my comments are helpful to you in some way. You are not alone. There are a lot of good people on this board who will listen, try to answer your questions and see you through a bad day. Good luck and God Bless.



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