Home The Book Dr Articles Products Message Boards Journal Articles Search Our Surveys Surgery ESWT Dr Messages Find Good Drs video

fibromyalgia -- barbara s. and others with this condiition

Posted by nancy s. on 5/02/02 at 15:50 (082160)

i'm wondering if anyone diagnosed with fibromyalgia can tell me whether i should see a doctor and get tested for this (i have no insurance).

brief history:
* ten years ago i supposedly had carpal tunnel, although only one hand had been overused.
* got PF and then bilateral achilles, peroneal, and post tib. tendonitis starting in 1999. much improved now, but am still bothered some days by tendon-type pain.
* over a year ago developed what appeared to be rotator cuff tendonitis in my right shoulder, but after MRI was diagnosed as frozen shoulder. then my left shoulder went into the same mode. after all this time, they are very slowly improving but still give me a lot of pain, especially at night. i wake up in the morning in a lot of pain.

* a few months ago both knees became painful -- they ache off and on during the day, but especially in the morning.

* NOW i've developed this strange back and leg pain. it starts as soon as i wake up -- i can barely get up out of bed, and some mornings the pain is bad enough to have me in tears. it's upper and lower back, and it radiates down through my hip into my leg, especially my right one. it takes hours to kind of walk it out, and some days it finally seems to disappear completely; other days it's just less sore as the day goes on. in either case, i go to bed and wake up in the same bad pain. i've 'thrown my back out' in the past, but this feels different. it's getting so i can't get comfortable, whether i'm sitting or lying down. standing would probably feel best, if it weren't for the foot problems!

i know a couple of people with fibromyalgia, and they think i should be tested, but they're not very forthcoming about their symptoms and the stuff i read seems very general and vague.

do you think i should see my doctor about these latest developments? do all doctors know how to test for fibromyalgia? i know it's partly a pressure points test -- is there anything else? throughout the foot and shoulder problems, i was blood-tested for all other conditions with similar symptoms; i don't have rheumatoid, lupus, etc.

fibromyalgia seems so mysterious to me. do they know what causes it, and can they do anything about it? i'd appreciate any opinions and/or info you can offer. thanks a lot!

nancy

Re: fibromyalgia -- barbara s. and others with this condiition

Julie on 5/02/02 at 16:33 (082167)

Dear Nancy, I am so sorry! I can't offer any information about fibromyalgia, only my total sympathy with this new affliction. I do think you should see your doctor.

Love to you, and an email will shortly be on its way.

Julie

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/02/02 at 18:52 (082190)

hi nancy...i too have fibro...i'm not dr...and can't give you any medical advice...only advice based on my experience...

i started with PF...and upper back pain...the two problems probably were unrelated initially...in the last 8 years however...the pain from my feet (and i say this loosely) has gone up my legs to my knees...my knees ache all the time...then to my hips...and my lower back...my upper back pain has gone down to my lower back...and up to my neck...

as far as the pain in hips...get a tennis ball...a used one is best...and put it on the floor...and lay on it where you hurt...it will be awkward and look funny...but it helps! i love my tennis balls! fibro causes trigger points...and the fibro with your feet pain will cause all kinds of problems up your legs and into your hips...the tennis ball will work out some of the trigger points...my trigger points are so bad now...i need bi-weekly injections

i don't know how much info you need on fibro...so why don't you email me and we can talk more about it...you definitely need to see a dr though...a rheumatologist is best...a very good author about fibro is dr. devin starlanyl...she is a MD who has fibro...i have found her books very helpful...

i know in my case...the PF was initially unrelated to the fibro...but now both are intertwined...as well as the pain in my back...

i feel if i can get my feet problem resolved...i will feel better in other areas...

please feel free to email me... (email removed)
take care,
lisa

Re: fibromyalgia -- barbara s. and others with this condiition

Joe S on 5/02/02 at 21:35 (082226)

Fibromyalgia is a diagnosis of exclusion. That is, the doctor just does not know what you have. You have chronic pain. Some people believe it's a true entity. Other's think that it's in your head. Most people who aer diagnosed with it have messed up sleep patterns. Most of the patient's with 'Fibromyalgia' take a ton of medicine, wear every brace known to man, nkow more about their disease than the doctor and are typically hypochondriacs. They're in the doctors offices all of the time. I don't mean to sound sarcastic. I'm telling you the truth. If you're in chronic pain, you need to be seen by a pain management specialist. Get an MRI of your back. See if you have any herniated disks etc.... Get the appropriate referral.

Re: Hmmm

wendyn on 5/02/02 at 21:50 (082229)

Joe - I don't have fibromyalgia - but I'm curious to know what medical resource you're quoting when you say that most patients with fibromyalgia are hypchondriacs, and know more about their condition than the doctors?

I don't think you sound sarcastic. I think you sound as though you don't believe that fibromyalgia even exists..and I'm curious about what you base that conclusion on. Is this based on your research, or just a personal opinion?

Re: Joe S

Laurie R on 5/02/02 at 21:56 (082230)

Hi Joe , I have asked you before and you never answered me , are you a doctor ? Laurie R

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/02/02 at 22:27 (082235)

joe,
i take great offense to your description of fibromyalgia and people with fibromyalgia...do you have this condition? do you know anyone who has it?

fibromyalgia is a very debilitating condition that affects millions of people...and is often misdiagnosed or undiagnosed...due in a large part to that closed-minded attitude...

just because a condition does not show up in any lab test...does not mean it isn't a valid complaint...

please read, all of whom are medical doctors:
dr devin starlanyl
dr. paul st. armand
dr. joe m. elrod

to name a few...

better yet...please feel free to call my rheumatologist, dr. carey dachman, 847 358 5093...he will be more than glad to correct any misconceptions you may have...

how DARE you say that people with this condition are 'typically hypochondriacs'

i do not take take a ton of medication, do not wear every brace known to man, and avoid going to the dr as much as possible...

i am trying to abide by the rules of 'be nice' here on this board so i will end this post now...but i suggest you do some research before opening your mouth on fibromyalgia again

lisa

Re: one more thing to joe

Lisa G on 5/02/02 at 22:30 (082236)

people come to this board for support...not to be ridiculed by you...or any other mis-informed person...

my pain levels are so high...you would probably be in the hospital right now...

ok...i really have to end this before i say something i will regret...

Re: fibromyalgia -- barbara s. and others with this condiition

nancy s. on 5/02/02 at 23:53 (082243)

lisa, thank you so much for answering my post. i feel terrible that my question brought such profound insults out from under a rock. please don't let this person get to you -- he obviously knows nothing about your condition, sounds extremely biased, and certainly didn't read my post carefully either.
thank you again, and i'll email you tomorrow.
nancy

Re: Lisa

wendyn on 5/03/02 at 00:40 (082245)

Lisa - there are people out there who thrive on attention and will say anything to get it.

Our new friend Joe seems determined to get a reaction here...first by getting cranked up over Dr Z's video - then by implying that someone's feet problems are because of their weight...now the shot about fibromyalgia.

Re: fibromyalgia -- barbara s. and others with this condiition

Carole C in NOLA on 5/03/02 at 06:44 (082271)

Nancy, I don't have fibromyalgia, but I think you should see a good rheumatologist and let him find out what is going on. See what he suspects and let him test for that. There are several different conditions that don't show up in blood tests but which can result in a lot of pain, not just fibromyalgia. Are you on any pain medication? If you aren't, he can at least prescribe some.

Carole C

Re: PS

Carole C in NOLA on 5/03/02 at 06:51 (082272)

PS... in other words, to clarify: I DON'T think you should see your family doctor about this.

Joint problems are a very complex specialty (there are over 60 forms of arthritis, for example) and I think you should see a specialist, in this case a rheumatologist. I see one, and he sees people with fibromyalgia, arthritis, and all sorts of similar problems. He deals with this kind of diagnostic problem all day every day.

Carole C

Re: Laurie??????

Pam B on 5/03/02 at 08:01 (082279)

I know you asked him if he is a doctor and did not get an answer......if he is, then he should know that you never tell a person with a pain level of 10 that they cannot feel their pain.....I know from my back problems that I was treated for many months as if I had no pain or problem at all......I was told that I needed to relax and stop thinking about the pain..... but since I ended up with back surgery X2, I guess that would mean I was humiliated and treated like a hypochondriac for nothing......I dont know who Joe is, but I know that his people skills need some work......even he has to know the way he is wording his posts puts a fire under some people and for some of the people coming here, adding to their stress is not helping anyone......

My mom always said, if you cant say anything nice, dont say anything at all......

Re: fibromyalgia -- barbara s. and others with this condiition

Barbara S on 5/03/02 at 08:02 (082281)

Hi Nancy I was diagnosed with Fibromyalgia about 7 yrs ago. I had a lot of test done,blood,mri, cat scans,etc.All of which were negative. It is these negative test that lead to the diagnoses of Fibromyalgia. Mine actually started after I was in a car accident in May of 1994. I had whip lash. Was treated with therapy and Chiropractor, and nothing took the pain away. My left shoulder and left side of my neck are like cement, in my left shoulder blade I have a knot that never goes away no matter how much massaging I get. My elbows ache,myhips,lower back kness calfs feet etc.I believe my feet trouble are related to my fibro.
After I was diagnosed with fibro a couple years down the road,I had another Cat Scan of my lower back, as I getting pain down my leg. This showed that I had two bulging disc in the lower back.
I don't take any pain medication either,because they don't work. I have gone out on my own and do Chiro. appts. twice a month and I go to a Massage Therapist twice a month @ $50.00 a crack out of my own pocket for this. I have tried different viatimins that are suppose to help, but I couldn't say for sure if they do.
They say Fibro is not life threatening,but it does distory your quality of life as far as I am concern. Some days are good and I'll do things and I can do them, but the next day I pay for it and then it gets me down.
I do not wear any kind of braces either I don't know what this JOe is talking about.
One of the most important things to do is get a good nights sleep. My primary care physician perscribed Ambien for me. I use to take it only occastionally until my foot started bothering me,now I take it every night,only way I can get any sleep.
Fibro is a disability and under the law you are disabled. If you work and need time it falls under the FMLA(Family Medical Leave Act) as a chronic condition. THis should help with time off as they can not charge your asbence against you.
I worked with a pain management Dr. for awhile for trigger point injections,nerve blocks and something called Radio Frequency something or other. Involved alot of injections in my neck area(he was working on that area first) some of which I had to be but to sleep for. These only worked for a little time. The Radio frequency thing he as trying might have worked,but right when he was starting them I was in another car accident,and I have been dealing with those injurys since last March.
Well this is getting too long. Get to the Doctor Nancy for a proper diagnoses this will help in the long run. Don't let anyone tell you it's in your head. It's not. Good Luck and God Bless. Barbara S

Re: fibromyalgia -- barbara s. and others with this condiition

nancy s. on 5/03/02 at 08:47 (082282)

thank you so much, barbara. i'm sorry you're having such a tough time -- it sounds very difficult, and i hope your situation improves.

you're certainly right, the pain is definitely not in my head. i'm no crybaby, but i just took the hottest shower of my life to try to get some relief this morning and got no relief -- ended up crying through the whole thing. at the end i couldn't even move enough to put my own socks on.

i have to go work in my shop now. maybe i can get my husband to hang me upside down from the ceiling in order to wait on customers. but i will get to a doctor right away -- i think carole is probably right that i should see a rheumatologist, but probably the fastest way to do that is to get referred by my pcp. he's good.

thanks all -- i hope you wonderful people have a great day.
nancy

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/03/02 at 08:48 (082283)

hi barbara...i have found there are a couple medications that really help my fibro...they are not pain medications...but they help my pain...effexor...225 mg in the morning...and neurontin...

at this point my pain is unmanageable so i am taking pain meds at the moment...but hope to get off them ASAP...

if you aren't against taking prescriptions...look into some of the other medications out there that can help your pain...but aren't necessarily pain meds...

i have been dealing with fibro for 8 years...it does destroy your life...

please feel free to email me if you need some support...

lisa
(email removed)

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/03/02 at 08:51 (082285)

nancy...
do you know anyone else with fibro who either sees a good rheumatologist...or goes to a pain clinic? my rheumy runs a pain clinic...and it is wonderful! he is very much pro alternative medicine...so i get massage, physical therapy, chiropractic, accupuncture, nutritional support, emotional support...all right there...and they all work together to give you the best options for you situation...

email me...lisa

Re: Lisa

Lisa G on 5/03/02 at 08:53 (082286)

hi wendy... i know that there are peopel out there that post for the attention...i read joe's posts regarding dr z's surgery...and his posts about someone's weight...

unfortunately...i just couldn't keep my mouth shut about this...fibro has drastically altered my life...and affects millions of people...and for him to tell nancy such ludicrous information was just beyond my limits of control...

lisa

Re: fibromyalgia -- barbara s. and others with this condiition

Kathy G on 5/03/02 at 09:05 (082288)

Hi Nancy,

I suppose, up until a few months ago, I was much like Joe though I never voiced my thoughts because I would never sit in judgement of someone else's pain. I believed that people with Fibromyalgia had pain but I found it hard to believe that there was such a condition as Fibro and thought that they just suffered from muscle spasms, mechanical problems, etc. You see, the truth was that I was afraid I suffered from it, and I wasn't going to fall into that trap, by god, I wasn't going to admit that I had Fibromyalgia, despite the fact that I had displayed all the symptoms of it for more years than I wanted to count. My mind was stronger than my body and I was convinced that if I even uttered the phrase, 'I have Fibro', I'd become a whining hypochondriac.

Well, a couple of months ago, an orthopedic specialist I saw for a sprained ankle that wasn't mending, mentioned that I had Fibro. Since he was the fifth doctor, unconnected to any of the other doctors I'd seen, in a period of about ten years, who mentioned it to me,I began to accept that I do indeed have Fibromyalgia.

So what has this meant for me? Absolutely nothing! I still have my myriad of aches and pains, some days worse than others, and I still go about my life as I always have. I can't exercise or be as active as I used to be but that's because of the PF, not the Fibro. I still take 20 mg. of Amitiyptylene nightly, which was originally prescribed to help control migraine headaches, but has some viability in treatment of Fibro.
It is most important to have tests that rule out other, much more serious conditions, such as Rheumatoid arthritis, a disk problem, etc. But, by and large, once you've been diagnosed, there isn't any magic bullet that's going to help your condition. It's a matter of learning to live with it and not letting it get you down psychologically. And if depression does become a factor, making sure that you discuss it with your doctor immediately so that you go on appropriate medication. In my case, I probably had an advantage since I have no basis for comparison. I was 18 before I found out that everyone doesn't wake up with a stiff neck every morning. I've always experienced the symptoms of Fibro so I know no different. I like to think that my body is just unique but no less wonderful than everyone elses!!

So you need to get a definitive diagnosis from a reputable physician and take the treatment steps that he recommends. You need to totally ignore people like Joe who will write off all Fibro symptoms as hypochondria and you have to live your life to the best of your ability. For me, personally, I never tell anyone I have Fibro because it is such a newly recognized malady that few people, including doctors, even understand. So why subject myself to possible frustration when they act as though it's not a true condition? My neice, who has Fibro, finds the best information on Yahoo. There's a Fibromyalgia support community with message boards and it has been very helpful for her. I just went to Yahoo to see if I can figure out how she gets to them but I can't remember. I will find out from her and post a message on this site for you.

Good luck to you and hang in there. You are not crazy; you do have these symptoms and you need a good doctor who will help you manage your condition. Take care.

Re: One more thought, Nancy....

Kathy G on 5/03/02 at 09:19 (082293)

My Pod, who absolutely insisted I had Fibro, wanted me to go to a Rheumatologist for diagnosis. But he didn't want me to go to a couple in the area who he knew didn't believe in Fibromyalgia. He said that there are still many in the medical community who have not accepted the existence of it, despite credible research available saying that it does exist. He gave me the name of a Rheumatologist whom he really liked and who seems to understand Fibro.

When I went to my Primary for my annual physical, I discussed it with him and he said he didn't see any need for me to see a Rheumatologist, since he was able to diagnose it. I am fortunate to have a great Primary who's a terrific doctor and a crack diagnostician so I haven't seen a specialist. But if you need to, you might want to discuss which Rheumatologist in your area even 'believes in' Fibro. Just a thought!

Also, my neice is in law school and studying for a make-it-or-break-it eight hour exam this Saturday, so it won't be until next week that I can get that website to you, but I will!!

Re: fibromyalgia -- barbara s. and others with this condiition

Carole C on 5/03/02 at 11:22 (082303)

Nancy, I started going to my rheumatologist by just calling him directly since I was new in town and had no doctor. A co-worker with very bad arthritis recommended this rheumatologist to me, and he is one of the top rheumatologists in New Orleans. Unless your insurance requires a referral, in all likelihood there is no need to go through a primary care physician. Of course, you might want to at least have his nurse call you with his recommendations on which rheumatologists are good.

Carole C

Re: PS

Carole C on 5/03/02 at 11:30 (082305)

I didn't completely communicate my thoughts on this, so I'd like to add the following.

It could be beneficial to go to him without telling him that you have fibromyalgia and let him do the diagnosis from square one. It's possible that you have some joint condition that is more easily treatable than fibromyalgia. Give him a free rein and let him come up with his own diagnosis without being able to use fibromyalgia as a wastebasket diagnosis due to your primary care physician's diagnosis. Well, at least that is my suggestion.

Probably you do have fibromyalgia, and if you get a completely independent diagnosis this way you can be more certain of it. He will know how to treat it.

What the rheumatologist is most skilled at, is accurate diagnosis of what is causing your pain among the myriads of obscure and difficult-to-diagnose conditions that cause joint pain.

Carole C

Carole C

Re: fibromyalgia -- barbara s. and others with this condiition

john h on 5/03/02 at 11:59 (082313)

Nancy: I know little about Fibromyalgia but I think it is one of those diseases that is very difficult to diagnose and some even contend it does not exist. Sort of like you rule out everything else and you are left with fibromyalgia.

Re: Lisa

wendyn on 5/03/02 at 12:37 (082317)

Sorry Lisa, I didn't mean to imply that you shouldn't say anything...I just would hate to see comments like this get to you.

With my feet, I guess in some bizarre way I have been rather 'fortunate'. Most doctors can see that there is something wrong with the bones, tendons, and joints in my lower body. They can see the color changes that come with RSD. I'm sure this the ONLY reason that no one has every tried to imply that this is all im my head. I cannot imagine being in the type of pain I'm in sometimes..and then have someone write it off to being a made up problem.

The foot problems I have are also associated with weight. In my case, the doctors can't use this because I've never been overweight (I'm 116 lbs)...but I can't imagine how it would feel to have someone blame this on my weight.

Re: fibromyalgia -- barbara s. and others with this condiition

Kathy G on 5/03/02 at 14:47 (082327)

John,

In fact that's exactly what one of the doctors said when I questioned if there was even such a thing as Fibromyalgia. He said that he had never believed it until recently but he said that they had to have some way of explaining people like me who have unresponsive inflammation, aches and swelling that have no obvious physiological cause. Kind of a catch-all, I guess! Personally, I just think I have an obstinate body!!

Re: fibromyalgia -- barbara s. and others with this condiition

John h on 5/03/02 at 15:56 (082335)

Kathy: fibro sort of fits the bill for PF in that many of us cannot shake it, some do not believe our feet hurt that much, and no one knows for sure what causes it.

Re: fibromyalgia -- barbara s. and others with this condiition

Julie on 5/02/02 at 16:33 (082167)

Dear Nancy, I am so sorry! I can't offer any information about fibromyalgia, only my total sympathy with this new affliction. I do think you should see your doctor.

Love to you, and an email will shortly be on its way.

Julie

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/02/02 at 18:52 (082190)

hi nancy...i too have fibro...i'm not dr...and can't give you any medical advice...only advice based on my experience...

i started with PF...and upper back pain...the two problems probably were unrelated initially...in the last 8 years however...the pain from my feet (and i say this loosely) has gone up my legs to my knees...my knees ache all the time...then to my hips...and my lower back...my upper back pain has gone down to my lower back...and up to my neck...

as far as the pain in hips...get a tennis ball...a used one is best...and put it on the floor...and lay on it where you hurt...it will be awkward and look funny...but it helps! i love my tennis balls! fibro causes trigger points...and the fibro with your feet pain will cause all kinds of problems up your legs and into your hips...the tennis ball will work out some of the trigger points...my trigger points are so bad now...i need bi-weekly injections

i don't know how much info you need on fibro...so why don't you email me and we can talk more about it...you definitely need to see a dr though...a rheumatologist is best...a very good author about fibro is dr. devin starlanyl...she is a MD who has fibro...i have found her books very helpful...

i know in my case...the PF was initially unrelated to the fibro...but now both are intertwined...as well as the pain in my back...

i feel if i can get my feet problem resolved...i will feel better in other areas...

please feel free to email me... (email removed)
take care,
lisa

Re: fibromyalgia -- barbara s. and others with this condiition

Joe S on 5/02/02 at 21:35 (082226)

Fibromyalgia is a diagnosis of exclusion. That is, the doctor just does not know what you have. You have chronic pain. Some people believe it's a true entity. Other's think that it's in your head. Most people who aer diagnosed with it have messed up sleep patterns. Most of the patient's with 'Fibromyalgia' take a ton of medicine, wear every brace known to man, nkow more about their disease than the doctor and are typically hypochondriacs. They're in the doctors offices all of the time. I don't mean to sound sarcastic. I'm telling you the truth. If you're in chronic pain, you need to be seen by a pain management specialist. Get an MRI of your back. See if you have any herniated disks etc.... Get the appropriate referral.

Re: Hmmm

wendyn on 5/02/02 at 21:50 (082229)

Joe - I don't have fibromyalgia - but I'm curious to know what medical resource you're quoting when you say that most patients with fibromyalgia are hypchondriacs, and know more about their condition than the doctors?

I don't think you sound sarcastic. I think you sound as though you don't believe that fibromyalgia even exists..and I'm curious about what you base that conclusion on. Is this based on your research, or just a personal opinion?

Re: Joe S

Laurie R on 5/02/02 at 21:56 (082230)

Hi Joe , I have asked you before and you never answered me , are you a doctor ? Laurie R

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/02/02 at 22:27 (082235)

joe,
i take great offense to your description of fibromyalgia and people with fibromyalgia...do you have this condition? do you know anyone who has it?

fibromyalgia is a very debilitating condition that affects millions of people...and is often misdiagnosed or undiagnosed...due in a large part to that closed-minded attitude...

just because a condition does not show up in any lab test...does not mean it isn't a valid complaint...

please read, all of whom are medical doctors:
dr devin starlanyl
dr. paul st. armand
dr. joe m. elrod

to name a few...

better yet...please feel free to call my rheumatologist, dr. carey dachman, 847 358 5093...he will be more than glad to correct any misconceptions you may have...

how DARE you say that people with this condition are 'typically hypochondriacs'

i do not take take a ton of medication, do not wear every brace known to man, and avoid going to the dr as much as possible...

i am trying to abide by the rules of 'be nice' here on this board so i will end this post now...but i suggest you do some research before opening your mouth on fibromyalgia again

lisa

Re: one more thing to joe

Lisa G on 5/02/02 at 22:30 (082236)

people come to this board for support...not to be ridiculed by you...or any other mis-informed person...

my pain levels are so high...you would probably be in the hospital right now...

ok...i really have to end this before i say something i will regret...

Re: fibromyalgia -- barbara s. and others with this condiition

nancy s. on 5/02/02 at 23:53 (082243)

lisa, thank you so much for answering my post. i feel terrible that my question brought such profound insults out from under a rock. please don't let this person get to you -- he obviously knows nothing about your condition, sounds extremely biased, and certainly didn't read my post carefully either.
thank you again, and i'll email you tomorrow.
nancy

Re: Lisa

wendyn on 5/03/02 at 00:40 (082245)

Lisa - there are people out there who thrive on attention and will say anything to get it.

Our new friend Joe seems determined to get a reaction here...first by getting cranked up over Dr Z's video - then by implying that someone's feet problems are because of their weight...now the shot about fibromyalgia.

Re: fibromyalgia -- barbara s. and others with this condiition

Carole C in NOLA on 5/03/02 at 06:44 (082271)

Nancy, I don't have fibromyalgia, but I think you should see a good rheumatologist and let him find out what is going on. See what he suspects and let him test for that. There are several different conditions that don't show up in blood tests but which can result in a lot of pain, not just fibromyalgia. Are you on any pain medication? If you aren't, he can at least prescribe some.

Carole C

Re: PS

Carole C in NOLA on 5/03/02 at 06:51 (082272)

PS... in other words, to clarify: I DON'T think you should see your family doctor about this.

Joint problems are a very complex specialty (there are over 60 forms of arthritis, for example) and I think you should see a specialist, in this case a rheumatologist. I see one, and he sees people with fibromyalgia, arthritis, and all sorts of similar problems. He deals with this kind of diagnostic problem all day every day.

Carole C

Re: Laurie??????

Pam B on 5/03/02 at 08:01 (082279)

I know you asked him if he is a doctor and did not get an answer......if he is, then he should know that you never tell a person with a pain level of 10 that they cannot feel their pain.....I know from my back problems that I was treated for many months as if I had no pain or problem at all......I was told that I needed to relax and stop thinking about the pain..... but since I ended up with back surgery X2, I guess that would mean I was humiliated and treated like a hypochondriac for nothing......I dont know who Joe is, but I know that his people skills need some work......even he has to know the way he is wording his posts puts a fire under some people and for some of the people coming here, adding to their stress is not helping anyone......

My mom always said, if you cant say anything nice, dont say anything at all......

Re: fibromyalgia -- barbara s. and others with this condiition

Barbara S on 5/03/02 at 08:02 (082281)

Hi Nancy I was diagnosed with Fibromyalgia about 7 yrs ago. I had a lot of test done,blood,mri, cat scans,etc.All of which were negative. It is these negative test that lead to the diagnoses of Fibromyalgia. Mine actually started after I was in a car accident in May of 1994. I had whip lash. Was treated with therapy and Chiropractor, and nothing took the pain away. My left shoulder and left side of my neck are like cement, in my left shoulder blade I have a knot that never goes away no matter how much massaging I get. My elbows ache,myhips,lower back kness calfs feet etc.I believe my feet trouble are related to my fibro.
After I was diagnosed with fibro a couple years down the road,I had another Cat Scan of my lower back, as I getting pain down my leg. This showed that I had two bulging disc in the lower back.
I don't take any pain medication either,because they don't work. I have gone out on my own and do Chiro. appts. twice a month and I go to a Massage Therapist twice a month @ $50.00 a crack out of my own pocket for this. I have tried different viatimins that are suppose to help, but I couldn't say for sure if they do.
They say Fibro is not life threatening,but it does distory your quality of life as far as I am concern. Some days are good and I'll do things and I can do them, but the next day I pay for it and then it gets me down.
I do not wear any kind of braces either I don't know what this JOe is talking about.
One of the most important things to do is get a good nights sleep. My primary care physician perscribed Ambien for me. I use to take it only occastionally until my foot started bothering me,now I take it every night,only way I can get any sleep.
Fibro is a disability and under the law you are disabled. If you work and need time it falls under the FMLA(Family Medical Leave Act) as a chronic condition. THis should help with time off as they can not charge your asbence against you.
I worked with a pain management Dr. for awhile for trigger point injections,nerve blocks and something called Radio Frequency something or other. Involved alot of injections in my neck area(he was working on that area first) some of which I had to be but to sleep for. These only worked for a little time. The Radio frequency thing he as trying might have worked,but right when he was starting them I was in another car accident,and I have been dealing with those injurys since last March.
Well this is getting too long. Get to the Doctor Nancy for a proper diagnoses this will help in the long run. Don't let anyone tell you it's in your head. It's not. Good Luck and God Bless. Barbara S

Re: fibromyalgia -- barbara s. and others with this condiition

nancy s. on 5/03/02 at 08:47 (082282)

thank you so much, barbara. i'm sorry you're having such a tough time -- it sounds very difficult, and i hope your situation improves.

you're certainly right, the pain is definitely not in my head. i'm no crybaby, but i just took the hottest shower of my life to try to get some relief this morning and got no relief -- ended up crying through the whole thing. at the end i couldn't even move enough to put my own socks on.

i have to go work in my shop now. maybe i can get my husband to hang me upside down from the ceiling in order to wait on customers. but i will get to a doctor right away -- i think carole is probably right that i should see a rheumatologist, but probably the fastest way to do that is to get referred by my pcp. he's good.

thanks all -- i hope you wonderful people have a great day.
nancy

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/03/02 at 08:48 (082283)

hi barbara...i have found there are a couple medications that really help my fibro...they are not pain medications...but they help my pain...effexor...225 mg in the morning...and neurontin...

at this point my pain is unmanageable so i am taking pain meds at the moment...but hope to get off them ASAP...

if you aren't against taking prescriptions...look into some of the other medications out there that can help your pain...but aren't necessarily pain meds...

i have been dealing with fibro for 8 years...it does destroy your life...

please feel free to email me if you need some support...

lisa
(email removed)

Re: fibromyalgia -- barbara s. and others with this condiition

Lisa G on 5/03/02 at 08:51 (082285)

nancy...
do you know anyone else with fibro who either sees a good rheumatologist...or goes to a pain clinic? my rheumy runs a pain clinic...and it is wonderful! he is very much pro alternative medicine...so i get massage, physical therapy, chiropractic, accupuncture, nutritional support, emotional support...all right there...and they all work together to give you the best options for you situation...

email me...lisa

Re: Lisa

Lisa G on 5/03/02 at 08:53 (082286)

hi wendy... i know that there are peopel out there that post for the attention...i read joe's posts regarding dr z's surgery...and his posts about someone's weight...

unfortunately...i just couldn't keep my mouth shut about this...fibro has drastically altered my life...and affects millions of people...and for him to tell nancy such ludicrous information was just beyond my limits of control...

lisa

Re: fibromyalgia -- barbara s. and others with this condiition

Kathy G on 5/03/02 at 09:05 (082288)

Hi Nancy,

I suppose, up until a few months ago, I was much like Joe though I never voiced my thoughts because I would never sit in judgement of someone else's pain. I believed that people with Fibromyalgia had pain but I found it hard to believe that there was such a condition as Fibro and thought that they just suffered from muscle spasms, mechanical problems, etc. You see, the truth was that I was afraid I suffered from it, and I wasn't going to fall into that trap, by god, I wasn't going to admit that I had Fibromyalgia, despite the fact that I had displayed all the symptoms of it for more years than I wanted to count. My mind was stronger than my body and I was convinced that if I even uttered the phrase, 'I have Fibro', I'd become a whining hypochondriac.

Well, a couple of months ago, an orthopedic specialist I saw for a sprained ankle that wasn't mending, mentioned that I had Fibro. Since he was the fifth doctor, unconnected to any of the other doctors I'd seen, in a period of about ten years, who mentioned it to me,I began to accept that I do indeed have Fibromyalgia.

So what has this meant for me? Absolutely nothing! I still have my myriad of aches and pains, some days worse than others, and I still go about my life as I always have. I can't exercise or be as active as I used to be but that's because of the PF, not the Fibro. I still take 20 mg. of Amitiyptylene nightly, which was originally prescribed to help control migraine headaches, but has some viability in treatment of Fibro.
It is most important to have tests that rule out other, much more serious conditions, such as Rheumatoid arthritis, a disk problem, etc. But, by and large, once you've been diagnosed, there isn't any magic bullet that's going to help your condition. It's a matter of learning to live with it and not letting it get you down psychologically. And if depression does become a factor, making sure that you discuss it with your doctor immediately so that you go on appropriate medication. In my case, I probably had an advantage since I have no basis for comparison. I was 18 before I found out that everyone doesn't wake up with a stiff neck every morning. I've always experienced the symptoms of Fibro so I know no different. I like to think that my body is just unique but no less wonderful than everyone elses!!

So you need to get a definitive diagnosis from a reputable physician and take the treatment steps that he recommends. You need to totally ignore people like Joe who will write off all Fibro symptoms as hypochondria and you have to live your life to the best of your ability. For me, personally, I never tell anyone I have Fibro because it is such a newly recognized malady that few people, including doctors, even understand. So why subject myself to possible frustration when they act as though it's not a true condition? My neice, who has Fibro, finds the best information on Yahoo. There's a Fibromyalgia support community with message boards and it has been very helpful for her. I just went to Yahoo to see if I can figure out how she gets to them but I can't remember. I will find out from her and post a message on this site for you.

Good luck to you and hang in there. You are not crazy; you do have these symptoms and you need a good doctor who will help you manage your condition. Take care.

Re: One more thought, Nancy....

Kathy G on 5/03/02 at 09:19 (082293)

My Pod, who absolutely insisted I had Fibro, wanted me to go to a Rheumatologist for diagnosis. But he didn't want me to go to a couple in the area who he knew didn't believe in Fibromyalgia. He said that there are still many in the medical community who have not accepted the existence of it, despite credible research available saying that it does exist. He gave me the name of a Rheumatologist whom he really liked and who seems to understand Fibro.

When I went to my Primary for my annual physical, I discussed it with him and he said he didn't see any need for me to see a Rheumatologist, since he was able to diagnose it. I am fortunate to have a great Primary who's a terrific doctor and a crack diagnostician so I haven't seen a specialist. But if you need to, you might want to discuss which Rheumatologist in your area even 'believes in' Fibro. Just a thought!

Also, my neice is in law school and studying for a make-it-or-break-it eight hour exam this Saturday, so it won't be until next week that I can get that website to you, but I will!!

Re: fibromyalgia -- barbara s. and others with this condiition

Carole C on 5/03/02 at 11:22 (082303)

Nancy, I started going to my rheumatologist by just calling him directly since I was new in town and had no doctor. A co-worker with very bad arthritis recommended this rheumatologist to me, and he is one of the top rheumatologists in New Orleans. Unless your insurance requires a referral, in all likelihood there is no need to go through a primary care physician. Of course, you might want to at least have his nurse call you with his recommendations on which rheumatologists are good.

Carole C

Re: PS

Carole C on 5/03/02 at 11:30 (082305)

I didn't completely communicate my thoughts on this, so I'd like to add the following.

It could be beneficial to go to him without telling him that you have fibromyalgia and let him do the diagnosis from square one. It's possible that you have some joint condition that is more easily treatable than fibromyalgia. Give him a free rein and let him come up with his own diagnosis without being able to use fibromyalgia as a wastebasket diagnosis due to your primary care physician's diagnosis. Well, at least that is my suggestion.

Probably you do have fibromyalgia, and if you get a completely independent diagnosis this way you can be more certain of it. He will know how to treat it.

What the rheumatologist is most skilled at, is accurate diagnosis of what is causing your pain among the myriads of obscure and difficult-to-diagnose conditions that cause joint pain.

Carole C

Carole C

Re: fibromyalgia -- barbara s. and others with this condiition

john h on 5/03/02 at 11:59 (082313)

Nancy: I know little about Fibromyalgia but I think it is one of those diseases that is very difficult to diagnose and some even contend it does not exist. Sort of like you rule out everything else and you are left with fibromyalgia.

Re: Lisa

wendyn on 5/03/02 at 12:37 (082317)

Sorry Lisa, I didn't mean to imply that you shouldn't say anything...I just would hate to see comments like this get to you.

With my feet, I guess in some bizarre way I have been rather 'fortunate'. Most doctors can see that there is something wrong with the bones, tendons, and joints in my lower body. They can see the color changes that come with RSD. I'm sure this the ONLY reason that no one has every tried to imply that this is all im my head. I cannot imagine being in the type of pain I'm in sometimes..and then have someone write it off to being a made up problem.

The foot problems I have are also associated with weight. In my case, the doctors can't use this because I've never been overweight (I'm 116 lbs)...but I can't imagine how it would feel to have someone blame this on my weight.

Re: fibromyalgia -- barbara s. and others with this condiition

Kathy G on 5/03/02 at 14:47 (082327)

John,

In fact that's exactly what one of the doctors said when I questioned if there was even such a thing as Fibromyalgia. He said that he had never believed it until recently but he said that they had to have some way of explaining people like me who have unresponsive inflammation, aches and swelling that have no obvious physiological cause. Kind of a catch-all, I guess! Personally, I just think I have an obstinate body!!

Re: fibromyalgia -- barbara s. and others with this condiition

John h on 5/03/02 at 15:56 (082335)

Kathy: fibro sort of fits the bill for PF in that many of us cannot shake it, some do not believe our feet hurt that much, and no one knows for sure what causes it.