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newbie wondering if it's fibro?

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Posted 10/1/2010 1:36 AM (GMT 0)
Hi all,

you seem to have a very warm friendly forum.

i am wondering if i have fibro. my doctor says no but i seem to have some of the symptoms. (duration in parens):

sound sensitivity (hyperacusis) - can tolerate normal conversation but not, say, party music going or in a noisy restaurant (2.5 years)

jaw pain (switches from side to side) -occasional, plus ear pain(2.5 years)

serious pain in one si joint that rotates to butt (glutes), hips, trocanter (recently, last 6 months) -- like a knot that can't be loosened up.

knee pain inner and outer, no arthritis showed up (4 years)

tinnitus (4 years)

migraines (getting more troublesome) - 25 years

lower back pain readiating to midback by sitting too long (ten years)

shoulder pain (during the winter, or when i try to lift things the wrong way)- on and off for a long time

hands becoming stiff (was treated for trigger thumb twice now with cortisone, worried that will need surgery) otherwise, last month, so this is recent...

depression (on and off, five years)

etc ....

i fell about 8 months ago and landed on my si joint, which already was problematic. now the pain is a daily issue, but it rotates a bit, especially in my hips/back/knees.

i am doing prolotherapy, which has helped. but i never seem to have recovered from the fall!

the pain rotates. I do not have much sleep disturbance or fibro fog. tho i take 2.5 mg valium at night to sleep plus GABA.

anyway, it seems like over time the list gets longer and longer!

i am a little scared that i may be in some development stage.

ps i just got blood tests for RA. awaiting results.

can fibro be progressive like this?

exercise is hard for me, walking okay but other things can tweak me.
gee i miss the days of going to yoga classes! how i used to complain about having to exercise, now that would be such a luxury.

i tested neg. for lyme...

thanks, in advance,
lotus
Posted 10/1/2010 2:00 AM (GMT 0)
Hi Lotus and welcome to our fibro family, as you will see we have a great group of people here. I have a question for you. Why is your dr. ruling out fibro if they arent finding any other reasons for all your pain? Does your Dr. believe in fibro? If they arent finding anything else that it could be you sure have alot of the symptoms that the rest of us have. If it does not turn out to be RA the next step you might want to take is to find a rheumatologist that believes in fibro. Good luck and I will be praying that you get answers soon. Please keep us updated on how you are doing and feel free to ask questions, vent if you need to or offer advice to the rest of us.
Gentle Hugs
Shirley
Posted 10/1/2010 2:13 AM (GMT 0)
Lotus, I was tested several times over a 25 year period. I was always negative for RA or any of the other fun stuff. Doctors just shrugged it off. No one seemed to be able to connect the "dots". Then I moved and found a wonderful doctor who listened to me. He was the only one who tested my "points". 16 out of 18.

It is important to find out if your doctor believes in and treats fibro. Some do not. If yours doesn't you might want to find one who does.

This forum has been wonderful for me and I am sure you will gets lots of answers and support here.

Check out Fibro 101--lots of info here. You mentioned exercise and for me it really helps to get moving but I always stretch afterwards or else I will stiffen up something horrible.

Glad that you have joined us. I'm sure others will be along to welcome you.
Posted 10/1/2010 3:12 AM (GMT 0)
Hello Lotus,

Welcome. You sure do sound a lot like me! Right down to the hearing sensitivity, the problem with your SI joint and shoulder pain from lifting. And of course, the wishing you could exercise!!! This is one crazy disorder, I've been diagnosed for almost 20 years and it still keeps me guessing. I agree with Shirley and Puppylover - a different doctor might disagree with this one.

Debbie
Posted 10/1/2010 12:51 PM (GMT 0)
Sounds alot like me, and I'm wondering the same thing! Hope you find some answers soon!
Posted 10/1/2010 2:48 PM (GMT 0)
I am in the same situation as you and i have been dealing with thsi for 2 years I am thinking of looking into going to another doctor, it is very frustrating hang in there that is really all we can do is hang in there and hope! Good luck to you!
Posted 10/1/2010 4:11 PM (GMT 0)
Hi, Lotus, and welcome!  I'm glad you found us and joined the family!

 

Well, a lot does sound like fibro BUT many of fibro's symptoms are also symptoms of other illnesses that can be treated.  You need a good doctor that treats fibro patients.  They should run a battery of tests to rule out the other illnesses before a diagnosis of fibro is given.

 

Movement is good for fibro.  Actually yoga is good for fibro, too.  You do need gentle stretching and gentle exercises like walking and swimming because they do help a lot.  With yoga, you will probably have to start out slowly again.  Let your muscles get used to it.  Pacing yourself is important so you don't end up in a flare.  Here is some yoga flexibility ideas.  You might already know about this but just in case I'll post a link.

 

https://www.msu.edu/~medyoga/flexibility_series.htm

Pain is a reality for fibromites.  I know I'll be in pain.  That's a given.  BUT how much pain can depend on if I'm in a flare, if I have maintained control of my pain, if I have kept moving, and most importantly...my attitude towards this illness.  I don't let it run over me like a steamroller.  I face it head on and work around it to do the things I enjoy doing.  If you enjoy yoga, maybe the above link will get you started again but...pace yourself.  Start out slowly and gradually work into it.  You might not be able to do everything you used to, but you can still enjoy yoga!  Your body will tell you when it's had enough so really listen to it.

 

Be sure to check out Fibro 101.  There are links to good info about fibro and you will learn a lot.  There are links to What Else Could It Be, Symptoms, and also links to vitamin supplements and nutritional supplements that have helped some on the forum, including me. 

 

Don't hesitate to ask questions.  We are pretty good at answering them quickly.  I hope to hear more from you soon.

 

Sherrine

Posted 10/1/2010 4:44 PM (GMT 0)
HI everyone,

thanks for answering me, especially with thoughtful replies and so warmly, i am touched!

it seems you recommend i see a fibro doctor specifically. there is one nearby, i checked. she uses the guai protocol, i noticed. probably other things too. of course, you have to pay out of pocket for this!

it is just slowly dawning on me that "houston, we have a problem"
... i e my problems are slowly increasing not resolving.
the burden gets heavier not lighter.

it seems that treating this can make things better? but that also, there is no cure.

i have done prolo as i said, and found that helpful. but it takes a long time and i am still not where i want to be. but at least i can truly endorse that. it's made a big difference. the knees responded quickly and i am able to walk much better now, he also did my hips a few times, so i am not pain free but way better!

i would like to alleviate what is going on but am terrified of drugs like lyrica and savella. i am normal weight and also fear withdrawal if these things don't work.

i will try to read through some of the posts and stay connected.

i've already gotten some confirmation that this might be fibro and that i should seek out a fibro doctor.

however isn't that kind of like going to the person that tells you what you want to hear, sort of like "lymies" who go to a lyme dr. where as far as i can tell, everyone with the least problem possible has lyme!

(i already lost a friendship over this. i got the $1100 test as she would not ever, ever, be with me without making that the entire topic of conversation.)
she has lyme, so to her, everyone does.

refreshing to see openmindedness here.

anyway thanks again.

warmth and friendliness are so important when dealing with this and also not feeling alone.

i can't be the only one who gets pretty frustrated by the struggle! OMG, sometimes, i wonder how i am going to make it?

in fact with a little reading i (as well as others) can always see that no matter how bad, others are struggling more.

I pray for all of us to to get better... no matter where we are on the "chart"!

warmly,
lotus

ps i will check out fibro 101 and the yoga exercises.
Posted 10/1/2010 5:34 PM (GMT 0)
Lotus, I suggest you see a board certified Internist or a board certified Rheumatologist for fibro...and make sure they treat fibromyalgia patients.  This would be covered by insurance, too. 

 

"Fibro" doctors can really be a scam sometimes.  I'm personally wary of them.  Here is an article on the Guai Protocol that would be worth reading and investigating before laying down those hard-earned dollars.  Guess I'm just leary.  I've seen too many coming on the forums touting a cure.  If this truly worked, we would have seen this all over the news by now!

 

http://web.mit.edu/london/www/guai.html

 

Sherrine

Posted 10/1/2010 8:17 PM (GMT 0)
thanks, Sherrine,
fascinating article on guai...
wow, so much to take in!
i will take you up on your suggestion to go elsewhere for a second opinion,
thank you and everyone else who has responded,
it means a lot to me to go in the right direction,
and also, just to feel like i am going somewhere with all this.
ps do you know anyone who has benefited from iv magnesium?

xoxoxoxo
lotus
Posted 10/2/2010 1:09 AM (GMT 0)
I have been dealing with the FM dx for probably 15 years. several times my doc has reminded me "dont blame everything on fibromyalgia". Your symptoms do sound like FM but may also be symptoms of other things. By doctor definition (if you ACTUALLY find a doctor who believes there is such as thing as FM), you do have to have 11 out of the 18 "trigger points". Some days I have all 18 other days I have 1 or 2. Look the trigger points up on the internet. This disease (lovingly labeled as a syndrome:) can be worse than many other diseases that could kill you. We aren't gonna die from it, but many days I wish I would. I know it sounds crazy but if I had cancer or some other devastating illness people might actually understand the pain. But because FM cannot be seen on an xray or blood test and alot of people (like myself) dont really "look" sick then we are labeled as hypochondriacs or complainers. Each person's symptoms are different. I have joint pain with no swelling, fever, flu like feeling, depression, back pain, sore skin, sleep problems, etc....i do also *usually* have the trigger points.

If you can try to swim or at least be in a swimming pool several times a week. this helps me relax and exercise a bit. dont overdo the exercise. it makes you much worse. try natural sleep aids or ambien (prescription). FM is also considered a sleep disorder. because of pain we cant really fall into deep healing sleep needed to repair our bodies. its a viscous cycle. make sure you have a firm bed with lots of pillowtop. this helps me. basically all prescribed drugs i have taken for pain helps for about 2 weeks. cymbalta was a miracle drug until it started giving me restless leg. i quit taking it because of that.

AVOID STRESS....AVOID STRESS....AVOID STRESS....AVOID STRESS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

^^^I know hahahahah on the avoid stress....but it does amplify my flare ups BIG TIME~~~

Also I get a flare nearly every menstrual cycle...

find a good rheumatologist who is sympathetic with FM patients.
Posted 10/2/2010 1:13 AM (GMT 0)
With regards to testing for RA, can't your bloodwork come back false negative?
Deb
Posted 10/2/2010 2:21 AM (GMT 0)
Lotus,

Out of curiosity - what is prolotherapy? That's one I haven't heard of.

Debbie
Posted 10/4/2010 12:26 AM (GMT 0)
ShelETN,
I would love to go swimming... however, I've been warned that the chlorine in most pools will do far more harm than good.
Your take?

Acheybody,
prolotherapy has been very helpful. You can research this on the web, possibly start with getprolo.com.
it's a series of injections that trigger inflammation (yikes!!!) ... but... they make you get stronger and also often take away the pain for a while in the beginning and are a circuit breaker with way more teeth, ultimately, than cortisone or simple trigger point injections... if it's appropriate for your circumstances.
i've been doing it since Mar. and it's been a real lifesaver. i will have to do more, since back pain goes back many years. it's been very helpful for knee pain, starting with first injection, helped my thighs and knees and hips alot.

...Lotus
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