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Newbie needs some help :)
9 Replies
LissB - November 27

Hi, I'm 23 (almost 24) and I was just diagnosed with Fibromyalgia on Wednesday. I have to say my Dr was excellent. He really listened to me, answered all of my questions, and was very thorough. He gave me alot of information, but really everything is just overwhelming...
I've been having bad pain for over a year, but I ignored it figuring it was cause of my profession (I'm a dental assistant). It got worse. The past6 months have been horrible so I finally decided to go to the Dr. I couldn't sleep cause it hurt so much, when I finally fell asleep I'd wake up from he pain, I was always tired, always in pain, and miserable because of it. It got to the point that some morning I couldn't get out of bed by myself. I have a very high tolerance for pain, but it was horrible. I went to my Dr about a month ago, he did a ton of blood work and tests, referred me to a rheumatologist, and I finally got a diagnosis. I was really hoping my pain/fatigue/everything was caused by something silly like not enough vitamin D or something...but no it's fibromyalgia. My Dr didn't put me on any kind of medicine (I wouldn't have taken it anyway)..to be 23 and not be able to do the things I love, and to hear this isn't going to go away anytime soon really just broke my heart. My Dr told me some people feel better with certain exercises and diets, others say it makes them feel worse. I have a stressful life and I need to make some personality changes, cause I know stress makes it worse (I don't really express my emotions, everything kind of bottles up, so I need to work on that). I wasn't depressed before all of this, and no one seems to understand me or get it. I think I'm still in shock...but why can't they get that it's really a rough thing to deal with when you're 23 and you suddenly can't get out of bed by yourself, or you can't go kayaking anymore cause it hurts too much, or you can't hike where you love to...anyway, I guess I'm hoping some of you fibromyalgia "veterans" out there can help me out and give me some advice, suggestions, or words of wisdom :) on how to help manage this? I'm optimistic, and on the bright side-at least it's not going to kill us, give us cancer, or anything like that :).

 

Fantod - November 27

Hello LissB and welcome to the board! This is the most comphrensive site on the Internet for information about Fibromyalgia (FMS). There is a lot of good information in the blue boxes on the lefthand side of this page. And, we have a good group of people available to offer support, suggestions or just listen when you need to rant.

Fibromyalgia (FMS) is a disorder of the central nervous system. 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. OTC remedies like Tylenol do not work for the type of pain associated with FMS. Fibromyalgia is recognised by the National Arthitis Foundation, The Centers for Disease Control and the World Health Organization.

One of the reasons that you are in so much pain is that you are not getting restorative, deep sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. Treating the sleep issues associated with FMS is a crucial part of treatment. You should be on a sleep aid like Amitriptyline.

There are now three prescribed medications used to treat FMS. You have probably seen the ads on TV for Lyrica. The most common complaint associated with this medication is rapid weight gain. It may not happen to everyone but when it does most rheumotologists are not proactive about changing medications. The second choice is Cymbalta which addresses both the pain and depression associated with FMS. I use Cymbalta myself and have had pretty good results. The third and newest choice is Savella. It has been used in Europe for decades and was approved for use in the USA last year. It is going to take time and a lot of tinkering to find the right combination of medication and doseage to make you more comfortable. At a bare minimum, it will take two weeks or longer once you start on something to notice any difference.

Have you been tested for a Vitamin D deficiency? This is done with blood work. Another option is gluten sensitivity. It is possible to be gluten sensitive (me) without having full blown Celiac disease. The best and most accurate results are obtained using a stool sample. Either of these issues will also cause widespread pain and are common among people with FMS.

Your doctor certainly should have precribed medication for FMS. It is outrageous that he did nothing in that regard. If you were on medication, you could still do some of the things that you enjoy. Refusing to use medication to control your smptoms is only setting yourself up for additional problems. FMS creates a tremendous amount of stress on the body as a whole. I use a combination of conventional and holistic medicine to manage my symptoms.

You need to find another doctor ASAP. You can call your local hospital and ask for the physician referral service. Ask them for a recommendation to another rheumotologist and/or a pain specialist (I have both) with an interest in FMS. You can also go online to the National Fibromyalgia Association website and see a list of fibro-friendly doctors in your area. Suggesting that diet and exercise alone is going to fix the problem is ridiculous to say the least. Clearly, your physician is not up to date on the latest treatment protocols, doesn't believe in FMS or doesn't want to deal with it. There are still plenty of doctors out there including rheumy's that think FMS is a figment of our collective imaginations.

With regards to to diet, if you use an artifical sweetner (including Splenda) get rid of it. If you need a sweetner, use something made with the nontoxic Stevia plant like Sun Crystals or Truvia. You can find the latter in the grocery store alongside the other sweetners. Try to avoid eating deep fried food, lunchmeat or red wine (nitrates) as these items will also ratchet up your pain level.

You could purchase "Fibromyalgia for Dummies" through Amazon. Like the rest of the dummies series, it contains good basic information. Read yourself and pass it around among family and friends. I'd also like to gently suggest that you consider finding a therapist who deals with chronic illness. Many of us see someone and find the extra support very helpful. You can call your local hospital and ask for the physician referral service. They should be able to recommend someone. The other option is to use Google and see who pops up in your metro area.

The key to living with FMS is learning to be grateful for what you can accomplish rather than what you are no longer able to manage. You must learn to pace yourself and respect what your body is telling you. Learn to say "no" and not feel guilty about it. Break tasks down into more managable increments and/or not be too proud to ask for help. As you have already discovered, FMS is variable on a daily basis. This makes it very difficult to plan. You will have good days but you will also have bad days. Knowledge is power. Read through the blue boxes on the lefthand side of this page and look at some of the old posts to see how people manage this syndrome. You are not alone. I hope that my comments are helpful to you. Take care and God Bless.

 

Stacey373 - November 27

Hi LissB - Welcome to the forum! I just wanted to tell you to listen to Fantod...she's our "local expert" and her advice is very helpful. I understand you not wanting to take any prescriptions. but honestly, I don't think you can manage your symptoms without them. there are some natural medicines you can take that might help you. And most importantly you need something for sleeping. If you don't get good sleep, you will have more pain and feel worse. Not to mention, this illness can be mentally debilitating too and alot of us take an anti-depressant to deal with all of this.

You are going to have to figure out what you can and can't do....how much is "too much" and don't push yourself to do more. Take Care, Stacey ;o)

 

LissB - November 27

Thanks guys SOOO much :) I truly appreciate it, and you guys gave me some great tips :). I'm not sure if I was tested for vitamin D deficiency, I didn't get a copy of the results...but my regular Dr who did it said that all of my numbers were perfect and everything looked great, and he tested for pretty much everything from regular fats, cholesterol, etc to lymes disease and lupus. I'll have to call them Monday and ask if that was on there.
The Rheumatologist told me that most people didn't feel better with prescription medication...maybe I need to find a new guy...but I don't have health insurance or any kind of prescription plan...ugh...

 

kvc33 - November 27

Hi Newbie. I'm sure that getting this diagnosis is very hard for a young person but I honestly think it can be harder for someone who is older because by that time they usually have a lot of responsibilities such as children, a spouse and a mortgage. I don't know if you have any of these yet because you didn't say. I do believe that you need to be on some sort of meds to help you. Start out with natural things like Curamin. It is derived from the spice tumeric. Try hot baths and cold packs to see if they help your pain. Try a supplement called 5-HTP, it raises serotonin levels like anti-depressants do but without the side effects. You can not take both at the same time. Take short walks as this helps to keep the muscles limber and also raises serotonin levels. It is true that some people find that certain dietary changes and exercises are helpful and for others it makes them worse. Go slow and make changes one at a time so that you can assess your progress. You could try gentle massage or chiropractic care. Both help me but my fibro is mild and these things can make some people feel worse. If these methods fail you, please consider an anti-depressant medication.

 

Fantod - November 27

LissB - The rheumotologist that you saw should be reported in writing to the hospital system that they are associated with at the very least. They provided you with crucial misinformation. This doctor is a prime example of a doctor who does not want to deal with an FMS patient. We've all seen at least one. Save another FMS patient from seeing this ass.

Prescription meds for FMS DO help but they are not a cure all. Any relief is better than nothing. You need sleep to reduce your pain level. The other meds will help with depression and also pain.

In the interim, you can go to the Vitamin Shoppe and buy Calms Forte which is a homeopathic sleep aid. Another option for sleep is Melatonin which you can also find there or in any decent health food store. I use both. For pain, you could try Curamin which is a spice (really). It comes in a highly purified form in capsules for this application. I use a brand made by Terry Naturally. You can read about it online (we can not post links). I take two Curamin capsules a day for breakthrough pain and it really does help. Make sure that you understand and follow all of the directions. Bear in mind that these substitutions are not the same as a prescription med but they will help.

If you need help paying for prescription meds you can get help from the pharmaceutical companies. They all offer assistance for people who can not afford medication. You can find the information online. For example, Lilly makes Cymbalata. If you go on their site, you can find a voucher for a free thirty day supply. When you get some scripts, use Google to see what vouchers or other assistance might be available prior to filling them. Also, ask for samples. Most doctors have samples on hand will give them to you if you ask.

Use Google to see if you can find a free clinic in your metro area. Call your local hospital the United Way and see if they know of any free clinics or a rheumotologist who may be able to see you at a reduced rate or for free.

The longer a chronic pain cycle continues, the harder it becomes to manage or stop. You should be furious that the first rheumy you saw essentially wasted your hard earned money. Good luck to you and take care.

 

fishingflorist - November 27

just to add, don't be afraid to ask for samples. In the beginning you do try a lot of different meds so buying them all may get expensive. I have no insurance either. My rheumatologist is very helpful in that aspect. Don't be afraid to take meds, see where not taking them has you. They can only help.

 

Stacey373 - November 28

Hi again - I don't have insurance and haven't had it all year long. It got to be REALLY expensive with my meds and I have 2 girls who need ADD/ADHD meds too. (thankfully my kids have medical from the state now) Here's what I've learned to cut down some of the costs....

I pay cash for each doctor's visit. I get a 30% cash discount...so my appts cost me about $50.

Definitely ask for samples from the doctor...especially when you are first starting to take something new. The meds may not work for you or you could have bad side effects, so you don't want to pay a small fortune for meds you can't even take.

Ask the doctor or his nurse if the companies that make your meds offer help or free meds. I know alot of the major drug companies do offer help. Your doctor should have the forms for you to fill out and they can send them in for you.

the local pharmacy I go to (which is a small town Hi-school pharmacy) offers a prescription program. I paid them $5 and now I get my meds for about half the price....that helps ALOT!

As for going to welfare for help....please don't be too proud to do this. I wasted alot of money waiting until I absolutely HAD to get medical for my kids. If you have no money coming in at all...you might be able to get some help from them and at least get your medical paid for.

That's all I can think of right now...if I think of something else, I will let you know. Take Care, Stacey :o)

 

LissB - December 3

Thanks for all your help guys :) I truly appreciate it

 

Fantod - December 3

LissB - I just read another post from you saying that you were not going to use any medication. Personally, I feel that is very foolhardy given the amount of stress FMS places on our systems as a whole. A healthy lifestyle is a great thing but sometimes medical intervention is needed too.

The longer a chronic pain cycle continues, the harder it becomes to manage or stop. And, should you ever need to apply for Social Security disability, the consistent lack of treatment for FMS will not render a decision in your favor.

I realize that you are young and feel immortal. But life has a way of smacking you upside the head when you least expect it. I hope that you never get to the place that you need SSD but I, for one, would not rule out the possibility. Better to be prepared than have no options if the time ever comes that you need it. Take care.

 

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