Fibromyalgia Community
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662361 tn?1225334507

How long did you wait for your Fibro Diagnosis?

Cross posted from another site to save on typing:

Hello Everyone. This is my first post here and I'm not entirely sure what to say. I've been a member of another forum over the past two years for Hyperemesis Gravidarum (a life threatening condition of pregnancy that basically caused my body to violently reject all food and drink for the duration of my pregnancy). After giving birth to my daughter (now 18 mo old), I've progressively gone downhill in my health. Symptoms that were once merely an annoyance have become debilitating. Several members of my HG boards have also recently been diagnosed with Fibromyalgia so I suspect (as do they) that our pregnancy conditions were likely a trigger. My physician keeps putting me off for a legitimate check. So far my Thyroid has been checked ("within normal range"), Lupus came back negative as well as various other tests that I'm unaware of what they mean. One thing that came back was a very low Vitamin D level - not sure what that means.

I feel really awful, like I am living with a perpetual flu. My body aches so bad sometimes that I just want to cry. My joints get shooting pains, my hair is falling out in large masses (clogging the vacuum cleaner and drains and can be found virtually everywhere), I'm SO tired all the time and with my four children (three of which have disabilities), I'm struggling to keep up. And then there are the other issues....so far my list is long but the most recent symptoms are the ones that are causing me to feel as if I'm losing my mind. Below are just a few of my ongoing symptoms:

Recent Symptoms (within the last 1-3 years)

- Short term memory loss or difficulty in recall from only minutes before. Forgetting parts of conversations or answers to questions I had for someone, etc. Forgetting entire conversations in some cases.
- Speech changes – stammering, slurring words or mixing sounds of several words at once (like having verbal dyslexia??? If there is such a thing?) – reading (especially aloud) is nearly impossible.
- Periodic confusion or hard time concentrating – lasting several minutes sometimes. I often struggle to grasp & retain information if it is too long to read through/more than a paragraph. Verbal instruction can cause similar problems and often have to be repeated back a few times. Driving has become dangerous: I have found myself in a foggy version of “auto pilot”, forgetting how I got to where I am, etc. I do not feel safe driving anymore. This is a HUGE disruption in my life!!
- Inability to think of words (esp. nouns) when speaking. My family has grown used to playing a twisted version of charades when trying to communicate with me. Often I have to point, or give adjectives to describe the thing I’m referring to.
- Sunburn easily (within minutes & even through clothing – followed immediately by horrible muscle aches & fatigue as if coming down with the flu)
- Hair loss (thinning hair, it used to be thick) – Thyroid tests already done and deemed “normal”
- Frequent achy muscles in shoulders/neck/back/arms
- Unexplained “pains” in upper arms, calves or thigh muscles that come and go – feels as if I had a fresh work out the day before but I didn’t
- Often feel as if I’m “coming down with something” but rarely ever get symptoms of anything significant
- Muscle & joint stiffness after resting (mornings are especially bad or after sitting for long periods of time)
- Joint discomfort or stiffness - particularly feet, knees, hands, elbows, shoulders (worsened in the last 1-3 yrs)
- Light sensitivity (visually)
- Extreme Fatigue – no matter the amount of sleep. It hits often mid-day or after any ounce of exercise
- Anxiety – not always stress induced, sometimes I feel panicky for no apparent reason at all

Anyway, I'm struggling to get in with my physician - the appt this time is over a month out still. She knows that Fibromyalgia is a concern and even stated so in her last letter - she also has been aware at how miserable I am, but no sense of urgency on her part to get to a root cause and a remedy to some of my symptoms. I'm really hoping that I can find support here and elsewhere so that I can get some guidance as to what I should be doing. I am feeling pretty helpless right now. Thank you in advance.
17 Responses
553995 tn?1332018840
I am so sorry you are suffering so severely. It troubles me that your doctor has you waiting so long for another visit.  
If you cannot call her office and express to them the serious need you have to be seen soon and be heard, then you need to see another doctor.

Every time you go to the Dr. ask for a copy of your tests for your own records.  You may not know what they mean but you will learn or your next Dr. will know.  It will also save you from repeating tests.

I can not diagnose you but I can tell you it took years for me to be diagnosed.  Back in the 90's FM was not a common diagnosis.  Today as then it is a diagnosis arrived at by elimination of other illnesses it could be.

To expedite your diagnosis, if you have insurance, on another thread I've listed a recommendation of tests that if taken, should give you a good idea if it is Fibromyalgia or not.  

I do identify with all of your symptoms especially the "noun" thing.  That and memory going blank in the middle of conversation.  Plus all the rest.  I had beautiful hair and now, forget it.  
I was very active, worked hours on end on my feet and now, forget about it.

I have headaches, before meds that help me with them, I had four migraines a week and after meds that lessened the migraines I had a chronic daily headache for years.

Are you on any medicines?

662361 tn?1225334507
No, no meds. I'm really hoping for a more homeopathic approach to start with. I've had a lot of issues w/ drugs in the past (and the companies that make them). My kids are all on the autism spectrum, ranging from mild to severe and it definitely heightens a parent's awareness as to what should and shouldn't be tried first when treating a medical ailment.

The headaches aren't the biggest issue for me (yet). I've struggled with migraines on and off since I was a teenager (now am 32) and have learned how to 'deal' with them as best as I can w/o meds - that is, as long as someone else can take the kids out of the house, I have a bucket nearby to wretch in, and I'm allowed hours to whimper to myself. LOL

Really, it's this chronic feeling of having the flu every moment of the day that gets to me and having the cognitive issues. The aches and pains are now interfering with my quality of life and the cognitive issues have just added to that stress as I no longer feel like myself.

I will definitely get the test results as well as a copy of my medical file. I put in a call to my insurance (I'm on state assisted medical because I'm unemployed and am low income), they called the medical office to help 'nudge' the Dr to do her job and get me seen sooner or at the very least, refer me to a Rheum to see me asap. If that effort doesn't go well, I'll obtain a full copy of my medical file and move to another clinic entirely. I just worry it will slow the process even more.

I'm also looking into the possibility of SSDI - it looks by the sound of things from other stories that it's a nightmare process and likely one I'm not going to pursue anytime soon. Baby steps are about all I can think of and the Dx is my first priority.
664307 tn?1228096767
Sounds like you could have the classic symptoms.  Have you gone to a Fibromyalgia specialist or Rheumatologist?

It took years for my diagnosis of Fibro.  My doctor's were actually starting to get me to believe that it was all in my head (with the exception of the extreme pain telling me they were wrong!!!).  I didn't get diagnosed until October last year (after 7 years), and that was 2 years after I was stricken with Meningitis and my mobility took a nosedive.

My recommendation is to make lots of calls.  Only choose a doctor you feel comfortable with, and will take your pain seriously.  It's hard enough living with this condtion, to have to turn around and be treated like a big baby because you're in pain.  Don't let them do that to you, it happens way too often.

Good luck.
662361 tn?1225334507
No specialist or Rheum yet - have to wait for a referral and my Doc is taking her sweet time because she has too high a patient load. I've been trying to get in for same-day appts daily - nothing so far, was told there may be a chance this Friday. The micro-managing of my family's lives is so painstakingly time consuming as it is. I sometimes feel like my issues may not be so bad had I not put my own health last. I have four children altogether, ages 12, 10, 7, and the baby (18mo). My 12 & 10 yr old children have Autism at polar opposites of the spectrum, my daughter being severe (10) and my son being so slight it's only noticeable by the trained eye (12). My 7 yr old daughter has PTSD and we were recently told she likely has ADHD as well. What with their disabilities, the homeschooling I do for my 12 yr old, the therapy appts for all of us (the older kids and I were victims of domestic abuse for years before I left my former husband), and now the toddler to care for - my health just hadn't been a priority until my body literally broke down and screamed at me. Of all those things tho, the outside stressors (money, the ex-hubby's pranks, fighting w/ insurance companies to pay for medical treatments, etc) are the hardest things to get rid of and certainly the most impacting on how I feel from day to day.
664307 tn?1228096767
Seriously, call your doctor today and DEMAND that she send you to a Rheumatologist or someone who specializes in Fibro.

Nobody's sure of it's origin, but stress, ABUSE, trauma, and others are all factors that they believe can bring on Fibro.  Go to http://www.fmaware.org to see the symptom checklist, and to see if any of that sounds like it pertains to you.

And tell your doctor, no more dragging the feet! You're in pain for Pete's sake!
662361 tn?1225334507
Yep, I have all of those symptoms. I've been complaining about them for a few years, some of them. The fatigue has been a consistent problem, one I've passed off repeatedly for various other excuses. The "other" symptoms I have a few of as well - also for a number of years. The bottom line is that I've complained about most of my symptoms separately, as they are most problematic for me. Not once had a doctor (any of my previous 4 doctors) even uttered Fibro as a possible cause - not since I was 19 and it was out-ruled as a "hormone imbalance" after a laparoscopy deemed me to not have any signs of Endometriosis.

I think most of my quack Dr's have just passed me off as a hypochondriac and left me to fend for myself - now that I'm over the HG (www.helpher.org) my body just isn't bouncing back and in many instances, I feel worse than before the pregnancy.
664307 tn?1228096767
Unfortunately, that's how most Fibro patients get treated.  A lot of doctors don't believe that this is real, however, the first time they felt this way, they'd turn over the planet to find what's wrong, and how to fix it.  There's only one doctor (that I know of) that knows what we're feeling.  Her name is Devin Starlanyl.  She has a book, and a website that covers Fibromyalgia and Chronic Myofascial Pain (something else I have).  Read up on this condition as much as possible, you'll most likely know more than your doctor will.

Too many times we are left feeling like we don't deserve to be treated like a human being because people don't understand what we're going through... Just because we LOOK healthy, doesn't mean our condition allows us to FEEL that way.
553995 tn?1332018840
Oh my dear, you do have your hands full.  Home schooling your child with Aspbergers then having an Autistic child and two other children, dealing with the scars of abuse and your other child who also suffers from the abuse and a new baby, it is no wonder you can stand up!!!!

I am a victim of an abusive husband, it does a job on you!!  

I know that constant flu feeling.  Have you been tested for Epstein Barr Virus commonly known as Mono?  That is how my FM started and being I was stress worn, I was run down.  I was working full time and partying full time to shake off the pain.  I was knocked on my behind severely with this never ending flu like illness.

Have you contacted social services to get help with your children?  I know you qualify because I happen to have a friend who has an Autistic and an Aspbergers child and the state of NJ, has given her home care and tutors and after school buddies to keep her children busy to give her a break.  All these services free.  Look into it, especially since you are sick !!!
553995 tn?1332018840
The Devin Starlanyl books are excellent!!  The Fibromyalgia Advocate is the best helper I have in my pocession, as far as helping me deal with the illness of FM.  

Be good to yourselves, Take a hot bath. with bubbles :-}
662361 tn?1225334507

I've had mono multiple times - beginning at the age of 11. At first Dx, it was severe and kept me out of school for nearly 2 months causing a lot spleen swelling, etc. Every Doc I've had since then has argued that you can't get Mono more than once. EBV was considered multiple times over the last 8 years or so but at that time, our insurance kept changing, causing me to have different doctors nearly every 6 months. I finally gave up on begging for answers as it was too hard to micromanage and take care of my kids, myself, and all the other needs.

Social services has been a joke here in Washington. In Oregon, where we lived before, we had respite care as well as in-home personal care for my daughter with the profound Autism. Here we get 64 hrs of In-home personal care and it is limited so much that they're not really allowed to do much of anything except give her baths, dress her, and help her toilet....and how much time do you think that really takes up in any given week?? It used to be that her bedding, laundry, and meals were handled too - a huge help that is now gone when I need it most.

My son and other daughter do not qualify for services and the wait list for Respite care in Washgington (we were told AFTER moving here and being promised the "same services" that we'd been receiving in Oregon) is 8-10 yrs. By then she'll be out of the DDD program.
665692 tn?1294010306
First let me just say I LOVE the detail you were able to put into your S&S's list. I felt like I was reading a transcript of how I feel!  

Anyway's it took me actually over 5 yrs to be diagnosed.  Why, well as with your Dr. the one's I saw didn't want to diagnose me with such a controversial illness.  As you may know most Dr's still insist it's all in our wee little heads.  I so wish it was that easy!!!  

But your Dr. may just be afraid that her other Dr. friends will laugh at her if she says you actually have Fibro.  You may simply need to do as I did, get a referal to a Rheum. Doctor in order to get your diagnosis so you can start treatment and start feeling a bit like your oldself again.  As I say now "every bit really does count!!"  Good luck, I hope you find help soon!
662361 tn?1225334507
That list is only the tip of the iceberg actually. I've got 3 pages to follow that list, including symptoms I've had for approx 5 yrs, ongoing symptoms from my early teens, known diagnoses, known family medical issues, and a list of things I want to be tested for.

We've already sort of been through the whole, "Dr thinks I'm a nutcase" scenario with my last pregnancy. I was deathly ill, vomiting uncontrollably and violently, and the Dr's and nurses kept telling me that it was going to go away (after losing 21 lbs by the 2nd trimester). I had to have my DH demand that they treat me for my ailments and finally they gave me a PICC line so that I'd stop losing weight. By then, my body was worn out and my esophagus was raw from all the acid. I have damage to my vocal chords now due to all the wretching, and my teeth have 27 cavities (which have yet to be repaired). In any case, most people don't know about HG and the few who do usually compare it to morning sickness - which it is not. Many doctors don't treat it properly and if gone untreated, miscarriage is inevitable and death of the mother is probable.

Ridiculous that some of these folks are even in the medical field.

Called my PCP's office last night and talked w/ the business manager. They finally agreed to send a referral but openly refused to make it an urgent request, stating that I'd likely not get in to see a rheum until after the holidays. (!!!) I have the option to change my clinic through my insurance and go to a new doctor - there are even some that are closer to me, many of which are DO's. There's another clinic that I can go to as well, a link to their clinic is http://familywellnesscntr.com/medical-providers/index.php . I just want to feel better. I fear that going to a new doctor will mean having to tredge through the hoops ALL over again. :(

Hey Phtartist, could you link that list of tests recommended for Fibro? I seem to have missed it.
664307 tn?1228096767
I'm going through the same thing right now by changing doctors... But here's the thing... This doctor did more for ME in one visit, than both my last doctors did in seven years.  He even gave me free samples to save on a trial prescription!  Although I feel like I have to start over, I'm glad I'm doing it.

I'm finally beginning to learn that you have to "smack" them around a little to get someone to pay attention to your problems.  I still haven't been doing much smacking, but I'm getting realllllllly close...LOL.

Keep us updated with what happens... Best wishes to you.
553995 tn?1332018840
I'm sorry, I one day copied it from the other thread then fogged out on what I was doing.  This starts off discussing Lyme disease because it is directly in reference to a question based on that subject.  To save you effort in the future, directly private message people like myself who can give you quicker answers than looking for the answer yourself.  I am so sorry you had to do that.
On thing you may have enlightened me on is the fact that EBV can reoccur.  I have to ask, were you tested for antibodies or did you have symptoms for a long time?  

Here are all the tests to have to rule out any other possibility of illness -

Lyme disease is very close in nature to the symptoms of Fibromyalgia.  When people say they have been tested for Lyme disease, I cringe because there are many tick born diseases that fall under the catagory that need to be tested for.  Rocky Mt. spotted fever for one. Ehrlichia, Deer tick lyme disease, and others.

plus  Bartonella, B Quintana,and B Henselae commonly known as cat scratch illness should be tested for. Parvo virus, EBV and the Mycoplasmas.

Have a health profile blood test and a chem profile.  This will tell you if you have infection, any organs are malfunctioning or if you are deficient in minerals or vitamins.

Then you have a pretty good idea what is going on inside you, if all this is negative, and you still are experiencing symptoms, you have to look at what may have triggered your symptoms. Sometimes a severe illness such as EBV or the flu can trigger FM. A car accident or an emotional event.

The mycoplasma panel blood test code is (CPT: 87798x3,87581)  This will detect 4 predominant mycoplasmas M fermentans, M.penumoniae, Mhominis, M.penetrans. by PCR. I don't know what PCR is PlateleteGirl gave me the mycoplasma info and is informed greatly about this.
When I had EBV and it was winding down I became sick again with similiar symptoms  but also with hives and my left ear lost its hearing suddenly.  A well renouned ear Dr. did not even test the big lump behind my ear, aspirate it and test its contents NOTHING. My GP tested me for Mycoplasma and came up with M. penumoniae.  We ran antibody tests for about two years and finally I had the antibodies to that.  

Until I had the antibodies to both illnesses, the chronic fatigue I was suffering from did not go away.  Recently I am symptomatic with sore throat, glands swollen, aches, tired, heart beating faster, weak.  So your saying it can reoccur, has me wondering.  

662361 tn?1225334507
Thank you for the list, I will include it with my ongoing list - now 5 pages long - of symptoms, personal and family history, and a request of what to test for.

Funny you should mention hearing loss - I had been complaining about my hearing not being good for years and finally had it tested this year when my family had had enough of repeating themselves and the music or TV had to be turned up loud enough for me to hear but was too loud for everyone else. As it turns out, I have hearing loss in both ears, at nerve level. There is no known reason for this hearing loss so it was assumed that since hearing loss ran in my family that it was hereditary. The doctor handed me a print-out that described "what to do if someone you know is hearing impaired." It was humorous to me because it was the same stuff I'd asked them to do all along - like getting my attention before speaking and not talking from another room! LOL My insurance (state medicaid) refuses to cover a hearing aid (though admittedly we're not even sure if it would help me at this stage) so my family and I continue to 'suffer' with my inability to hear them the first time they speak.

Just an FYI, my brother has also had EBV multiple times (I think he'd mentioned seven known occurrences, all had been diagnosed by doctors.) He's an officer (career earned) in the military and often gets it after a big illness or when stress is extremely high (in the field). We both have issues with our spleen's swelling when suffering from Mono. Both times I've had it I was tested (& confirmed) with a blood sample as well as possessed symptoms. I am not sure when it comes to my eldest brother, and he's in Iraq now so I can't ask him. :(
662361 tn?1225334507

Friday I was able to change clinics through my insurance provider. As of today I have a new clinic, new doctor, and am already scheduled to see a Rheumatologist THIS Coming Wednesday! I pray that this will give me some answers. I've got my extensive list of symptoms & my Fiance will be there with me for support. I think all I need to do on Monday is to get the test results (which tests were done and the specific results) from my old doctors office so that I can bring them with me.

Wish me luck!
553995 tn?1332018840
Hello!  I have a rule for myself, No computer on the weekend. I did come right to this thread to see how you are today.  Had your tests ever shown antibodies for the EBV which should mean your body is immune to it now.  If not it can possibly remain dormant, I'm thinking.  I am so sorry your brother is not only in Iraq but battling with Epstein Barr Virus.  He sincerely should be out of the service on medical leave !!!!!!!  

I am so excited for you to be seeing the Rheumatologist this Wednesday.  He will look for the common tenderpoints that people with Fibromyalgia should have. I'm sure you are familiar with them.  I did not have the collar bone tender points, I remember, but the neck and inside the elbow I had real bad amongst others.  This is something the Rheumatologist checks first off.  Test yourself before you go.  He will tap and press on all the known tender points.

Half way through this message the Dr. called and had a script for me to go for a magnitude of tests including EBV and mycoplasmas.  Plus many of the other tests that I suggested you test for.  This way when my appt. next week comes the results will be in.  I had the full antibodies for both mycoplasma M. pnumonaie and EBV. but we still tested today for them because my symptoms are so familiar. This should be interesting.

Best wishes for a good outcome or some answers Wednesday, let me know what happens.
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