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Fibromyalgia
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Posted 2/23/2010 11:27 PM (GMT 0)
Hi all! I'm 23 and female, have always been healthy until about one year ago. I began running a constant low grade fever after a bout of stress and several random infections. Began developing pain and other symptoms within months (headaches, insomnia, concentration loss, abdominal pain over spleen/liver). Have had so many tests to rule out infection/rheumatoid problems/don't know what all, but everything has been normal. Last time I went to doc, he suggested fibromyalgia and will send me to a rheumatologist if I want to go.

My question is this: when I read about fibro, it's always described as severe/excruciating pain. My pain is more irritating than anything because it won't stop, no matter what pain meds I've tried. But it isn't severe. I get pain near my hip joints and in my back. Headaches that last weeks. Pain comes and goes without warning, and just when I think I can't stand it and finally go back to the doctor, it goes away on its own. But as I said, it is not something I would describe as severe - just irritating.

What about you guys? Is your pain always more than you can bear or is it sometimes mild? It is so severe that it makes you cry or is it just so annoying that it makes you pull your hair out?

Thanks!

Posted 2/23/2010 11:47 PM (GMT 0)
Hi Libertyforlife,

Welcome to the HealingWell Fibromyalgia forum! I am so glad that you have joined us.

My pain is more of the nagging pain that you are describing, though it gets worse. I take pain medications though and that seems to keep it to a minimal. If I wasn't, I would imagine that it would be a lot worse. I think we all have it a little different, though some of us have severe pain and others don't. It is something that is unique to the individual I think. But in the beginning, mine was a lot worse, until I got it under control with medications.

Please do check out the fibro101 thread. It is the second thread on the forum. You will find a lot of helpful information there.

I am glad that you have joined us and I am sure that you will get a lot of helpful responses. Take care.

Hugs, Karen
Posted 2/24/2010 12:22 AM (GMT 0)
eyes cool blush hi Libertyforlife! welcome to yhis wonderful site! i had spinal surgery last jan and was diagnosed with this horrible crud in april. i hate to say it but my pain has gotten worse..especially in wet weather. i was taking lyrica but did not feel the minimual relief was worth the cost. i went to a new dr. (an internist) last fridayand he gave me a starter pack of savella. i also ordered true calm online last night. i pray the savella at least helps. yes my pain does bring tears pretty often. i take hot showers which help but the water is painful most days. i hope your pain stays just irritating and not severe. are you taking any meds? take care. i think you'll be happy you came here...i am.. Donna
Posted 2/24/2010 12:54 AM (GMT 0)
Welcome Libertyforlife, Glad to have you as part of our group, their are alot of great people on this sight. I had fibro for several years before i was diagnosed in june, I started out with minimal pain in my back, hips, shoulders for a year or so, but it got worst for me in the last 10 months. I am doing better at this point but i had to make alot of changes in my life. I had to learn to slow down and pace myself, exercize a little every day, and find the right meds that worked for me. Some days are tolerable and others are really bad. I just learned to take one day at a time and deal with it as it comes. Everyones pain is different, and what pain med might work for one might not work for another. I am so glad that your pain is tolerable and with the right meds yours could be even better. Keep reading and posting and you will learn alot from others that have gone through it for a while. Glad to meet you
Posted 2/24/2010 4:28 AM (GMT 0)
Wow! Thank you guys so much for the quick and kind responses! This really is a great group of people - I can actually feel how much you care about other (even anonymous) people who share your condition.

I am not taking any meds right now - I tried Mobic for a little while (did nothing) tried Flexaril once (made me high as a kite and didn't help the pain). I don't take OTC pain relievers because they don't help either. The only thing that has worked properly is the Cephadyn I was given for headaches. Relieves the pain for an hour or two, which is something. And lately I've been taking Unisom to sleep since I think my birth control pill is making my insomnia worse. I was taking 5-htp, but it quit working unfortunately.

My doctor talked about Savella with me and said that he had sample packs, but didn't want to put me on that until we were sure of what was going on. Basically, he asked me to read up on fibro and see if it sounds like what I am going through since nothing else shows up. Thank goodness I have a doctor who believes this is a real problem after a year of negative test results!!

Willowsgrandma - please let me know how you do on Savella. I've heard both good and bad things about it.

Overall, I can't complan at all!! I'm very blessed to have minimal pain and am in a situation where I can get all the rest I need (though I'm finding it hard to make myself rest!). I just want to understand more about fibro before I talk to my doc again. I feel like even if it is fibro, I don't know that I'm ready to go on something like Savella unless the pain gets worse. As it is, I can manage. I would love to know all of your experiences with meds and whether you think they are worth it sometimes. I just wish I could take something OCCASIONALLY that would work when the pain gets really bad...
Posted 2/26/2010 2:08 AM (GMT 0)
hi there. have you been checked for lyme disease>? just one mor ething to get ruled out.

my fibro was caused by lyme they think. my pain is something awful! I take oxycodone and fentanyl patches. I also take cymbalta.

I tried savella and it made me so ill I landed in the ER, lyrica made me suicidal. so far cymbalta has been good.
Posted 2/26/2010 5:39 AM (GMT 0)
Hi and welcome to the family!

As you have already seen, pain from fibro can range from mild to severe and that's even within the same person. ;-) Learn all you can since you will find that the majority of doctors either won't or don't have the time to tell you everything you need to know. This is a "self-help' disorder and by sharing with others you can find what works well for you. Do listen to your doc but the day to day stuff comes from your own learning.

Do be wary of those who promise a cure...there is none. Stick with good science and research. There are a lot of hucksters out there ready and willing to take your very last penny. Don't be afraid to ask any and all questions you want...we all started out knowing nothing about fibro but it doesn't take long to find out what works best for you and to educate your doctor along the way.

Warm hugs,
Chutzie
Posted 2/26/2010 1:38 PM (GMT 0)
I have been checked for Lyme Disease and was positive and treated for it. The thing is that I was tested at Vanderbilt and most of the doctors there believe that Lyme doesn't exist in Tennessee where I live. It's odd that I was tested for it at all, but they ended up saying that my positive was slight and they treated me as a precaution. However, my regular doc (who used to work for Vanderbilt and has his own clinic now) tells me that he has seen Lyme here and that it was very possible that I had it. Perhaps it caused this flare up in me too?

I also had a positive monospot (though I had mono 6 years ago), and was really really sick with something in January of last year. I understand that stress or illness can cause fibro. Seems like a good possibility.

I never had any of the swelling in my joints that comes from Lyme Disease. My joints hurt, but the pain seems to actually come from the point that the muscle connects to the joint or bone (is this something like myofacial pain?). I actually had a chiropractor tell me that the place I pointed to at my hip was the tensor facia lata - the tissue that connects the muscle to the bone.

Because my ANA and rheumatoid factor are normal and there is no swelling or redness in my joints, fibro seems like a possibility. I wonder if my otherwise healthy lifestyle is keeping it under control. I eat lots of fruits and vegetables, lean meats, limit sugar, never drink cokes and get at least a little exercise - maybe I'm keeping it from being very bad? I have actually noticed that the pain comes on or gets worse if I go for weekend eating junk food.

I'm just still not convinced that I have fibro because whatever is going on with me seems so mild. But at the same time, it is enough to cause problems in my life and has been going on for so long now.

The main thing that has concerned my doc is my constant fever. Has anyone else experienced chronic fever?

Thank you all so much for all of your answers and please continue to post! I appreciate the information so much as all of you can understand, I'm sure!! I have read through the resources in Fibro101 and am continuing to learn. Thanks again!!

libertyforlife

 

Posted 2/26/2010 2:14 PM (GMT 0)
a few years ago I had about four weeks straight where I was running a fever from 99.0 to 101.4 .  I went to the doctors several times while I had it because it wasn't going away.  We never did figure out why. I am not supposed to work if I am running a fever but 4 weeks is an awful long time and I think i would have lost my house had I not just went to work and not said anything about it.  I wasn't feeling all that great with it and seemed to not have energy almost like the flu but the doctors couldn't find anything wrong except for my sed rate being a little high which that is still high and I am not running a fever now.

Posted 2/26/2010 6:21 PM (GMT 0)
libertyforlife-

I am not saying all fibro is lyme, however Lyme can idunce fibro. 3 weeks treatment for lyme is not usually enough. Lyme does not stick within boarders of states. Every state of the us has reported cases of lyme. I would hop on over to the lyme forum here and get the name of a lyme doctor near you. Not everyone gets swollen joints or pain at all, because there are over 300 strains of lyme known, they can all react differentlyand differently in each person. you do not need to remember a tick bite or a rash to have lyme, only about 50% of folks ever see a tick on them!I would encourage all fibro, cfs, MS patients get tested for lyme through a reputable lab such as Igenex in CA. being slightly positive for lyme is like being slightly pregnant. If you can get a copy of the test results do so. ALso ticks carry are likely to carry more than just Lyme disease. YOu can get infected with multiple diseases with the same bite.. A low grade fever is a symptom of something called babesia. it is similar to malaria, and needs to be treated with special meds. I am not a doctor so you should speak with your pcp or a lyme literate doctor.

good luck and I hope you investigate lyme a little more. The forum here is great.
melissa
Posted 2/27/2010 1:49 PM (GMT 0)
For me it really just depends on the day. Some days are ok where the pain is there, but not too bad. Other days are so bad I don't want to get out of bed. Some days the pain is bad, but not so bad I cry. Someday, the pain is annoying because it is there. LOL. It really just depends on the day for me.
Posted 2/28/2010 1:43 AM (GMT 0)
about Lyme - My regular doc said that he has definitely seen Lyme in our area, contrary to what Vanderbilt says. He said that he's seen symptoms go on for a couple of years after treatment, and that could be what I'm experiencing. The problem is that until recently, neither of us knew of a doctor in the area who knew much about Lyme. But I think I've found one that has more training in it than other doctors around here and I'm working on giving him a try. It would be so good to KNOW and at this point.

This morning I woke up and my entire rib cage hurts when I breathe from back to front. Feels like someone has been beating on it or something and I can't think of anything I did yesterday that could have caused it.... sound familiar?
Posted 2/28/2010 2:24 AM (GMT 0)
I think that is called costiochondritis maybe??
Posted 3/3/2010 8:55 PM (GMT 0)
My pain can be intense, or more often it's just annoying and "always there" sorta like a thought in the back of your mind.  Sometimes I can totally ignore it and get lots done, but when it's bad, for example, a nasty headache or nerve pain, I resort to meds like Neurontin.  Otherwise I use things like heated (microwavable) items, heating pads, stretching exercises, an occasional Tylenol, or pain rubs.  Hope you're doing well today! smile
Posted 3/3/2010 10:39 PM (GMT 0)
WillowsGma: I use True Calm and have had real good luck with it. It works better than anything I've gotten from the drs, and
believe me, I've tried just about everything. I use herbals for most everything and today picked up a hemopathic for the sciatic.
I've been driving and the baker's cyst is so swollen it's pushing on the sciatic and talk about living hell. I took 2 of the hemopathic
and the spasms down the leg and into the foot stopped. shocked Tonite I'm going to start a NOW brand calclium/magnesium/
vit D/zinc combo for nerves and bones hoping it's going to tame the sciatic some. I started on massive bromelain last nite for
the swelling of the bakers cyst as it's an anti-inflamatory. Mixing that with the Super Cissus and Bio-Sil I'm hoping to be back
on track in the next week or so. Can't repair the damage in a day. shakehead

Nana Monster
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