Hope4All
07-12-2007, 02:35 PM
I was just curious as to how many with MS were diagnosed with Fibro first?
I thought that the main difference between the two was the pain in our joints and all over wide spread body pain.
Hope
I thought that the main difference between the two was the pain in our joints and all over wide spread body pain.
Hope
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MSNik
07-12-2007, 09:56 PM
Hope, I really hope this doesnt offend you, but Fibro, although it truly is a disease, is usually diagnosed as a catch all phrase by doctors who dont know enough to do the right tests and find out what is wrong with the patient. I was NOT dx with Fibro, and was dx with MS within a week of my first onset of symptoms..but I had a ton of testing done to be sure.
Fibro is a disease, and does cause joint pain, however it causes many other sytmpoms as well..most of which, MS also causes....read up on it. There is a whole forum here for Fibro. I would NEVER say that someone DOESNT have Fibro..it really does exist, and is quite painful...however, in my own research, I have found that literally thousands of MS patients were dx with Fibro, before they eventually got to the point that their dr referred them to an MS specialist because their Doctor could no longer handle the symptoms or the pain of the patients....early dx being key to MS, using Fibro as an excuse to "have a dx" is a shame..
I hope you didnt have to go thru all that...if you have any doubts, see a good Neuro, perferably one who specialises in MS..
Fibro is a disease, and does cause joint pain, however it causes many other sytmpoms as well..most of which, MS also causes....read up on it. There is a whole forum here for Fibro. I would NEVER say that someone DOESNT have Fibro..it really does exist, and is quite painful...however, in my own research, I have found that literally thousands of MS patients were dx with Fibro, before they eventually got to the point that their dr referred them to an MS specialist because their Doctor could no longer handle the symptoms or the pain of the patients....early dx being key to MS, using Fibro as an excuse to "have a dx" is a shame..
I hope you didnt have to go thru all that...if you have any doubts, see a good Neuro, perferably one who specialises in MS..
CJRT
07-13-2007, 09:38 AM
I was Dx-ed with Fibro 3 years ago. On Wed., I saw a new neuro (I'm in a new state as well) and he said I definetly did NOT have fibro. After reviewing my huge file of dr. records, talking to me, etc., he said that I was given the Dx of Fibro because they did NOT do enough testing on me and that he felt it was a "wastebasket" Dx because they couldn't or wouldn't find anything else wrong with me.
He did not say that I had MS. He did say I had some MS like symptoms and that he wishes to do further testing, but that a great many of my symptoms didn't even match Fibro. Some did.
He did not say that I had MS. He did say I had some MS like symptoms and that he wishes to do further testing, but that a great many of my symptoms didn't even match Fibro. Some did.
MSNik
07-13-2007, 10:48 AM
What CJRT posted is exactly what I was trying to say...most doctors throw out that Fibro dx really quick and then do nothing for you excpet prescribe drugs...
Fibro doesnt always mean MS, however if you really understand Fibro, you will understand that its a part of MS...meaning, MS might be the underlying cause..but so can Lyme disease, certain brain infections, etc. IT doesnt always mean MS...
Fibro, in my opinion, shouldnt be a dx...it should be a symtpom of something bigger....YES it is REAL...and YES it hurts...but honestly, all they do is throw pain killers at you most of the time...there has to be MORE to why the body has developed this, then just joint pain....
The most important thing is to find a different doctor...CJRT just had a great experinece as she shared with us on another thread....you need both a compsssionate doc as well as one who knows Neurology...a good MS doc, will be able to order every test you could possibly need to rule out everything including MS....MS docs dont just treat MS, they rule it out as well. Its a great place to start.
Hugs to you.
Nikki
Fibro doesnt always mean MS, however if you really understand Fibro, you will understand that its a part of MS...meaning, MS might be the underlying cause..but so can Lyme disease, certain brain infections, etc. IT doesnt always mean MS...
Fibro, in my opinion, shouldnt be a dx...it should be a symtpom of something bigger....YES it is REAL...and YES it hurts...but honestly, all they do is throw pain killers at you most of the time...there has to be MORE to why the body has developed this, then just joint pain....
The most important thing is to find a different doctor...CJRT just had a great experinece as she shared with us on another thread....you need both a compsssionate doc as well as one who knows Neurology...a good MS doc, will be able to order every test you could possibly need to rule out everything including MS....MS docs dont just treat MS, they rule it out as well. Its a great place to start.
Hugs to you.
Nikki
Hope4All
07-13-2007, 10:59 AM
Well I saw a Neurologist last week, for my dizziness. He ordered the EMG and MRI of my Brain which he noted as RE: R/O MS (which I guess means Rule out) then MRI of C-spine and T-spine.
I'm wondering IF he doesn't feel it IS MS by his wording....saying rule out. I cannot get into his head to know what he meant though lol
These are the only tests left to do, before my fibro dx I was ran thru a battery of tests.
I did think way back when that I had ms, I had every neuro symptom that was listed for MS, then my body healed after a time, then instead of neuro problems PAIN started so that is where I am now.
The only Neuro problems I have now are dizziness and memory problems......also everytime I want to say something most of the time it comes out all wrong.
Guess we will see what all these tests have to say.
Hope
I'm wondering IF he doesn't feel it IS MS by his wording....saying rule out. I cannot get into his head to know what he meant though lol
These are the only tests left to do, before my fibro dx I was ran thru a battery of tests.
I did think way back when that I had ms, I had every neuro symptom that was listed for MS, then my body healed after a time, then instead of neuro problems PAIN started so that is where I am now.
The only Neuro problems I have now are dizziness and memory problems......also everytime I want to say something most of the time it comes out all wrong.
Guess we will see what all these tests have to say.
Hope
hereinwi
07-13-2007, 11:20 AM
Hey Hope,
I also was told that I had fibro, and I am sure it was because my doctor thought it would shut me up. Well it didn't and I am now seeing a neurologist who also specializes in MS due to lesions they found on my brain. I by far do not have nearly as many as some of the people in these groups do, but everyone has different signs of MS (by the way I have not gotten an actual diagnosis yet) I am not sure if they have done a spinal tap/memory testing on you yet but I know they do these tests if they suspect MS and are still trying to rule out other things. When they did my last MRI my neuro asked for an MS Protocol with contrast, basically letting the MRI techs know that they are trying to search for or rule out MS. Depending on these results they may or may not due a spinal tap. I do want you to know that pain can be neurological and it is called neuropathy, which is what my main symptom is. I am on Gabapentin for it which is a medication given to those diagnosed with MS. I have been going through this pain for so long now that an honest diagnosis would be heaven.
I think everyone here knows what hell it is to be diagnosed with anything, whatever it may be! I wish you the best!
I also was told that I had fibro, and I am sure it was because my doctor thought it would shut me up. Well it didn't and I am now seeing a neurologist who also specializes in MS due to lesions they found on my brain. I by far do not have nearly as many as some of the people in these groups do, but everyone has different signs of MS (by the way I have not gotten an actual diagnosis yet) I am not sure if they have done a spinal tap/memory testing on you yet but I know they do these tests if they suspect MS and are still trying to rule out other things. When they did my last MRI my neuro asked for an MS Protocol with contrast, basically letting the MRI techs know that they are trying to search for or rule out MS. Depending on these results they may or may not due a spinal tap. I do want you to know that pain can be neurological and it is called neuropathy, which is what my main symptom is. I am on Gabapentin for it which is a medication given to those diagnosed with MS. I have been going through this pain for so long now that an honest diagnosis would be heaven.
I think everyone here knows what hell it is to be diagnosed with anything, whatever it may be! I wish you the best!
Hope4All
07-13-2007, 12:32 PM
Thanks for your reply
Mine just says Brain w/contrast RE: R/O MS
I'm not sure if that is the same thing as the MS protocol. I'm new to this, and I'm learning.
Hopefully between the EMG and the MRI's I will know something, maybe not a "definate" answer (although that would be nice). If its NOT MS, I would guess these tests should tell me.
Hope
Mine just says Brain w/contrast RE: R/O MS
I'm not sure if that is the same thing as the MS protocol. I'm new to this, and I'm learning.
Hopefully between the EMG and the MRI's I will know something, maybe not a "definate" answer (although that would be nice). If its NOT MS, I would guess these tests should tell me.
Hope
kgirl04
07-13-2007, 07:02 PM
Hi All..New to MS board, I have been on the Fibro board previously, but due to me getting fed up with my rheumatologist, I made an appt with a Fibro specialist, who happens to be a Neurologist...and guess what?? He thinks I may have MS..so...I have been reading what everyone is saying here and I just had to put my 2cents in. While I have been suffering with fibro for the last 4 1/2 years, the past year, it just felt like there was something else going on. It started with pins and needles and my hands going numb while I was driving, also started having blurry vision..not exactly good while your driving on the highway:confused: soooo, had my EMG today, and I only have a teeny little carpal tunnel problem, no neuropathy, no rheum arthritis..I see my neurologist in couple days, I am guessing the MRI is next. So, yes, I definately think that Fibro is a precurser to other things, that haven't exactly manifested yet. I do have a questin for you all though, does anyone feel like their hands are swollen? I feel like I have been retaining water the past couple of weeks, even under my eyes, is a little puffy...just wonderin:confused:
Hope4All
07-14-2007, 12:39 PM
Hi Kgirl,
How was the emg? I have one coming up. My rheumy isn't to great thats why I went to a neurologist.
I also will be having a MRI of brain,c scan and t scan.
Hope we all get answers soon.
Hope
How was the emg? I have one coming up. My rheumy isn't to great thats why I went to a neurologist.
I also will be having a MRI of brain,c scan and t scan.
Hope we all get answers soon.
Hope
CJRT
07-14-2007, 12:49 PM
Kgirl-I too have swollen hands and seem bloated in my abdomin lately.
I always felt that my fibro Dx wasn't right. I always felt more was wrong.
I think one day they are going to find that Fibro is probably another disease or combination of diseases and it seems like its getting more accepted today than it used too and therefore more attention. I've had dr. tell me they don't believe in Fibro to which I've answered, all right, then let's find out what it really is I have. But they would never go farther than that. I'm so relieved to have a good doctor know that is going to get to the bottom of my problems.
Now my neuro says I don't have fibro. So I have to think that the few, half hearted attempts my dr. tried to treat the fibro didn't work because I don't have it. I wish a doctor would throw pain meds at me. I can't get any. I am always really careful when I do have them to ONLY take them when the pain is so severe that and OTC pain reliever doesn't work. There are times, like today that my pain is at a level where I need a pain pill. My doctors have been telling me that they don't want to just "hand out pain Rx". I'm fine with that. Give me a few for the occasional day I DO really need it.
Then I see others who have fibro and their dr. give out WAY more than they should in the terms of pain meds. and they've gotten addicted.
I know you can get addicted to these drugs, but knowing that is why I don't want to take them daily. I don't need too. But can't convince my dr. of that.
I do believe Fibro is real, but I'm wondering if Fibro masks other REAL problems sometimes too.
I always felt that my fibro Dx wasn't right. I always felt more was wrong.
I think one day they are going to find that Fibro is probably another disease or combination of diseases and it seems like its getting more accepted today than it used too and therefore more attention. I've had dr. tell me they don't believe in Fibro to which I've answered, all right, then let's find out what it really is I have. But they would never go farther than that. I'm so relieved to have a good doctor know that is going to get to the bottom of my problems.
Now my neuro says I don't have fibro. So I have to think that the few, half hearted attempts my dr. tried to treat the fibro didn't work because I don't have it. I wish a doctor would throw pain meds at me. I can't get any. I am always really careful when I do have them to ONLY take them when the pain is so severe that and OTC pain reliever doesn't work. There are times, like today that my pain is at a level where I need a pain pill. My doctors have been telling me that they don't want to just "hand out pain Rx". I'm fine with that. Give me a few for the occasional day I DO really need it.
Then I see others who have fibro and their dr. give out WAY more than they should in the terms of pain meds. and they've gotten addicted.
I know you can get addicted to these drugs, but knowing that is why I don't want to take them daily. I don't need too. But can't convince my dr. of that.
I do believe Fibro is real, but I'm wondering if Fibro masks other REAL problems sometimes too.
Hope4All
07-14-2007, 01:31 PM
Hi....I wanted to throw in that my abdomin feels bloated alot too. I was recently diagnosed with IBS after the colonoscopy/sonogram and Ctscan.
I also wish I had a Dr that would be more interested in helping my pain. We are all human beings and should not have to deal with bad pain all the time. It seems like the people that don't care about addiction get all the pain meds they want but the ones that would be careful cannot get their hands on any. Its very frustrating.
I will say that my Rheumatologist did give me Darvocet, BUT its like popping an excedrin. Its no better. I really need pain meds during my 3 days at the beginning of that time of the month. My hips, back feel like they are being broken and they burn!!!!!!!
Hope
I also wish I had a Dr that would be more interested in helping my pain. We are all human beings and should not have to deal with bad pain all the time. It seems like the people that don't care about addiction get all the pain meds they want but the ones that would be careful cannot get their hands on any. Its very frustrating.
I will say that my Rheumatologist did give me Darvocet, BUT its like popping an excedrin. Its no better. I really need pain meds during my 3 days at the beginning of that time of the month. My hips, back feel like they are being broken and they burn!!!!!!!
Hope
AggrevatedinSD
07-14-2007, 05:47 PM
My doc at the time started me on Celebrex 100 and Ultram 50. Together they worked wonderful, but separately, they didn't do a thing! They didn't make me tired or give me the "drunk" feeling, or hang over effect that so many can. They do take about a week to kick in, but oh what relief! The Darvocet did nothing and neither did the list of other anti-depressants (about 7) that they tried me on.
Theresa
Theresa
AggrevatedinSD
07-14-2007, 05:49 PM
What is an emg...
Just courious!
Thanks, Theresa
Just courious!
Thanks, Theresa
Hope4All
07-14-2007, 09:45 PM
I'm not really sure lol, I think they are testing my nerves......I'll let you know when I actually have the test done.
Hope
Hope
Weasel64
07-15-2007, 11:06 AM
I looked it up for you, but I can't post links to my source. It is electromyography, and myo means muscle. It measures your muscles at rest and contracting.
CJRT
07-16-2007, 09:24 AM
Hi....I wanted to throw in that my abdomin feels bloated alot too. I was recently diagnosed with IBS after the colonoscopy/sonogram and Ctscan.
I also wish I had a Dr that would be more interested in helping my pain. We are all human beings and should not have to deal with bad pain all the time. It seems like the people that don't care about addiction get all the pain meds they want but the ones that would be careful cannot get their hands on any. Its very frustrating.
I will say that my Rheumatologist did give me Darvocet, BUT its like popping an excedrin. Its no better. I really need pain meds during my 3 days at the beginning of that time of the month. My hips, back feel like they are being broken and they burn!!!!!!!
Hope
Well I've started using a different tactic with the doctors and hopefully it will help.
I tell them all that I smoke. I do, have been this time for about 14 months. And when they start in on the no smoking lecture. I say: "well, I know its bad and I'd really love to quit, but as I have NOTHING that helps with my pain, smoking is the only way I can deal with it." That has shut them up, but it hasn't helped me get any medication.
I really do want to quit smoking and most days I don't smoke much at all, but you can really tell the days I have pain as I do smoke more.
I know its NOT the answer, but I also know that it makes it harder for me to quit as I do tend to deal with the stress and pain by having a cigerette. As that is my only option right now, I'm hoping that I get others soon and can quit smoking again.
I also wish I had a Dr that would be more interested in helping my pain. We are all human beings and should not have to deal with bad pain all the time. It seems like the people that don't care about addiction get all the pain meds they want but the ones that would be careful cannot get their hands on any. Its very frustrating.
I will say that my Rheumatologist did give me Darvocet, BUT its like popping an excedrin. Its no better. I really need pain meds during my 3 days at the beginning of that time of the month. My hips, back feel like they are being broken and they burn!!!!!!!
Hope
Well I've started using a different tactic with the doctors and hopefully it will help.
I tell them all that I smoke. I do, have been this time for about 14 months. And when they start in on the no smoking lecture. I say: "well, I know its bad and I'd really love to quit, but as I have NOTHING that helps with my pain, smoking is the only way I can deal with it." That has shut them up, but it hasn't helped me get any medication.
I really do want to quit smoking and most days I don't smoke much at all, but you can really tell the days I have pain as I do smoke more.
I know its NOT the answer, but I also know that it makes it harder for me to quit as I do tend to deal with the stress and pain by having a cigerette. As that is my only option right now, I'm hoping that I get others soon and can quit smoking again.
Weasel64
07-16-2007, 11:25 AM
I work for an NPO for substance abuse, and quite a few people are trying to stop smoking. There's a new med for quitting smoking called Chantix, and it's supposed to be extremely effective at fighting cravings for nicotine. Folks say if you don't try it, you don't really want to stop smoking.
I understand that you might not be ready to stop just now, but when you are, you might give it a try.
--Weasel
I understand that you might not be ready to stop just now, but when you are, you might give it a try.
--Weasel
MSNik
07-16-2007, 12:11 PM
Hi> i did chantix for 2 months, my insurance wouldnt cover it, and its $105 per month...not only did I smoke on it, so did my husband, my brotherinlaw and one other person we know...i did feel less cravings while on it, however the day I ran out of money and couldnt fill the prescription- I started smoking more than ever..
My husand went from 1/2 pack a day to 1 whole pack a day when he stopped and he did it for 3 months..
I went from just under a pack a day to 2 cigarettes a day and then up to a full pack a day..
Maybe its true- we werent ready to quit...however, I only know of ONE person who is doing well on Chantix....and more power to her, since she is doing REALLY WELL on it!
My husand went from 1/2 pack a day to 1 whole pack a day when he stopped and he did it for 3 months..
I went from just under a pack a day to 2 cigarettes a day and then up to a full pack a day..
Maybe its true- we werent ready to quit...however, I only know of ONE person who is doing well on Chantix....and more power to her, since she is doing REALLY WELL on it!
CJRT
07-16-2007, 03:21 PM
I really would like to quit. But even my psychiatrist has said that trying to quit right now would just be setting myself up for failure and then self recrimmination. She is quick to tell me she doesn't advocate smoking, but says that there are times to quit that are better than others. And she says that since I don't deal well with the pain and the uncertainty of what it is I have, that right now probably isn't the best time. But she has encouraged me to put a time limit on it and set a date for wanting to be totally off cigs.
I take Wellbutrin which is zyban and it didn't help me stop smoking. I really am not interested in taking more drugs, especially expensive ones.
I quit with the patches a few years ago and those worked really well for me so when I'm ready, I'll go back to those.
I take Wellbutrin which is zyban and it didn't help me stop smoking. I really am not interested in taking more drugs, especially expensive ones.
I quit with the patches a few years ago and those worked really well for me so when I'm ready, I'll go back to those.
Weasel64
07-16-2007, 05:12 PM
I read an article a number of years ago which said that using two methods of nicotine replacement was more effective than using just one, and that's what I did: patches AND gum. I quit five years ago.
I tried Wellbutrin for quitting smoking (back before Zyban) and found it really cranked up my anxiety level and had to discontinue. I later took it again for depression, but I had to take an anti-anxiety medication as well.
MsNikki, thanks for your input about Chantix. Did you have cravings, or did you choose to smoke regardless? I know it's hard to separate the physical craving from the psychological. I think of the physical in terms of quelling withdrawal symptoms such as crankiness, grogginess, and lethargy. In my mind, the psychological component of nicotine addiction is quite strong too, but it generally has more to do with expectations than immediate need. This is what I do when I wake up, after I eat, or after a roll in the hay :eek:, for example.
Interestingly, Chantix has been so well received that it's now being considered for curbing alcohol cravings.
--Weasel
I tried Wellbutrin for quitting smoking (back before Zyban) and found it really cranked up my anxiety level and had to discontinue. I later took it again for depression, but I had to take an anti-anxiety medication as well.
MsNikki, thanks for your input about Chantix. Did you have cravings, or did you choose to smoke regardless? I know it's hard to separate the physical craving from the psychological. I think of the physical in terms of quelling withdrawal symptoms such as crankiness, grogginess, and lethargy. In my mind, the psychological component of nicotine addiction is quite strong too, but it generally has more to do with expectations than immediate need. This is what I do when I wake up, after I eat, or after a roll in the hay :eek:, for example.
Interestingly, Chantix has been so well received that it's now being considered for curbing alcohol cravings.
--Weasel