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Self diagnosed?
13 Replies
islandguy - May 31

Fibromyalgia was a term for medical personell to use as a wastebasket diagnosis. If it hurts and the doctor can't explain the pain you have (in the past) put the phrase of fibromyalgia in front of the patient to satisfy them with a 'PROBLEM".
Most people that have been diagnosed with fibro by the proper channels have heard the "I have a pain in the shoulder" "the doctor said it was fibro" story.
I have been put off a bit in the last while by a lot of people telling me they have fibro or know someone with it. When I hear their story it is obviously a wastebasket diagnosis by the doctor or a self diagnosis. The criteria is posted and available .... fibromyalgia a real disease. It hurts like 'heck' and it will put you down for days at a time.
If you are unsure if you have fibromyalgia check with a rheumetologist and they will diagnose you. You're general practioner is the least likely to be accurate with the diagnosis. If in fact you don't have fibro don't with to have it.....for those of us that suffer daily, hourly, wish it upon no - one. Remember there is no cure. Read up on the disease remembering that some symptoms mimic other problems and please don't self diagnose. You may be missing out on a bigger problem.
To all my fibro friends....huge gentle hugs..... we all know how we feel hourly !!! Some days are bad and other days are horrible!!!
Take care of each other and keep posting....


linda brown - June 17

good to hear from you!!! you are so right; I too feel like too many people are getting told they have fibro and hearing about how they can work full time from other people. If they have the symp we have with this, there's no way they could work!!! They (docs) should at least stage the fibro because it's all too different. It makes people think that we can't hurt this much or be this tired, but best of luck and keep posting...


Gabbie - June 17

I can't agree with you more. There are many tests that need to be done to rule out any other problems since fibro does mimic other things. Starting with a rheumatologist that is familiar with fibro and BELIEVES in it is essential because those of us with it know that it is very real. I'm glad to see you are still visiting this site islandguy and hope you are doing as best as can be expected.


Jen C. - June 17

Does anyone besides myself in this forum work full or part-time?


Jen C. - June 17

I have had every test done and my diagnosis has been confirmed by 2 excellent rheumetologists. Most people with Fibro CAN work it is just a struggle and it also depends on how long you have had it. I have to drag myself out of bed in the morning and am in agony all day but unfortunately I don't have a choice but to work because I have bills to pay and I highly doubt that SSI would grant me disability due to being so young even with my extensive medical record.


Gabbie - June 17

Hi Jen C. I work part time in retail and yes, it is sometimes a struggle but I have found that I actually do better when I push myself to keep going. I also babysit 2 days weekly for my 2 year old grandchild who always brings a smile to my face. Believe me, it's not easy because of the pain, but I found that if I don't keep a balance of activity and non-activity I have even more pain because everything stiffens and then I move like a snail. When first diagnosed, I allowed myself too much inactivity and I also let the depression in and found that I actually had more pain. I finally worked through it and decided that I wasn't going to let the fibro win. For me, trying to live as normally as I possibly can gives me the strength to keep going, both physically and mentally. I would encourage you to keep working as long as you can. I wish you well.


islandguy - July 1

I believe that some day "fibromyalgia patients" will be categorized. I, for one, could not even think about working. Impossible and not only that but I would make a horrible employee. Obviously there are different stages from mild to severe. For me to look after my granddaughter or grandson for an afternoon would be welcoming but certainly impossible. I simply could not.
Push myself beyond what my body is telling me is only a recipe for oncoming bed rest. I take my hat off to those that can function normally (somewhat) I am one that can't. Take care


JJ1 - July 2

I consider myself very lucky that I do not have the severity of symptoms of some; however, I do have Fibromyalgia. This is not a cookie cutter disease. Some like me are able to work full and part time jobs and spend a good part of our lives pain free. Others are not so lucky and there are a bunch of people in between. I do have other symptoms that I find extremely dibilitating mostly that my cognitive abilities are greatly diminished. While I can still work full time, my career is at a standstill and probably in jeopardy with the current economic state. Having variation in the severity of an illness and how it affects different people is common with many diseases and not something specific to Fibromyalgia. It helps me to force myself to get up and take a walk each evening or go for a swim but I recognize that this is not a solution or even a possibility for everyone.


JJ1 - July 2

I wanted to add that I am not self diagnosed (title of this thread) but have been diagnosed by two different rheumatologists.


Gabbie - July 2

I have realized that there are different degrees of fibro symptoms and intensity of pain. From what I have read, I believe I fall somewhere in the middle on a daily basis and I am never totally pain/symptom free. Sometimes I do have a flare with everything running at full force. My intentions were to try to encourage others to attempt to keep going and not to trouble anyone with my sometimes "happy-go-lucky" writing. Believe me, behind the smile and upbeat ways, I experience some very bad days of fibro and am lucky to have a husband that can help on those days. I found this site about a year ago after being diagnosed by a rheumatologist. When I was really down and out and read about others with fibro, this forum really helped to lift me out of the hole I was hiding in. Learning there are others who know that fibro is very real helped me through my most difficult times. Now, I try to stay upbeat (I wasn't always) and in turn try to "talk" that way when I post on this site. My intentions were to support others and share, If I have offended anyone, please accept my apologies.



islandguy - July 2

Well I see I got somebody's attention. All I wanted to do was point out the fact that I am sick and tired of barely being able to hold myself up on two feet from the burning pain to have someone come up to me and say. "Oh, I also have fibro but I manage to cope" as they skip along the street. Another one told me recently that he had a shoulder pain and his doctor thought it may be fibro. Duh! ... I think that if the people are not properly diagnosed by the professionals then they should be. Doctors get tired of the same person coming in (looking like a hypocondriac) and so they give them the fibro diagnosis label to appease the patient and keep them from returning.
It is human fact that some people "need" to have a disease. (my pain doctor told me that one). Patients run around telling everyone of their new found illness for recognition. I know how crippling the disease is and correspond regularily with fibro patients in wheel chairs and scooters. Their days are not quite as upbeat as some. I am not underminding anyone's post nor do I intend to be disrepectful to anyone. Let's hear from some of the people that can't work and suffer beyond the norm.
Surely not everyone on this forum is working part time. Goodness I am afraid to hold my grandson in a standing position for fear that the pain will overtake and I will drop him. This is everyday !


JJ1 - July 3

I found your post highly insulting islandguy. What is your point? That some of us aren't as worthy as you of the Fibromyalgia diagnosis because we don't bear as much pain? Are you suggesting that those of us not in as much pain as you are just hypochondriacs? I am not following this reasoning. I think you must be going through a difficult time with your illness and I wish you well.


JJ1 - July 9

I have been away for a few days and really feeling bad for being rough on you Islandguy. I know you meant no harm. Sorry.


kathleen Paterson - July 10

I would like to say to islandguy, that I have been suffering this dreadful illness for 3 years. I work full time and it is the only thing that keeps me sane . I suffer immense pain everyday , and at the moment even sitting at my desk I feel as if I have an elephant on my back for company. I have a constant pressure in my head as if someone is sitting on top of it .When I sit too long my body vibrates, so I have to get up and walk around , when I walk around to long my muscles are like concrete. I tried sitting at home but I feel you have to much time to think of whats going on in your body .I suffer from chronic headaches everyday , neckpain ,even sore fingers from typing. I always feel dissorientated.
I have to drag myself up in the morning , I could easily lye in bed forever but feel as if my body is going to paralyse if I dont move, so I personally do not think if you are able to work you cannot have fybro.



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