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no help...fibromyalgia?
8 Replies
LadyTiger - September 2

hey.. this is going to be long but please stick with me.

Im a 20 year old female and used to be very active playing soccer and all sorts of sports and always on the go. A big perfectionist and over achiever. but the past 2 years or so things have changed.

I get dizzy everyday and blurred vision. This has been happening since I was young. I can just be standing or when i get up. Ill get very dizzy and blurred vision then it will black out and sometimes ill even pass out.

I cannot adjust it seems to temperature. when its a little cold ill be freezing and everyone else is fine. when its warm ill be overheated and get the dizzyness etc and pass out. and almost like 98% of the time my hands and feet are like icecubes.

I have lower back pain so bad that i have quit several jobs because of it because it hurts so much i cant stand or bend over and sitting doesnt help that much. I also have pain in my upper back and shoulders, neck and back of head.. i cant ever lay on my stomach because my lower back will hurt to much and my neck will hurt so bad and get stiff i cant move it. this is an everyday thing..

my chest hurts so bad that i cant move my upper body. It hurts right where the ribs connect to the middle bone. the pain hurts so much it goes straight to my back and shoulder and under my upper arm.

I have hip pain so much i cant move or turn over in bed sometimes as well.

I sleep but it seems that i dont. I sleep 8 hours but am always tired when i wake up and alll day long. i just want to sleep all the time.. most of the time ill wake up out of a deep sleep for no apparent reason but only for a second and go back to sleep. i dont want to do anything. I feel i have no energy to even put clothes on sometimes. I literally hve to force myself out of bed to do something and even workout just a little. i feel weak most of the time as well.

this all is very upsetting to me.. I just sick of being in pain everyday. ive been to more than 5 doctors and they dont do anything. ive had about every test done from xrays to blood tests to ekg's.. i dont know what to do anymore. they say they cant find anything and my heart and everything is fine.. i even got my kidney and liver functins tested..fine. im so frustrated and depressed. this isnt me. i then researched and found this and it fits everything to a T. i have not been tested for this nor did a doctor ever bring it up. do i have fibromyalgia?? please help.

 

LadyTiger - September 2

I forgot to add some things..
I often wake up in pain and cant sleep or if i do is off and on. when i wake up im stiff.

yesterday i woke up at 3 am with real bad chest pain. same spot where the ribs connect. i couldnt move, or get comfortable and barely slept. its hurt the whole day, alot in the morning, by 2pm its quited down some and then by 10pm was hurting alot again.. and its 12:42am now and it stiill hurts.

another thing is when me and my bf (i dont mean to bring this up) but when we have intercourse my legs hurt so bad and i cant move thm. from the hips down. its frustrating. im sure everyone around me is tired of my complaints and seeing me so miserable all the time.. i know i am. i cant take it anymore!! i cant enjoy anything that i used to.. i dont evn hang out with anyone anymore and if i talk to someone its breaf because my body just feels so weak and just wants to lay down..

 

cincin - September 2

LadyTiger welcome to this site. You have detailed absolutely everything that I and others have experienced. It certainly sounds like this is what you have and I cried when I read your post because word for word almost explains me and I truly understand and you are so young. I am new to this site(by a couple of weeks) and have been given so much information and support-just knowing that others understand where you are coming from has been uplifting.Go back to your Dr. and discuss it with him/her, get a second opinion on it if you have to(get it confimed first-that is half the battle). There are meds out there for it, they help some sufferers and others like myself have trouble tolerating anything. It'll be trial and eror on your behalf to figure it out. Keep reading on this site there are alot of good ideas about diet, exercise, support. Once a few members pick up your post they are a fountain of written info on this affliction. Keep reading and keep coming back. Best of luck to you.

 

January - September 2

Hi Lady Tiger, and welcome. Yes, you do sound familiar… but fibromyalgia is a syndrome - which means it is a label for a lot of different, similar, linked symptoms. These symptoms can have different root causes in different people. What you need is a good diagnostic workup, and you may have to argue for that. You might want to run off some information and take it with you to your doctor to explain why you want certain tests done. Try to find a good rheumatologist who will work with you. Or a good primary care doctor who knows about fibromyalgia and will read the information you take in and run the tests you ask for.

First and foremost, educate yourself! (Read Fantod's standard welcoming posts - she lists where to call for good referrals and has a good beginning crash course in fibro online here.) Just go to the blue search box on the right, plug in "Fantod" and hit search. If you look through some of her posts, you will find some very long ones about what to do when you're just confronting this disease. Get the book Fibromyalgia for Dummies.

My suggestion to YOU, right up front, would be to get a sitting MRI to find out what is going on in your lower back (and maybe the rest of your back and neck) first. That will rule in (or out) a back injury. I have terrible low back pain; it's because I have injuries that I didn't know about - some occurred back when I was a teenager. I also have neck problems from a car accident 30 years ago. If you have back injuries, they can cause all kinds of strange referred pains - you might have problems all down your spine. So for a full spinal MRI, ask your doctor, or get a referral to an orthopedic doctor. I think a sitting MRI is BEST, it shows how the spinal column squashes down when you are upright. (It was the only test that CLEARLY showed my back injuries.) Pain medication can treat back injuries, if you are a good candidate and not an addictive personality. If they suggest surgery, and they will, do your homework. Most of the people I've talked to who had surgery are still in pain, sometimes worse pain, and some are paralyzed. So think it over. As for the chest pain read about "costochondritis" on here or google it.

Most doctors will try to put you on antidepressants like Cymbalta now, but before you take them, please, please do your research and know that you might have a seriously bad reaction to these drugs, and they are very hard to get off. You have to find a drug that works well with your body and we are all different. Read the posts about drugs on here.

ASAP, you need to get your sleep issue addressed - you can read about it here too. Most of us don't sleep well and that ties right into our pain and fatigue problems. You might need a prescription like Ambien. There is a supplement called melatonin that works as well as prescription meds for many people. Check all this over with your doctor, to make sure your body can tolerate these things.

There seems to be a "fibro personality" type - I think. A lot of us were overachievers who pushed ourselves hard. Along with this goes an extreme sensitivity. We feel feelings more deeply, and we feel pain more exquisitely. Guess what happens when you burn the candle at both ends…? Sorry, but if you have this disease, you have to slow down, figure out what's important to YOU, and take good care of yourself. Sometimes you have to take a long nap in the daytime, but you have to do it to stay well. When you do this, some people will call you lazy and give you a hard time. You will have to decide who to keep in your life, and who to kick out. You need to take care of YOURSELF, and you need rest to heal.

For a lot of us, going gluten free means we get much relief from our pain (unless it has another physical cause like arthritis or spinal injury, etc.). I used to feel like I had the worst flu in the world every morning - until I went gluten free. After a year, the overall body aches were gone. For me, the issue was gluten (which is basically most cereals and flour). There are other things people are allergic to also, so you will have to find a place that can test you for food allergies.

A little appropriate exercise is good, but don't push yourself. And if you aren't taking a good multivitamin and multimineral, you might want to start now. I recommend the "better" brands that are free of allergens like soy, wheat, gluten, shellfish, etc. Twinlab or Solgar… there are many, you can find them in health food stores. Slowly, one at a time, you may want to try some of the supplements used for fibromyalgia and see if they work for you. (I found SAM-e to be very helpful but that doesn't mean it will work for you.) Dr. Jacob Teitelbaum's book "From Fatigued to Fantastic" is a great help! Dr. T. has fibro himself, so he's a good resource. You can google him and contact him online.

Sorry to hear you are so upset about this. Please try not to be, because you CAN get better, that's the good news! You can get MUCH better, please believe me. The bad news is, for most of us, we didn't easily find a doctor to make us better, we had to fight and do the work ourselves, even though we were sick and exhausted. Many doctors think fibro patients are just depressed whiners looking for pain medication. I remember back when the Lyme Disease Community came together decades ago to demand research and treatment. They are still fighting for it. But back then, when they first started, most doctors "didn't believe in" Lyme Disease! I think our community is in the beginning stages of the same kind of fight. WE will find a cure for this thing by sharing with each other.

RIght now, I hear that you are in pain, exhausted and frustrated with a medical runaround that finds nothing. We have ALL been there, which is why YOU have to be your own best advocate. Start keeping a journal right now (maybe several notebooks - one by your bed, one in the kitchen) and take notes on your sleeping patterns, how you feel in the morning, when you hurt, what activities set off your symptoms, the food you eat, any supplements you are taking and the effects, etc. A pattern will start to emerge. This journal will be your "proof" to show any doctor you are working with what you are going though. While you're researching online, run off information that you might want to show your doctor - some of them appreciate a patient who is informed, it saves them time.

Hang in there, and start working on healing today. And come back with any questions you have on the general discussion board. Wishing you the best.

BTW, I don't know how you feel about this… but if you are in a medical marijuana state, you might look into treating your sleep problem (and maybe some pain issues also) with medical marijuana. You don't need much to get a good night's sleep. See the posts on the drug discussion.

wow… I think I'm done for today! : )

 

lucky13 - September 4

I posted in the general discussion, but now that I am reading more detail in this post I want to reply here to.

You need a good rheumatologist, one who understands fibromyalgia so you can get a diagnosis. The treatment usually includes an antidepressant, it is believed that fibro is caused by or made worse by a chemical imbalance in the brain which the anti depressant can help with.
So step one is getting a diagnosis and start treatment.
I have bad lower back pain to, my rheumatologist prescribed me a tens unit and it has been a big help to me.
As far as the intimacy thing, I have the same problem with hip pain, and like you I can't move after-wards. So you need to get creative, I have wrist pain to so being on my hands and knees aren't an option, so (if TMI sorry) I use a bunch of pillows under my torso/chest to help prop me up while hubby is behind me. This allows my hips to not be spread to far causing the extreme pain.
As far as the sleeping, the Dr can prescribe you something to help you sleep and to help with pain, I chose not to use either because I have 4 kids that might need me in the middle of the night, but the option is there if needed.

Until you can get into a good Dr you could try Tylenol PM to help you sleep, as far as OTC meds, Tylenol tends to work better for fibro pain then Advil or Aleave.

Your young, don't get discouraged, fibro is controllable, you just have to find the treatment that works for you. Most Dr.s perscibe the meds that are FDA approved for the treatment of fibro, but there are cheaper options (if you don't have ins, or good isn.) I take Celexa and have found great success with it, and it has a generic that only cost me $5 a month.
You can also try hot/cold therapy, heating pads for your back and shoulder pain may help, or going from cold therapy to hot therapy may confuse the pain receptors, easing your pain.

Do your research, you have to be your own advocate. You have to find a Dr who is knowledgeable and that will listen to and address your concerns. Take suggestions for others who have fibro on what has worked for them and try that, anything to lessen pain is worth it.

Also start keeping a journal, in it keep what times you went to bed, how you slept, how you felt when you got up and how you feel through out the day. This will help when you do find a Dr who can help you.

Good luck.

 

LadyTiger - September 5

ive been taking vitamins.. a good brand but they dont seem to do anything to help.

im not sure about taking sleep meds right now because im afraid they might have side effects..

i have to wait for my med. insurance to get turned back on which should be within the next couple of days so i can see my doctor. what type of info should i print off to show her?

as for diet i eat healthy. i sometimes have to force myself to eat because i never seem to have an appetite. and some foods when i eat make me feel sick to my stomach. like chicken or certain other things. i dont eat breakfast because i feel like crap and cant eat without feeling sick and no appetite.. i dont eat cereal or sweets, they make my stomach upset too.

 

lucky13 - September 6

I would suggest making a list of all the symptoms that bother you and how often. Without list in hand it can be easy to forget to mention something. Also while your waiting to get into a Dr you could keep a journal to take with you so the Dr can see what your doing through, how intense and when.
As far as sleep meds, I don't take any perscription sleep or pain meds, I have 4 children to take care of I want to be able to wake up at night if needed. But when i do need a little help I will take Benydrl or Tylenol PM for sleep. i will also listen to soothing music. When it comes to pain, for OTC I use Tylenol Arthritis when absolutely needed.

 

January - September 6

LadyTiger, Glad to hear you are careful about taking prescription meds. Some people do well on the typical meds they prescribe for fibromyalgia, but in general, about half of us do badly and have bad side effects or drug interactions.

BEFORE you start taking any kind of prescription medicine, talk to your pharmacist - a PhD pharmacist is best. (THEY understand the drugs; your doctor may only know what the drug salesmen tell him, and remember - they just want to sell more drugs. It is possible some suggest doses that are too high, or downplay the side effects. They are salesmen, not doctors.) Type the name of the drug in the google bar and read up on what you find. If there are words you don't understand, use the dictionary on your computer, or type the word into google, and it will explain it to you. Drugs (dot) com has a good website, they have simply written information at the start, but if you scroll down to the bottom, they have information "for health professionals." THAT is where you get the best information on all the nasty side effects and interactions. Your doctor will not have time to warn you about all these things, so you have to educate yourself. This is another example of information you could print off and show to your doctor, if you do take prescription meds and have new or worsening symptoms.

For example, if you are prescribed Lyrica, you should know that in a lot of people it causes rapid and stubborn weight gain, swelling, dizziness. (Do you want to gain 50 pounds??) Prozac lowers the potassium in your body. Some of the antidepressants may cause cataracts or eye trouble. Many of them can cause serious birth defects if you become pregnant. The dry mouth almost guarantees you will need extra dental work. If you are prescribed Cymbalta, before you take it, you might want to read the thousands of horror stories online in the forums, where people describe the bad side effects it caused, and for some, the withdrawal symptoms are so bad, they can't stop taking this drug. You will probably be offered Cymbalta for fibro - you should know there are people working on filing a lawsuit about it also.

Any drug, even over the counter drugs, can have side effects and interact with other drugs. (Even a small amount of Tylenol harms your liver, just a little bit. The more you take, the worse it gets.) You should take a list of drugs and supplements to your pharmacist and check over what you're taking. Find one pharmacy you like and make friends with the head pharmacist! They are there to help you with drugs. It's usually a trade off - we decide to risk the side effects to get relief from our symptoms. Just know what the facts are!

There are a lot of supplements that aren't so potent, and they can help you feel better, but you still need medical guidance when using them. (Melatonin is a supplement that helps you sleep.) A healthy diet, a little exercise, a few low dose drugs that have been on the market for decades (so they have a reasonably safe track record) can also help you. So can a heating pad, massage, acupuncture, etc. You will find many ideas on this website.

And another note - if you are in a medical marijuana state - that helps with pain, sleep, nausea and appetite, when used appropriately.

 

Nee_ster310 - September 11

A doctor refereed an all natural product that was not a prescription. She said this product has the highest antioxidants in the world. Its called Kyni. Well, I and my mother tried it at the same time with in the 2ed week I started not feeling the pain. For my mothers fibro it took a month and a half. Within the 3 weeks my mom started sleeping and it has been 14 years since she slept thru the night and now she is snoozing away. I asked the doctor if I can give this info to friends and family and she said its for everyone who would like to order. I call Kyani's customer service at #208-529-9872 #283378 my mom orders online at Kyani.net and give them the docs Distributor #283378 The three product that Dr. Baird let us know about is Nitro Extreme, kyani sunrise and kyani sunset. I just went ahead nd got my own membership #.This stuff truly works and wished that all doctors knew about this. Well Rahin, All I can say is try it for yourself. I just realized that there is money back guaranteed within 30 days. TRY IT TRY IT TRY IT... Its mazing

 

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