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Fibro. I Am Not Buying I Have It.


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#1 Patty

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Posted 26 July 2007 - 04:02 AM

I know that many many people have fibro but I am not buying that I have it because pain comes with sclero and DM. How can a dr tell if my pain is fibro and not DM or sclero? I just dont get it. I really think that saying I have fibro gets her off the hook for pain meds for me because most won't treat fibro with pain meds so I get to live in pain. My paxil was increased to 40 MG to see if that will help. Only thing I notice so far is I wake up more tired then I was when I went to bed.

Has anyone else been told they have fibro also and dont buy it? I am wondering how many people they are pushing off onto fibro. If they say fibro then they dont have to look harder for a couse of our pain.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 CraigR

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Posted 26 July 2007 - 06:24 AM

Sounds like you need to find another doctor, if your pain isn't being treated. Pain is pain, regardless of the cause. Have you considered a pain clinic?

Craig

#3 Patty

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Posted 26 July 2007 - 07:53 AM

Yes, I called the pain clinic and I am waiting on them to call me back with the date of my first appointment. They better hurry and call me as I called them last Friday!
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 nan

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Posted 26 July 2007 - 10:09 AM

Patty,
Did you doctor test the 18 tender points in your body?
Nan

#5 Rachelle

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Posted 26 July 2007 - 11:17 AM

I agree that Fibro can be an easy out for doctors. All the doctor usually does for it is prescribe anti-depressants. They hate so bad to prescribe pain killers. I know there is a big drug problem, but they can generally "read" the average addict and avoid prescribing to them. They can tell if they have patients who are legitamately in pain and can monitor that they are taking their pain meds responsibly. It is ridiciulous. As many times as I have went to different doctors for my ulcer while it was infected, at least 3 have asked with a knowing look "doesn't it hurt?" I said yes, but none offered a solution for the pain, not even recommending an over the counter pain reliever.

#6 Elehos

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Posted 26 July 2007 - 11:43 AM

Hi Patty,

I also believe that the diagnosis of fibro for far too many people is just laziness on the part of certain doctors. When I went to a fibro site for more info, there are so many different symptoms that you could have that it seems to me that many with this diagnosis could be very seriously ill, but the doctors don't want to investigate. One rheumatologist refused to examine me at all, didn't look at any paperwork from any of my doctors, no MRI's, CT scans, etc., all which show physical damage to joints and connective tissues, then said, "It's just fibro" in less than 5 minutes in his office. Another rheumatologist recently poked most of the 18 points, and even without any pain or reaction from me, he said it's probably just fibro. He didn't look at the MRI's, etc. either!

My comfort comes from the fact that two other doctors that have known me for at least 12 years know what's going on in spite of the flippant diagnosis handed down. Are there any other doctors that you can go to, or pain clinics that might investigate further? It's amazing that the HEALTHY ones are trying to tell you what illness feels like, and my blood boils when this happens!!! I'm sorry that you're being dismissed, but do hope that you find a doctor or clinic that is willing to help.

Hugs and best of thoughts and wishes to you,
Elehos

#7 jefa

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Posted 26 July 2007 - 01:13 PM

Hi, Patty. I understand your frustration in this situation, but a diagnosis of fibromyalgia doesn't necessarily mean that you don't have DM or sclero, nor that it is the only source of your pain, if in fact you do have it.

My 80 year old mother has suffered with fibro for a very long time and she has received numerous treatments including a variety of anti-depressants, analgesic-NSAID combinations, muscle relaxants, short term courses of prescription pain relievers (she doesn't like the side effects and worries about addiction), acupuncture and massage therapy. None of these things really does the job for her. I think talking to me on the phone helps as much as anything.

The Mayo Clinic article on Fibromyalgia says that having a rheumatic disease may make you more likely to have fibromyalgia, so we shouldn't be too disturbed when our doctors suggest this as a possibility. The section on Causes is particularly informative, explaining how the brain receptors become more sensitive to pain.

Nan has asked about the 18 tenderpoints. According to ACR guidelines, you must have experienced widespread aching pain for at least three months and have at least 11 specific locations responding as tender with firm pressure.

Craig makes valid points. I hope you hear from the pain clinic soon. It seems like it takes forever to get an appointment for anything these days.

Rachelle and Elehos - There seem to be so many levels to the quality of care from doctor to doctor. We've all had some who don't seem to care and some of us have been lucky enough to find one who works with us all the way. I can't imagine what it would be like to be on the other side of that desk trying to diagnose with so little time and information and keeping everyone happy and well. We owe it to ourselves to get informed and fight for ourselves. As the patient, we are in that unique position to keep our own needs at the forefront.

Sorry to be so long-winded here. Some days I just want to give everybody a big hug.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#8 Patty

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Posted 26 July 2007 - 04:41 PM

Nan,

Yes she checked me all over. What caused her to check was because the intern had touched me and I said it was sore then when sh came in she touched me in th same place. I said something to the in tern and she must have been listening because when I was saying how much pain I am in and she finished reading my chart she jumped up and started to check me.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#9 CraigR

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Posted 29 July 2007 - 08:53 AM

This fibromyalgia issue is interesting, especially in relation to scleroderma. I get occasional myalgia pain, mostly on my left side (?). Sometimes it is bad enough to make breathing quite painful. Usually (but not always) it follows exercise or stress, and usually includes fatigue. It seems to start around my left shoulder and travel down the left side of my chest My rheumatologist says that it may be some fibromyalgia-like condition. However, I have an elevated Sed rate, which I understand is not supposed to be the case in Fibromyalgia. So, like Patty, might this be some misunderstood aspect of scleroderma/autoimmune disease? Very strange.

Craig

#10 Elehos

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Posted 29 July 2007 - 11:59 AM

Hi Craig,

I have the same trouble with breathing, on the left side also but it travels down the back, and myalgia does come along with sclero as well. Why a doctor would throw in fibro after the other autoimmune issues have been diagnosis'ed is odd since they usually start at that point then progress to something more definitive. My blood work still seems unclear in certain areas, but nucleolar pattern ANA with a 1:320 titre doesn't fit fibro at all, yet the rheumies I've seen don't want to look into anything more for the moment. It's not so much the additional diagnosis that's a problem for most, but that too many doctors seem unwilling to help their patients with the pain. Fortunately, I've got a doctor that does, but that seems to be a rare bird these days!

Best wishes to you,
Elehos

#11 Patty

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Posted 30 July 2007 - 01:17 AM

Hi and thanks everyone for your replies.

I did a lot of reading on fibro and well I really may have it. I guess I was so upset because after getting a diagnosis of sclero and DM I never thought that I would get this diagnosis also. After thinking about it, it really may be a help to me as I want to reapply for social security so one more chrionic illness can't hurt that I guess. Also, its not like now that she said I will be sicker then I already am.

So anyway I am feeling better about it. Thanks again everyone!
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#12 Sweet

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Posted 31 July 2007 - 02:12 PM

Hi Patty,

I'm a nurse and I have to say that over the course of my career I felt Fibro was a cop out. However, much more research and information has been found on this disease and I believe it's a real thing. I do feel that some doctors are quick to say someone has it because they themselves are at a loss as to what is wrong with the person. Just this last summer my primary care physician told me I had it as well. My first reaction was "I do not" but the more I research it, I believe he's right. I have Lupus, Sclero, Sjogrens and now Fibro. The last two diagnosis just rolled off my back. I quit worrying about what I have and just try to live each day as best I can in the most positive and gratifying manner.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 WestCoast1

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Posted 31 July 2007 - 04:16 PM

Hi Patty,
I was told once that I had Fibro and was treated with Flexril and told to do Yoga. HHHMMMMMMM....I never really believed it, I just thought that they were tired of looking for the cause of my illness and labled it "fibro".

Since then, I do think that I show symptoms of fibro, but it is not life threatning and not really treatable so I usually ignore that past diagnosis and just deal with the other stuff.

How have you been feeling lately?
*WestCoast*

********

#14 luvbnmom3

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Posted 17 August 2007 - 03:16 AM

I was told "Let's just call it fibromyalgia for now" & put on an NSAID for pain... which I read painkillers don't help with it, but who knows. I didn't meet the criteria as far as the pain points, I had 7 or 8 I think the first appt. & none the second (1 month of NSAIDS). I don't buy the Fibro bit at all, maybe as a result of some underlying issues, but fibro isn't what's behind all that pain I was in before taking the NSAID or the clubbing fingers or the pitting edema in my legs & eyebrows (In the morning, I can push in/up undermy eye brow for a few seconds & that eye brow will stay up from the fluid in there), or the dilatated & irregular nailfold capillaries, or the tight skin on my knuckles & backs of hands, or the dry eyes & mouth, or the tight skin on my calves & the patchy hairloss there, etc.

For me, I've decided to educate myself, take precautionary measures, not worry about the diagnosis for now & just have a heads up for stuff. Like, I noticed my Creatinine levels increased consistantly over 10 months & my eGFR dropped aroun d 2.5ml a month for 10 months straight. I also had petechiae on my toes (in the same spot where it taqkes forever for color to come back to them & where they are ususally blue) & I read NSAIDS can affect both kidney function & can cause petechiae. I quit the NSAIDS & I no longer see the petechiae. Coincidence... maybe. Either way, I don't rely completely on the doctors. If I think something might be going on, I take precautionary measures regardless of what the doctor says unless they have solid evidence. BUT.... I do this with in reason... things like stopping the NSAIDS, increasing water intake, cutting back on caffeine, stretching my hands, keeping skin moisturized, etc., but I wouldn't do anything that should not be done without a doctors go ahead.

#15 tintin

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Posted 17 August 2007 - 06:49 AM

Given that you have been diagnosed with Limited scleroderma, you do not meet the first screening test for fibromyalgia:
"You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia." I don't think you doctor is doing you any favors by lumping on additional diagnosis that just confuse the main cause of your problems.
keep on smiling

crawler

#16 jefa

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Posted 17 August 2007 - 06:55 AM

As I mentioned to luvbnmom in another thread, crawler (and to Patty in post 7 of this thread):

The Mayo Clinic article on Fibromyalgia says that having a rheumatic disease may make you more likely to have fibromyalgia, so we shouldn't be too disturbed when our doctors suggest this as a possibility. The section on Causes is particularly informative, explaining how the brain receptors become more sensitive to pain.

Hugs to all of you, though. The whole process is frustrating, isn't it?
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#17 luvbnmom3

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Posted 19 August 2007 - 02:38 AM

I believe for certain it is possible to have it, but I disagree with the doctor implying it's [all] due to Fibro & then not having a patient come back now & then to check up on them when they have signs of other things going on.

I know Fibro is a real thing & I know of people that have gotten fibro as a result of cancer, other autoimmune diseases, etc. So, Fibro I think can explain symptoms in addition to other diagnosis, but I don't like it when doctors use it as a catch all when they don't have an answer.... like they often do with depression, especially when you don't even meet the criteria for that diagnosis.

One thing that does make me wonder about haing it is the fact that the tops of my feet are unusually sensitive to... this may seem weird, but when I wear my rubber sandals (those popular ones with the crocodile on them) if any pieces of grass or anything get stuck on the upper inside, feels like I'm getting poked but anywhere else on my skin those pieces of grass are nothing. That seems to me like an over sensitivity-fibro type thing.

#18 tintin

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Posted 20 August 2007 - 12:05 PM

jefa,

I didn't mean to sound so negative, and I do understand that pain perception is a nuro-chemical thing, and so can be quite disproportionate to the actual physical damage. I also believe that Fibro is real, but since doctors don't understand it very well many things get lumped under the single heading, making treatment somewhat confused.

I guess what I was trying to say, is that if there is a more well understood disease present that could well be causing the symptoms treat that first. It seems to me that most of the Fibro symptoms are also Systemic Sclerosis symptoms. Muscle pain is common for lSSc patients. For muscle pain of lSSc one might try Hydroxychloroquine, which might not be the first choice for Fibro.
keep on smiling

crawler