How Many of You Have Accepted Your Diagnosis ?

I just thought I would ask all of the members here. As someone who has CFS, I know how difficult it is to accept a "CFS" diagnosis. It actually took me a year to accept the diagnosis, despite the fact that my symptoms were classic CFS and I became ill after a severe 'bout of mono. I can only imagine what it is like for the fibro patients... it must be even more difficult.

I'm glad that there is a lab test that is diagnosing people with CFS and/or fibro. Unfortunately it is still in the research phase... but hopefully will be approved soon. I'm sure it will help many of us with getting more support from our friends & family members, getting benefits, more research funding (let's pray) and support from our physicians.

[bdm92]

Today I saw a new rheumy for a second opinion, he had same dx of fibro.  So now I am feeling convienced, He gave me new sleeping pills another anitinflamatory med and a pain pacth so I am waiting to see if it can bring down my pain level,  
One problem I have is a constant ringing in my ears, does this go along with the fibro?

My neuro surgeon is also convinced, he said when he did my neck surgery that my slim neck had the muscles of an NFL linebackers, they were so tight and thick he couldn't hardly move them around, he said that it has been the same for everypatient that has had fibro, it makes his surgeries so much more difficult, and they always take longer to do.

THe test for fibro that you are speaking of is that a spinal tap?  Be cause I WILL NOT ever let another needle in my back after the bad myelogram that I am still suffering from one year ago today! NO WAY  Just the thought makes me almost cry, when your spinal cord is stabed by a needle it feels like lightening that doesn't end, the first few days the pain was so bad I had thoughts of ending  the pain for good.   That's not a chance I am willing to take again,

TO get to your question yes I have accepted my dx!

bdm92

[PlateletGal]

Thank you for posting ! I am happy to hear that you accepted your diagnosis because I know how so many fibro & even CFS patients are still searching for answers. I know for me anyway, that accepting my diagnosis was part of my healing. It is difficult because  we do share many symptoms as many patients who have autoimmune diseases. I can relate to people who have lyme, lupus, MS, etc. etc. And from reading the research, in my opinion... pathogens are playing a crucial role in all of these diseases (I believe CFS & fibro are diseases... not syndromes).

Unfortunately the test that I mentioned earlier is done on spinal fluid. After reading "Fleetwood" by Mick Fleetwood (Fleetwood Mac.... yeah !) and hearing about what musician Lindsay Buckingham went through after his spinal tap... I refuse to get one as well. I am satisfied with my diagnosis and know in my heart & soul that this diagnosis fits me to a "T", although I don't like it.  = ))

[missruby]

my daughter had been diagnosed with fibromyalgia and she is so depressed and i dont think she can accept the dx.
i have tried to send her forums where she can speak to other people with the same dx. however she has told me not to do that anymore as she doesnt want to talk about it as it makes her depressed even more thinking about it. she wants to try to forget she has it. although i dont know how she can do that as she is in pain almost every day. can anyone suggest anything i could do to help her. i do know what pain is like as i had hepc and rhuematoid artheritis and also vasculitits.i felt suicidal myself,the thought of never being able to do what i once did. also the fear as the pain and swelling just came out of the blue i was so weak i could barely walk and my limbs were so swollen i was getting a wheel chair. however i took the tx for the hepc and now i am clear of it and all the rest of those terrible illness's. i can understand it when she says she doesnt want to talk about it or go on forums. i felt like that myself.but the pain was to much and i needed someone to talk to as i was also so afraid.and it turned out to be the best thing i ever did.as i was encouraged to take the tx for the hepc and got cured. my daughter lives in her own house and im in mine so im not sure what i can do to help her. can anyone suggest anything please.missruby

[patsy10]

No. I would never accept FMS as a diagnosis.  It's a waste basket diagnosis that people get when doctors don't know.  It's just a group of symptoms.  Once people get this diagnosis doctors stop looking for the real problem.

[PlateletGal]

Hi Patsy !

Well that spinal fluid test should be out shortly... for both FM & CFS patients. Researchers already are finding inflammation in the spinal cord & brains in patients who have CFS (AKA: myalgic encephalomyelitis) and a biological basis. I'm wondering though if the pathogens are changing our DNA ? I know that certain toxins have the ability to do this.

I don't have fibromyalgia (at least not primary fibromyalgia) --- but apparently the suggested causes of CFS and/or fibromyalgia are the same:

"Recent research points toward a variety of triggers prevalent in these conditions.

1/ a chronic bacterial infection which has overrun your immune systems ability to cope.

You can be infected through a variety of mediums. The Sympathetic and Parasympathetic nervous systems are compromised and damaged. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

2/ a viral/ chemical exposure which entered your system causing brain and spinal cord lesions, simultaneously leaving the Sympathetic and Parasympathetic nervous systems in a state of chaos. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

3/ a viral/ chemical exposure which entered your system causing a temporary brain injury to the area of the brain that deals with immune response.

Types 1 and 2 will cause the most prolonged type of Fibromyalgia/CFS, with 3 being mostly related to the type of post viral illness PVFS caused by EBV, in otherwise healthy patients this will usually dissipate over a period of 6 months to a year and should not necessarily result in or be classified as Fibromyalgia/CFS.

Fibromyalgia/CFS of Type 1 etiology will have been activated by borellia burgdorferi or a sub strain or a mycoplasmal infection, or ehrlichiosis, babesiosis or a host of other infectious agents. Please note that I use the word activated and not caused.

There is currently a lot of research into Lyme's disease and similar infections as a theory and subdivision of research in Fibromyalgia and CFS.

These infections may present in conjunction with each other and a variety of others which are beyond the scope of this document. If you have been traveling in tropical or subtropical regions prior to onset of your condition you should primarily present at a tropical disease clinic.

For the purposes of this document I am concentrating on viral and bacterial infections which are causing Fibromyalgia/CFS symptoms in North America/ Canadian States and European countries.

Bacterial infections are notoriously difficult to diagnose, they are transmitted by a variety of ticks and insects. Your doctor will most likely not even attempt a diagnosis.

However, and this is key what we are trying to achieve. The core treatment is the same for Fibromyalgia and CFS types 1 and 2, but a separate regime can be added to deal with type 1 which will facilitate quicker overall recovery."

~ Dr. Mark Shaw (author of  “Beat Fibromyalgia and Chronic Fatigue Syndrome")

link for the entire article: http://www.beatfibroandfatigue.blogspot.com/
______________________________________

(if I remember right, Dr. Shaw has CFS and fibromyalgia himself)


It is amazing that ONE tick bite can give us lyme disease and one bite from an infected kissing bug can give us Chaga's disease. Researchers shows that people with many autoimmune diseases, fibro & CFS all have something in common ---- mycoplasmas (L-Form bacteria) and other pathogens, including viruses. Fortunately the treatment that I'm doing covers lyme disease and is helping people with autoimmune diseases.... so if I don't have CFS (which I know I do... it started after mono) ---- at least I'm covered. LOL !

[itsallinmyhead1969]

I just started having an awful sound in my head like crickets and locusts about 4-5 months ago.  I had no idea it was related to fibro until i checked out plateletGal's website.  There are some links on there I went to and looked at stuff. The symptoms they listed for Fibro included the ringing in the ears.  I felt so much better.  It also listed numbness in hands and feet,  and vision problems.  I thought I was going insane until I came here and found these people.  The doctors told me it was all in my head.  I'm at work, or I'd pass her website along to you.  Send her a message, she'll be happy to give it to you. Best regards.

[PlateletGal]

Welcome aboard !!! I'm happy that the information on my website was helpful to you. I created it for every fibro & CFS patient who has been shuffled around and/or needs another physician (one who is interested in treating fibro and CFS). If the information there could help one person, then I'm happy. So I'm happy today !

I also have the ringing in the ears (AKA: tinnitus) I know sometimes physicians miss that on their long list of CFS or fibro symptoms, but it is very common in fibro & CFS. (probably other conditions as well)

[patsy10]

That was  great information you posted above.  I supposedly have both CFS and FMS.  Your info was very accurate.  It fits me to a tee.  As you know, mine is probably caused by lyme.  I have the autonomic/sympathetic nervous system damage as well.  I have constant tachycardia, POTS etc...

[mamita00]

Hi and thank you for your welcome note the other day! As for your question of acceptance of our diagnosis, I was more than happy to accept it. Not to sound like one wanting problems but I was 25 when I suddenly went from walking straight and pain free to suddenly hunched over, severe pains all over and muscle spasms in my legs. Moving was so difficult and I felt like I aged overnight. Fortunately My doctor believed me and did not say that it was all in my head, as some have had the misfortune to experience, and he directed me to an infectious disease doctor. Nothing panned out there but he was pretty sure what it was so back to my pcp for referral and a great rheumatologist. I hate the illness and all that accompanies it but I like knowing what I'm up against. I know I'll accept it one minute, deny it the next, grieve another, it cycles but what are you gonna do? Anywho that's my thought.

[bruce622]

This was a good question, as many people,when faced w a serious illness go thru the gamut of emotions.one of them being denial.It might sound strange but when I came to the conclusion that I had lyme, i felt relief ;at least now I had a label for the reason I felt like garbage. up to that point i didn't have a clue.I didn't know there was such a thing as recurring lyme.It wasn't until recently that i learned you can get dx'd, treated,and have it flare up at a later date.all i can say is thanks for the internet,forums like this one,the grace of God,and the common sense he gave me.  
I know this is a cfs/fms topic site and I went on about lyme it seems tho that along with some others the 2 interrelate.

[PlateletGal]

Hi Bruce,

I strongly agree that lyme, CFS & FMS interrelate. I would also add autoimmune diseases as well.... it's all about pathogens apparently.

What I've found that removing the doubt is part of the cure. Once I accepted my own diagnosis, I could focus better on getting all of the information I could on CFS.

I have aked another member, pasty, to help me with compiling a list of possible conditions that some fibromyalgia patients may have and have been overlooked. I plan on posting this in the health pages section. If anyone wants to add to that list or has any ideas... please let me know. My hopes are that this list may help people with fibro (and / or CFS) finally accept their diagnosis. I just want to make sure that we really have a detailed list and will do my best to do that.

[mamita00]

I know this is about accepting diagnosis but I have to take issue with saying FMS is a "waste basket" disease. Yes I do agree that some doctors may take the easy path and say here you go and look no further but FMS is most certainly its own illness.
I was diagnosed with fibromyalgia 10 years ago, then 3 yrs. ago I was hit with rheumatoid arthritis, followed by sjogren's syndrome, etc. The point being I felt the difference in my body and when first my doctor didn't "hear" me I said it again and then he saw it, did necessary tests and such.  Each flare I feel the difference. I know when it's the fibro kickin my butt and when it's r a . Fibromyalgia is the real problem for myself and millions of others.

[karen717]

I accepted my diagnosis soon after receiving it, but I still search for answers about fibro. My doctor and I talk at each appointment about things we have learned from researching and decide if there is something to try that we haven't already. I think just b/c you have been given a diagnosis is not a reason to just accept it, do what you are told, and go on with your life. Doctors have many patients. You have only one you. You are likely going to be your best medical friend. Your research may find exactly what you need. I can't just sit around and do nothing. There has to be something new just around the corner, and I want to know about it when it happens. Accept it but keep searching.
Karen

[Deedee1975]

I am still having a tough time with the Dxd of Fibro. I was on lyrica when first dxd but i weened myself off of it. It wasn't helping. I was reading you above post about some of the causes. I had RAI a year ago for Graves Disease. Since November is when all my symptoms started do you think the RAI has brought on the Fibro? I would really love to understand more.

Deedee

[Phtartist]

Have I accepted my FM/CFS diagnosis, If I didn't, I wouldn't have my sanity.  Acceptance is the key to my peace of mind.  I do know I have it and was glad to have an answer to my three year search for a diagnosis. This was back in the early ninety's.

Mine started with EBV, then I was weak still fighting that virus when I caught M pneumonaie, then I was tested and mycoplasmal infection was found which might be the pneumonaie, not sure, but I was boraged with symptoms for years. My immune system was fighting these illnesses overtime.  I was having hives from the M Pneu. sweats, fever, weakness, and the EBV symptoms.  CFS was prevelant.  This went on for five or more years.
My Dr. routinely tested me for antibodies and finally about four years ago, I had the antibodies for the M pneumonaie and a few years before that for the EBV.  I have FM/CFS for 15 years now, diagnosed for around twelve, and the fatigue has left me since I have the antibodies for the two illnesses.

What is disturbing is whenever I contract anything, a cold, a bladder infection, an ear ache, sinus problem, I am down for the count.  Completely symptomatic.  Recently I developed a bladder infection and I suffered for two months while the drs. lost my urine, treated me with the wrong meds for it. Tested too soon and said it was clear and it wasn't, waited for urine cultures and now I'm on anti biotics again and finally I am feeling a bit better.  The FM isn't. I'm in the worst flare up ever.

When a cold (rhino virus_)_ enters my system, I don't get it.  I stay sick for about two months with sweats and headaches, weakness, tiredness and aches. All this until my immune system succeeds in beating it

Nothing is helping me.  Muscles relaxers, pain pills, etc.  Neurologically I'm a mess. My skin crawls, burns, sharp pains from head to toe and my muscles cramp up in my neck and around my right ribs. I have a daily headache which no meds can touch, its neurological.  Here's one for ya, my face hurts.  My husband like to lighten things up and says, "It hurts you, its killing me"  It is funny the way he says it.

My face sags when I touch it sometimes.  I tell my Dr.  "Hey, look what I can do".  WHoa, she says, that's talent.  I have to make light, or I'll be very sad.

[kiddthekatt]

Hi all;
    I accepted the diagnoses when my internist told me he thought that I had Fibro. After going to my Rhuemy and after my appoinment with him, I knew for sure that I did have Fibro. I have notced that over the past few months, my syptoms (symptoms) are worse and the pain hangs around longer than ever.
    I feel as though I have something growing out of the top of my head at times, some days I can not get out of bed, thank God those days are few. My skin hurts, my hands feel like they have needles in them, and my feet feel like they belong to someone else.
    I would never wish this **** off on my worst enemy.


gentle hugs
Angel

[patsy10]

I would have to disagree with you.  In my opinion you have 2 real diseases RA and Sjogren's which are causing your fibromyalgia symptoms(syndrome).   They just missed the real problems (diseases) initially because they gave you the waste-basket diagnosis.  They quit looking.  Had they not quit your real diseases may have been diagnosed earlier.

[mamita00]

Seriously, what on earth has made you so hard nosed and negative?  I'm not going to waste any more of my time on this other than to say  my doctors have worked their butts off helping me and trying to get to the bottom of things with me.  I have never presented them with " easy "  issues yet they don't stop looking for answers or they find the right person for me. I'm 35 & have pseudotumor cerebri, r a, fms, sjogren's, high cholesterol, ibs, thalassemia, tachycardia, asthma, autoimmune hepatitis, osteoporosis, gerd , and palmar kertosis. They don't quit on me for anything and my rheumatologist is quick to dig deeper. For whatever reason I am genetically flawed to the nth degree but I am blessed to have great doctors who genuinely care about me.

[PlateletGal]

I can sooo relate to your post. One interesting thing in CFS patients is when they are at their worst... they no longer have symptoms of a cold virus if they catch a cold. Instead, their CFS symptoms will just get worse. If that isn't immune dysfunction, then I'm not sure what is ! ; ^ )

[wait2long]

I came down with the chicken pox at age 32 and was hospitalized for a week, i also ended up with pneumonia at the same time, i was quite sick for sometime, in SEVERE pain (i never knew chickenpox was painful) and had a fever so high i was delerious(sp?) to the point that i took so much advil and tylenol the night before (not remembering that i had already taken 800 mgs of advil, so i took 800 mgs more, and did the same thing with the tylenol, repeatedly) being admitted the the hosp. that i made myself even sicker...i remember this day well, i actually got up, got dressed and thought i was going to work, my husband giggled and asked me what i thought i was doing and where i was going, as i sat on the front porch in the sun, in 93 degree weather, with a sweater, long pants on and covered with a blanket just shaking from how cold i was.  well needless to say, i have been diagnosed with FMS/CFS and i am on the severe end of the spectrum...i accepted my diagnoses IMMEDIATELY, as they could find nothing wrong with me, RA runs in my family, as does eczema, and both my parents contracted lymes disease while living on Long Island, NY where it is rampant.  i was tested for all of this along with lupus and some other things as a precautionary measure...so FMS/CFS is my diagnoses. and it was with GREAT relief when i heard it, as i was sick to death or hearing that it was because i was depressed, or needed to lose a little extra weight, or get more exercise...but it didnt matter, i would lose some weight, start a new antidepressant, started walking...made no difference, except made it worse when i "walked too much"  doctors even set me up with physical therapy because of the stiffness i had in the mornings, my husband literally had to and still does on occasion have to help me up to a sitting position in the mornings, IT STINKS!  but since being diagnosed, i am NOW able to deal with the symptoms and learn about it all i can.  and to also know that my limbs werent going to just start dropping off at any moment with no explanation was a plus!...i am also a licensed cosmetologist and Realtor, constantly being exposed to all kinds of chemicals in both professions while i was working...my symptoms are on the severe end with debilitating flare ups...i am also a recovering addict with suboxone treatment in hopes of getting pain relief as a benefit from the suboxone, not happening....
now that you have some of my background...is it possible that all these factors played a role in my FMS/CFS to be on the severe end of the spectrum, or does that not have much to do with it?
i know your not a doctor, but also know you know your stuff, any insight would be great...thank you.

[Jac567]

I am uncertain about accepting any disease, but part of me is relieved because I have a label and Fybro fits all the symptoms. I need to educate myself about this illness. I also have hepatitis and recently Hypothyroid.... the Hypo has only been diagnoised and I am unsure but think that my current treatment (week 31) of interferon therapy may have excerbated symptoms. Hypothyroid is really new to me and I have to say part of me is a bit apprehensive about this. I suppose I am accepting of my condition because I have been tested for everything and it is a process of elimination before they can truly say. I suppose I will not know for certain until I finish current treatment and then re assess things.I see people talking about having a virus and autoimmuned problems. I did have a condition earlier in the year called pityriasis rosa and I have not been well for about two years. Currently off work (One Year). I am hoping to get my pain under control so I can get my life back. Only recently having fybro pain and hopes it calms down soon.

[PlateletGal]

Hi ! Welcome aboard !! I'm glad you are here and hope the responses keep coming. I can tell you that many people with fibromyalgia and CFS have a thyroid problems (low thyroid), but the standard blood tests fail to pick up that abnormality. You can find that information on our Health Pages (located to the right of the screen).

[Humminbyrd]

Your daughter is in denial.  Sometimes denial works for awhile but it is hard on everyone else.  I have seen people in denial go into remission their denial was so strong.  I think that the only thing that you can do for yourself and your daughter is go along with her and wait for her to come to you.  When and if she does come to you tell her that she needs to take a "Chronic Condition Self Management Course".  I took one and it changed my life.  You could search for one in your community now so that you will have it ready to tell her about it.  You could even take it with her.  You could make it "a girl's afternoon (or morning) out and would probably be a good bonding thing for you both.  Anyway, the best of luck to you both.