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questions with fibromyalgia
8 Replies
stevesgoodgirl - March 30

I was just recently diagnosed with fibromyalgia. I have had the pain for over 5 years and i am only 26. Many doctors told me i was too young to have widespread body pain and just kept putting me on anti depressants or anti anxiety meds which did not work. I have arthritis as well in my whole body and i feel like no one understand how i feel. I finally found a doctor who believed me and diagnosed me with this but he acts like its no big deal and just put me on very low dose of lyrica. I dont like lyrica because it makes me feel air headed and foggy.,, plus i have heard of extreme weight gain with the med and i really dont want that! I live in a small town and there are really no other doctors for me to see to prescribe me a diff med cause the one i see now doesnt want to give me anything else but lyrica.. so... Does anyone know any other drugs or herbal remedies i can buy over the counter or online that can help? Its hard for me to work...i am an RN in a doctors office. I told the doctor that i work for that i have fibromyalgia but truly doesn't understand how i feel! He is very nice, but he thinks that fibromyalgia is a psychiatric disorder.. how do i make him understand? It is also hard to be intimate with my husband because i constantly hurt when he barely touches me and feel constantly like i am bruised. sorry this is so long, but i just thought that there is someone out there who understands how i feel and can give me some good advice. thanks

 

Fantod - March 30

Your story is not unusual at all. Unfortunately, there are still a lot of doctors out there who think Fibromyalgia (FMS) is a figment of our collective imaginations. It is recognised by the National Arthitis Foundation and the Center for Disease Control. Go to Amazon.com and order "Fibromyalgia for Dummies." It has good basic information and you can share it with family members and friends. Also take some time to read all of the information in the blue boxes on the lefthand side of this page. This is the best site on the Internet for information on FMS.

You are going to have to drive somewhere to get the kind of care that you need. Go to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly health care providers in your area. A rheumotologist is the doctor best suited to treat FMS. You may also want to consider finding a chronic pain specialist. I have both and they work together. Your current doctor is not handling your situation properly - you should be furious.

Giving a patient with FMS Lyrica and expecting that to sufficient is ridiculous. The most common complaint associated with Lrycia is rapid weight gain. Unfortunately, only certain classes of prescribed medication work for the pain associated with FMS. OTC remedies are not effective. You would be wasting your money and probably destroying your stomach and liver by using excessive amounts of Tylenol or Aleve. It takes time and considerable tinkering to find the right dose and type of medication for each individual FMS patient.

There are two other prescribed medications to treat FMS. Cymbalata is an antidepressant that addresses both the pain and depression that usually accompanies this syndrome. I use it myself and have had good results. The other medication is Savella which was approved by the FDA last year. It has been used in Europe for decades and some people are having very good results with it.

You should also be on a sleep aid like Amitriptyline. 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 days activities. No deep sleep means higher levels of pain.

The problem you have with feeling bruised or pain when being touched is called "Allydonia." I have it myself and it can be a real nusiance. Some days I would rather stay in my nighclothes than have to wear a bra or anything that puts pressure against my skin. There is nothing to be done about that except learn to live with it. My symptoms with regards to Allydonia come and go. Some days are better than others. I think you'll find if you can get some restorative sleep that it may improve.

Diet is very important as well. If you use anything with an artifical sweetner get rid of it. If you need a sweetner use a nontoxic Stevia plant product like Truvia which can be found in the grocery store alongside the other sweetners. Stay away from deep fried foods and lunchmeat (nitrates) which can increase your pain level. If you are not a big fan of water, learn to love it. It is important to combat fatigue and get your medication circulating throughout the body properly.

Get an appointment with a rheumotologist. Take a complete copy of your medical file as well as copies of any recent bloodwork or tests to save time and money.

While you are waiting, there are two homeopathic remedies that may help. Buy some melatonin (1mg) which is used by business travelers for jet lag. Start taking it the night before your day off. Start with 1 mg and see how that affects you. If 1mg is not enough, break the tablets in half and increase the dose until you are able to get some solid sleep. Don't go any higher than 3mg. I've been using a homeopathic remedy made by Terry Naturally called "Curamin." It seems to work pretty well for breakthrough pain. You should be able to order this on the Internet. As always, with any medication, make sure you understand how to use these remedies and any risks associated with them.

I hope that my comments are helpful to you in some way. Any long term FMS patient will tell you that you have to act as your own best advocate when dealing with this health problem. Good luck and let us know how you are doing.

 

stephanyb11 - April 1

i am so glad i read this post!!! it would absolutely infuriate me that my doc is not working with me the way yours isn't. i think it is for sure time to find a new doctor!!! You deserve be treated with respect and compassion when you have a such a contraversal (sp) condition...

For a long time i was scared to take medication for the fear of becoming "addicted"...then i posted on here and my fellow FMS friends convinced me there is a big difference between use and abuse...so now i take Hydrocodone for the pain i am also on Savella, Gabapentin and Baclofen. I took Lyrica for about 18 months and gained nearly 45 lbs..it did help with the FMS symptoms but made me gain ALOT of weight!!!

Fantod you are always so knowledgeable and i learn so much from you!! and i am so glad to know that i am not the only one that has the extreme skin pain!! There are some days my skin hurts to bad to even have on clothes and i will lay in bed and just have the linens on, i really thought maybe this was just a medication side effect or something, but now that i know that it is a FMS symptom it makes sense to me.

sorry i kindof got long winded here!!
God Bless
Stephany

 

PEIgirl - April 1

Hi, I just registered here, but I just had to comment on your fear of gaining weight with Lyrica. I have been on Lyrica for 4 years now and I have never gained an ounce of weight and have experienced no other side effects from it. As you can see, weight gain doesn't happen to everyone.

 

Fantod - April 2

PEIgirl - You are very fortunate that weight gain has not been a problem for you while using Lyrica. Yes, there are exceptions but more people than not who use it gain weight. What really ticks me off is that the doctor managing the case doesn't try another medication once it is clear that weight gain is going to be a problem. If they were more proactive, a bunch of FMS patients would not be struggling to try and get the weight off in addition to everything else. Take care.

 

stevesgoodgirl - April 3

Thanks for your comments and understanding! Thanks for the advice everyone! Unfortunately the doc who is prescribing me the lyrica is a rheumatologist. we did a complete blood work panel, x rays, mri's etc.. He just gave me the med and said thats the best we can do. there are only 2 rheumatologists in my area. the other one didnt want to see me cause i had to fill out paper work on myself and pretty much he said that he cant help me.. i guess he didnt believe me or thought i was joking,, i dont know. these doctors are crazy here! I guess i am going to have to drive a couple hours to see a good doc, the only prob is that if i drive that far is that doc going to treat me the same? I thought rheumatologists understood that FMS is real! THe lyrica is helping with the pain and i never had anything else ever touch my pain in years! so i am thankful for that, but i have to take caffeine pills to stay awake! i dont know what to do cause i dont want to stop taking lyrica since again it is the only thing that has ever touched my pain.. but i cant stay awake. i even tried taking it at night before bed which works, but it doesnt last through the day so then i have to take another one during the day which makes me almost fall asleep. So anyways i am frustrated even though i am feeling a little better. :(

 

Fantod - April 3

With regards to seeing another rheumotologist - go to the National Fibromyalgia Association website and register as I suggested. Then you will be able to see a list of fibro-friendly rheumys in your area. Doing this shuld eliminate getting another rheumotologist like the one currently treating you. Your current doctor is not up to date on the current treatment protocols for FMS and/or just plain lazy.

There is no way you should have to take caffeine pills to stay awake. You should not be at all willing to put up with this situation. Taking those pills is just adding an additional layer of stress to your body which is already in meltdown mode. The longer a chronic pain cycle goes on, the harder it is to stop or manage. Please consider finding a fibro-friendly rheumy ASAP. Take care.

 

huskymom - April 5

Stevegoodgirl, I two am new to all this I have been having alot of trouble for the last three years, and after several trips to the emergency room and hundreds of trips to different doctors, pain management ect. My nuro. doctor gave me the tender point test and diagnosed me with fms. he said that I had 17 out of the 18 points. He then refered me back to my family dr. whom he said was one of the best with FMS in our area. Shocked me. but he has been great. Right now he has me on four meds. I like you could not stay awake , and caffine is the worst thing you could be taking , so since I am also in collage, I had fibro fog, he gave me Concerta I take two aday when I get up along with 2 Cymbaltas, then for pain I take tramadol this is because just this past winter I was rushed to the hospital due to an allergic reaction to Ibrofen, which I have taking all my life, then when I know that I am home for the night I take,two Flexoral muscle relaxers to help my muscles sleep and then an hour before bed I take Lunesta this is a sleeping pill. Do I like taking all this no but on most days it really helps but then you have days like I am having to day and nothing I take or do, ice, heat, hot bath nothing gets rid of the pain, but that is cause we have been having storms. so I will just have to stay in bed and ride it out. I wish you luck and if you can't find a rheum. you might try a neuo doctor or a pain management center. Just keep trying until you get the results you deserve. I will be praying for you and all the others on this site.

 

lucyvanpelt - April 6

This May will be the 2oth anniversary of my tryst with FM! I have gone through the entire gamut of doctors and have had family and friends and doctors ridiculing me for my obsession with pain. One senior doctor referred me to a Psychiatrist as he felt I was depressed. I was vindicated when the diagnosis was secondary depression due to constant pain. My diagnosis of FM came in as recently as 2005 and was by a Homeopath.
Constant pain, itching (everywhere and I mean everywhere), IBS, constant fatigue and of late fibro fog- you name it.. I have it.
After being through all kind of medications, what works for me are simple OTC pain killers and regular stretches. No strenuous exercises and the belief that this pain too shall pass and that I am not going to let this kill me. Faith in yourself is very important. Even your doctor will not understand your pain. And only a FM patient knows how crippling it is.
Deep Breathing when the pain levels are high, heat treatment - maybe standing under a hot shower..and rest. Listen to your body. If under too much pain, rest. If bearable, move. You will be able to set your own limits soon.
There is nothing wrong with taking medications. They are not addictive. Living with the pain is killing.So choose to live with less pain.
You and only you will be the best care giver!
Information helps. So read up as much as you can on FM.
SOrry for the long post.. but to concise 20 years in a single post is difficult:)
And last.. keep smiling. FM is not a death sentence.. just feels like that sometimes.. and there will be good days/weeks..

 

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