No diagnosis - Firbro?

[Quadmother]

Hi everyone,

I've posted under Neuro but find myself here for reasons I've seen before...I, too, have been through test after test to try to find a diagnosis for a myriad of symptoms...Can you all advise me?

Bottom line - how do you find a doctor who "specializes" in Fribro/CFS?  I've experienced horrible fatigue for years - but docs all said, well - you have a lot of stress in your life (quadruplets, financial woes, crazy schedule, etc)...so just accepted this is the way it has to be.  A year ago, my body crashes - HGB was 7....was hospitalized and given blood transfusions, then iron infusions...GI scopes came up 0 for cause of blood loss.  After many months diagnosed with 2 kinds of Anemia - Pernicious and Iron Deficient.  Given Lupron (6 mos now) to induce menopause 'cause blood loss narrowed down to hemmorachic (sp?) periods.  Fatigue now debilitating...neuro symptoms including tingles/twitches/spasms, slurring, blance problems, etc.  Doc has been wonderful, testing anything we or others can think of - all negative for Thyroid, Addisons, Lyme, Rheumatoid, Sprue, other obscure diseases too numerous to list.  MRI of brain, ultrasound of heart, gallbladder, CV stress test...all negative.  All Neuro tests so far have ruled out MS, dementia, etc.  PT for ataxia seems to be helping some...but still have poor muscle control in legs (take stairs one at a time going down...up is okay).  Neuro did extensive Neuropsych tests, all came back fine.  PT's found ataxia, guarding, decreases motor planning...Neuro says she finds nothing her in office exam...says it's stress.  Argh!  Ruled out psych meds (Desipramine, celexa)...

Approved for disability under "fatigue"...Have been given Ritalin for energy but only benefit is that most days I am awake/alert all day without napping.  Fatigue comes and goes in intensity, but overall awful.  Finally, years ago diagnosed w/osteoarthritis in hip.  Now experience constant pain in hip, knees, right shoulder and occasionally jaw, wrists, knuckes.  Vision seems blurred, even with glasses - tho' usually if I concentrate can focus.

Mom (aged 65) diagnosed with Fibro a couple of years ago after years of being shunted to the side/considered neurotic with psychosomatic symptoms - tho' multi psych professionals wrote testamonials to say she wasn't crazy, depressed, etc., and cause must be physical.

Sooo....anemias are "under control" with treatment, yet symptoms persist...fatigue and now joint pain being the worst of it.  Where do I go from here?  Ready to just give up....really.

[marez]

Hi,
Goodness we have a lot of same symtoms I too have been ruled out on many many things long long story. So Fibro likely but some of your symtons like mine are also a mimic of MS. I had lupus DX to then ruled out after they treated that for years, and lyme ruled out and although my first serious of MRI said maybe maybe not MS they left a question mark. There are many of us over at the MS site with Fibro with or without MS that match your syms. so If you get a chance go to the MS site here and read a bit.

IRON- oh my--I was so low (got FIBRO about 12 years ago) but the iron loss caused my throat to close, me eating ice all night long (pica) and extreme fatigue. I had severe periods and then finial they could not control them so I had a hyst. Since then and several blood transfusions later a lot of the old symts went away until now. That was about 4 years ago. I am not saying run and get a hysterectomy but Iron anemia can cause so many things like my old restless leg syndrome OH my life has improved since my anemia is gone. I just have other problems now.

I don't mean to scare you with the MS comment but so many things mimic each other so add that to your list and come visit us Fibro people there also.
I am now checking both sites until my neuro makes up his mind!
I think so many of us are really in limbo for far too long all I know is we are not crazy we all just have crazy pain, fatigue and bodies that don't play nice!

Hugs
mary

[Gumme]

Maybe some one can help.  I hurt, but it moves.  My knee hurts to touch, a place about the size of a quarter, then it doesn't hurt to touch but to move, then my leg will become so heavy then the real pain moves in, I can't walk, it's like I pulled a muscle or but worst. Then it moves to back or the other side, or just goes away but will show up in the other knee, or shoulder, or foot.  I have not been to the doctor because he is going to think I am crazy "Moving Pain" Yea right.  So far only one place at a time, BUT if this hits in 2 places at one time I won't be able to move.  Am I loosing my mind or can pain just disappoint and then come back in another place.  

[Gumme]

Maybe some one can help.  I hurt, but it moves.  My knee hurts to touch, a place about the size of a quarter, then it doesn't hurt to touch but to move, then my leg will become so heavy then the real pain moves in, I can't walk, it's like I pulled a muscle or but worst. Then it moves to back or the other side, or just goes away but will show up in the other knee, or shoulder, or foot.  I have not been to the doctor because he is going to think I am crazy "Moving Pain" Yea right.  So far only one place at a time, BUT if this hits in 2 places at one time I won't be able to move.  Am I loosing my mind or can pain just disappoint and then come back in another place.  

[Von327]

I noticed most everyone here is from my area I'm close to Memphis as well.  My symptoms started 8 years ago immediately following surgery.  It has been a rollercoaster of worse and better (but never normal).

Immediately I had weight gain (60 lbs or so), loss of appetite, and severe fatigue and other cfs/fib symtoms, but at that time I could still manage college (sometimes partime) and taking care of my daughter.  After my last semester of college started then the fibro pain started in my legs specifically.  I now have constant daily pain in legs, even more weight gain, fatigue. I have tender points as well.  The fatigue seems less manageable since I have to deal with the pain as well.

I'm not a depressed person, rather positive, but when I am at my weakest I get generally moody.  I avoid people (but like people), as most people seem to not be able to comprehend how a normal looking person can be so disabled and I hate having to explain why I need to go home and rest.  Its just embarrassing.  I think I'm beginning to think about the word disabled in more relative terms to myself.

I've had my general doctor try to help me alleviate the symptoms, specifically with seratonin boosters (cymbalta).   I did seem happier, but my weight jumped up quite a bit right off, which made it even harder to get the little bit of physical exercise I can handle.   Also muscle relaxers, but it didn't help either.  I'd  I'm now reading up on and exploring other options. Like many of you I'm in need of a good doctor.

As far as diet goes, mine is fairly airtight.  Mostly fruits, veggies, lean meat, some minimal complex carbs (as carbs don't seem to agree with me much).  No sugars, unhealthy foods.  Taking vitamins.  Can usually exercise at least once a day.  My weight, fatigue, and lack of balance seems to hold me back alot.  I try to do things reasonably without over doing it.   I figure at age 27, I should be able to manage much better than I do.  It's a frightening thought to me.

Thought I'd share what I can, I know every little bit of information from others helps me along.  TN people can contact me by my art site, lavoniamartin.com.  Just see contact information to get my email and let me know you have fibro as well.  

Cheers, Von

[Curls]

1. Answer questions throughly and don't get thrown by the lack of space by some of them.  2. Repeat every limit over and over where ever it applies to a quesiton.  3. Really think about your limits.  The question isn't "can you do this task".  The question is "can you do this task anytime and without limits."  It's very tempting to answer more positively than you can really function.  So, for instance, for how often can you drive - clarify things like - only on a good day, with assistance of cruise control, only on local/highway roads, only to one store and then need a rest...  4. Make sure to describe your activities before getting sick throughly and add every little thing.  I've seen "had to stop (a particular) volunteer activity" listed on a review as prime item to catch the reviewers attention.

An easy wording format for the essays is "I experience x (symptom), and therefore can not do y (task)."  Particularly for the work exercise make sure to list work related tasks and don't assume they can figure out that if you can't brush your teeth, you can't grab a folder file.  

Get your tests lined up and submit them yourself.  They won't be able to find them, even when they are attached to the application, so be prepared to send them in again.  List them and your doctors under the question for that.

It is possible to get approved on the first pass if you do a good job, (and have some luck on the reviewer).  A lot of people handle this as a quick, fill in the blank, form, and it goes better if you take time to think it through.  If you can get an attorney to proof your submission that's helpful at avoiding saying something that will be less than ideal to work with at later appeal stages.  The intake person will pressure you to get it done quickly, but you're in charge.

Be very polite and professional with the reviewers.  They get yelled at a lot and appreciate being treated like people.

The process is uncomfortable and scary.  However, thinking about it also helps you get control over your experience of your illness, find words to express your symptoms, which can help in everyday life.  

Good luck!!  

[phonelady]

I just found this site and actually began to cry, seeing the information regarding Doctors in the Memphis area.  I had to travel 92 miles to a physcian in MS to get my diagnosis of Epstein-Barr Virus/CFS.  I am also diabetic, with high blood pressure.  I have an appointment this Tuesday with the Social Service office to file for disability.  I haven't worked full time for 16 months.  I would like to hear from anyone that has any pointers on their SS experiences, especially the positive ones.    

[shan1078]

I too have fibromyalgia and CFS.  It sound like you have a wonderful, caring doctor.  Can you please tell me his name and or information.  It's been a struggle for me to get any good treatment, and to be prescribed any medication that actually works.  I am in pain everyday.  And the Hydrocodone that I have been prescribe dosent' work anymore.  I got excited when I read your post, I wish I could find a doctor that actually listens to me.

[dsignrmom]

I live in Memphis and am  a patient of Dr Merigian and can say that if you follow his initial plan, it works.  I have gone off the diet he prescribes in the beginning and can see, to my detriment, just how much it truly does work. I was feeling energetic and focussed and then I got cocky and started eating sugars again.
After recent family events, and a recurance of a systemic yeast infection, have caused three weeks of FMS misery I'm going back on the diet and supplements.
A note - Dr Merigian is not cheap and most insurance doesn't pay. We have Blue Cross Blue Shield of TN and they laugh at the idea of holistic treatments. But Dr M is worth the money if you can make it happen.  He has patients who come from long distances to see him and, to me, that's a strong testament.

[patsy10]

From all the research I've done, in my opinion, if your lyme test was sent to Quest you will probably get a negative even if you have it.  There are other labs who have much more sensitive testing like Igenex, Stonybrook, MDL.  I would ask your doctor to send it to one of these.

[Bubblestn]

I also have fibromyalgia, have been diagnosed about 3 years ago, also CFS.  I have been having problems with some discs in my back, causing pain down my leg and my finger tips to go numb.  I live in Nashville, TN, my regular dr has me on durgestic 100 mg and ultram 50 mg. for pain and adderall 20 mg for CFS.  There are times that I hurt through this, and I also thing that when you sweat alot the medication comes out of the patches faster, I could be wrong.  Any way my dr wants me to go to a pain clinic, he said I would get better help there.  I am not knowledgeable in this area, does any know of a place that is nice to their patients and not treat them like dogs.

[robinbray]

I re-read some of the posts regarding fibromyalgia this morning and noticed that anemia and blood cell counts were mentioned.  In my family's dealings with this disease, it has come to light that a fungal infection in the intestinal tract can cause nutrient absorption issues.  This includes minerals like iron, copper, magnesium, etc. as well as vitamins.  If your body cannot absorb these vital substances, it cannot carry on all the processes that these elements are part of.  For example some of the yeasts / molds will rob a person's body of its iron and create anemia.  A shortage of magnesium can cause heart problems.  A shortage of an amino acid called 5-HTP can cause depression, anxiety, and sleeplessness.  If you become deprived of tyrosine, you can get a tremor that may be associated with some form of disease like Parkinson's.  We have found that most "regular" doctors either don't believe this or have not been adequately trained in this area.  Only the doctor's trained in integrated or environmental medicine seem to take it seriously.  The integrated doctor I am currently seeing is trained in internal medicine but also has training in looking into aspects of nutrition and other holistic science.  He is a strong believer in traditional medicine but looks at alternatives as well.  I hope all of you will take this to heart and find a doctor who can help you.  

[robinbray]

Dear Ms. Willif.  I posted a similar comment to Quadmother last night but it occurred to me that you might not read the post and thought you might benefit from some of my family's experiences.  My mother has suffered for years with fibromyalgia.  Quite by accident, we discovered that the attacks are definitely linked to chemical exposure, particularly with household bleach such as Clorox.  Within 1 to 24 hours, she is bedridden.  She can take a prescription drug, phenergan, and gets well fairly quickly.  The drug is an anti-nausea medication that is also an antihistamine.  Also, my sister in SC became very ill due to chemical exposure to a wide array of stuff including perfumes, candles, and a lot more.  She could not even go to church where folks were wearing perfumes or she would end up in bed with bronchitis.  Before she met her new doctor, she had also been diagnosed with fibromyalgia.  Her immune system was under attack, as it turned out by a mold infection in her sinuses and gut. She now sees an integrative medicine docro and has gotten a lot better.  The pain has disappeared and she has been able to go out in public more.  As to my situation, I live in Memphis and traveled to Nashville yesterday to see a holistic doctor there with a problem I have suffered with for 5 years.  He thinks I have a systemic fungal infection and has started a series of tests and medications.  No one in Memphis could figure anything out and several doctors were simply dismissive.  The practice in Nashville is Nashville Integrated Medicine.  Dr. Forbes gave me the name of a doctor in Memphis but it looks like she is a dermatologist.  Her name is Jennifer Childers on Union Ave. near UT.  I will give her a call because I need to get blood drawn frequently to be sure the drugs are not causing liver damage.  There is also a doctor who specializes in fibromyalgia and underlying causes in Cordova, TN.  His name is Dr. Kevin Merigian and his telephone number is 757-4646.  At any rate, I hope this information is helpful and best of luck!

To:

[robinbray]

Dear Quadmother, I hope you are feeling well this evening and if you have found a holistic physician here in Memphis, I would like to know.  My mother has suffered for years with fibromyalgia.  Quite by accident, we discovered that the attacks are definitely linked to chemical exposure, particularly with household bleach such as Clorox.  Within 1 to 24 hours, she is bedridden.  She can take a prescription drug, phenergan, and gets well fairly quickly.  The drug is an anti-nausea medication that is also an antihistamine.  Also, my sister in SC became very ill due to chemical exposure to a wide array of stuff including perfumes, candles, and a lot more.  She could not even go to church where folks were wearing perfumes or she would end up in bed with bronchitis.  It was attacking her immune system.  Coincidentally, she sees an integrative medicine doc and has gotten a lot better.  Seems the chemical thing is related also to fungal infection.  I live in Memphis and traveled to Nashville yesterday to see a holistic doctor there with a problem I have suffered with for 5 years.  He thinks I have a systemic fungal infection and has started a series of tests and medications.  No one in Memphis could figure anything out and several doctors were simply dismissive.  The practice in Nashville is Nashville Integrated Medicine.  Dr. Forbes gave me the name of a doctor in Memphis but it looks like she is a dermatologist.  Her name is Jennifer Childers on Union Ave. near UT.  I will give her a call because I need to get blood drawn frequently to be sure the drugs are not causing liver damage.  At any rate, I hope this information is helpful and best of luck!

[EmilyWillif]

Hi all,  I was just on line looking for a rheumatologist to help me with my constant muscle pain/fibro.  I also live in Memphis and was diagnosed in April.  First I had interstitial cystitis (painful bladder) and now fibro added to that.  I am looking for a doctor who won't be afraid to write me a Rx for pain medicine so I don't have to live in misery all the time.  Anybody got any suggests for a me?

Thanks, Emily

[Quadmother]

Hi all,  Thanks for your responses and support!  Just wanted to give a little update....Saw my PCP last week and felt a bit better/less depressed after seeing him.  Asked him about Fibro and CFS as possiblities.  His take on it was, "well, if you weren't so ill I might look in that direction..."  If, he said, I didn't have the 2 forms of anemia, and hemmoraghic (sp?) periods, and B12 deficiency/low b12 and sleep apnea and neuro issues...THEN he might look for CFS or Fibro to explain symptoms.  But he thinks I have many different problems that don't fall under one specific diagnosis.  He drew for Lyme again...as well as for some other tick born viruses that are common to the northeast.  So we'll see about that.  He also ordered X-rays to take a look at the painful joints to get an idea of whether it's osteo arthritis or what...

When I went to Quest to have my labs drawn the RN there said she sees my PCP, too.  This RN has Lyme and told me our Doc is actually writing a book on Lyme (who knew)...in any case, she said, he is very thorough and thinks outside of the box (which has been my experience, too)...

Regarding the neurologist - I mentioned to you all that at our last visit she said the problem was "not organic"...My doc said - how can she say it's not organic just because she hasn't figured out what it is, yet?  Anyway, I felt like a faker or some kind of weirdo and stopped using my cane (which the PT had given me after I had a fall in Feburary and I've been off balance (physically...) for awhile) 'cause it make me feel like a hypochondriac.  Well, I fell off my porch yesterday.  Just, you know, took a step down (holding the railing) and landed on the pavement.  Guess  I'll use the cane and find a new Neurologist!!

Again, I thank you all for your support, as I said, and will continue to look toward finding a way to get better!

[bev62]

Thank you Big Orange.  I love Pigeon Forge, we live about 45 minutes from there.  Great place to shop.  

[big orange fayray]

Hi Bev62, I no exactly where u r. We go to Pigein Forge about 3 times a year. I am sorry u r having such a hard time. It doesn't sound like fibro 2 me. They say u r suppose 2 have 11 of the trigger points. U only mention your shoulder and neck area. My problem is in the low back. Not familiar w/neck. I wish u well and luck w/children.
Soft hugs and Prayers,
Big Orange Fayray  

[bev62]

Hello my Tn friends.  I am also from Tn, I live in Morristown.  It about 45 miles east of Knoxville.  My nerosurgeon is in Knoxville.  I really don't know what is going on with me.  I had a two level cervical disk fusion in Nov 2006. I had herniated disks C5-C7. Since my surgery I am in more pain, but all my test are good. I had a myelogram done this past week and the results show that there is not yet bony incorporation of the fusion blocks, there is slight grade 1 anterolisthesis of C4 upon C5 by approximately 2mm. There are anterior and posterior osteophytes at C5-C6 and C6-C7. Some mild foraminal narrowing bilaterally, left greater than right, at C4-5 related to Luschka joint hypertrophy. The doctor said that I had a bulging disk at C4-5, but he didn't fuse it because he didn't think that it was that bad and he didn't like to do more than a two level fusion. I have constant pain in my right shoulder and arm, my neck aches and I have a headache all the time. What do the test results mean? Would this cause the symptoms that I am having? I also had a nerve conduction test today and everything was normal. What can be causing all my pain? I can't live on pain pills the rest of my life. I have two small children ages 6 and 4. I am bearly able to care for them.  This may have nothing to do with Fibromyalgia, I really don't know.  Does anyone have any ideas?

[marstreis]

Here is a lot of good info on Fibro and natural ways to treat your symptoms:
"Fibromyalgia is a syndrome characterized by severe muscle pain, tender body points, disturbed sleep, depression, fatigue, and anxiety. It is often difficult to diagnose, because symptoms can vary in severity and mimic other chronic conditions such as Chronic Fatigue Syndrome and Lupus. Approximately 3.7 million Americans suffer from fibromyalgia to some degree, and about 90% of the cases occur in women."
http://www.jigsawhealth.com/articles/fibromyalgia.html

[big orange fayray]

Jenn, I am sorry 2 hear that u & ur mother both have this "terrible" illness. It seems to me that if Drs. had recognized this years ago instead of telling all of us we were "faking" all of our symptoms maybe more could be done now so we could have a life. To make matters worse, those of us who have worked all of our lives to have the American Dream & have it jerked out from under us & denying our disability. we r ready 2 lose everything we own because I'm not able to work because of this illness". I pray that the study you r n will benefit ALL that suffer from fibro. Sorry to vent!!!
Soft hugs & Prayers,
Big Orange Fayray

[jenn38018]

I certainly understand the frustration of not being able to work and losing a great salary that you worked so hard for.  If you have been denied disability, don't give up!  My mother is on disability for her fibromyalgia.  It takes persistance to get approved.  Most people get denied the first time because they want to see how serious you are about it.  You must appeal.  You also must take it upon yourself to keep great records and documentation.  Record in a log book every symptom, when it happens, what it feels like, and how it is limiting your day to day life.  Also log every doctors appointment you have and get copies of all of those medical records.  If you have to go to the psychiatrist for depression, write it down and get records (this can show disability too).  Also, when it comes time to appeal your case, go in person to meet with your caseworker and bring someone with you that can attest to how this disease is effecting your life.  This is how my mother was approved.  Her caseworker said you would be surprised how many people don't do this.  She said just meeting my mother and listening to my sister's testimony made all of the difference in the world in approving my mother.  Most people do end up having to get a disability attorney.  That is ok too.  They will just get a percentage of the retro pay that you get once you win the case.  The retro pay is disability money that you are owed from the time that you first became disabled until the time you were actually approved.  Think of it this way, you wouldn't have gotten that money anyway if you didn't get any attorney, so what do you have to lose?  I myself have decided to go back to school.  I am studying to be a nurse.  My hope is that in a few years they will have some better medications out there that can control the symptoms to the point that I can work.  At that point I will have a degree and be doing what I have always wanted to do, but never had the time to because I was always having to work a full time job to make ends meet.  Either way, you need to know that there are options out there for you.  Since you live in TN, I would be more than happy to help you any way I can.  Just let me know.  Good luck to you!

[jenn38018]

Yes, I live in Memphis, TN.  UT has a campus here and they also have merged with Methodist healthcare here, so all they have a great teaching hospital downtown.  My rheumatologist's office is attached to that hospital, and he does clinical research for UT Methodist when he is not in the clinic.  For this reason he is hard to get into see because he is only in the clinic maybe one or two days a week.  He took me on quickly because my mother was already a patient of his, and he was very interested in treating a mother/daughter pair with fibro since they are still researching whether genetics plays a large role in this disorder.  His name is Dr. Benjamin Wang.  Let me know if you have any other questions.

[big orange fayray]

Jenn, you mentioned seeing a doc @ Tn. Univ. R U from Tenn? UI live between Nashville & Chattanooga. If u r please let me know.
Big Orange Fayray

[jenn38018]

Hello.  I have had fibromyalgia for about 8 years now that I know of, and I can definitely empathize!  I went through many doctors and many incorrect diagnosis before finding the right doc.  The best thing to do is what you are doing now, ask around.  That is how I found out about my doc.  I see a Rheumatologist who specializes in fibromyalgia research.  He is with the University of Tennessee Medical Group of Doctors.  It would probably be good for you to do some searching for a research/teaching facility such as this and check out their rhuematology department.  You can usually view all of the available docs online with their credentials and what their special interests are.  If you come across one who lists fibromyalgia or CFS as their interests you are in great luck.  These are the doctors who will really understand you and your symptoms.  They also know all about the latest research being done and new therapies that are not yet approved or are about to be approved.  This is important as new information is being learned everyday about these disorders, and if you don't keep up you will be left in the dust.  Don't make the mistake of going to an elderly doctor who is very set in his ways.  He/She will probably treat you like you are crazy or depressed.  Also, if you find the right doc, they may be able to refer you to clinical trials being done in your area or other specialists that can help you in other ways.  Since fibro and CFS do effect so many different systems of the body, it is not uncommon to see several doctors for just that one disorder.  My doctor is referring me to a psychiatrist who has a special interest in fibromyalgia patients (especially how the neuroreceptors are being effected) and an internist who has a special interest in fibro patients (especially how to control the pain associated with this disorder).  I am also going to see a neurologist because I am having new symptoms that are indicative of MS.  The weird thing is I checked the website for the neuro clinic I am going to, and they have fibro listed as a neurological disorder.  The more research is being done, the more they are seeing that it effects you neurologically in many ways not known before.  It could be that after all the testing they tell me it is just my fibro manifesting itself in a different way, but it is better to be safe than sorry.  My doc told me it is not uncommon to have a whole myriad of tests in your record as a fibro patient, because you just don't know what symptoms are fibro and which ones are some other underlying problem.  Also, you may want to see a nutritionist.  They can help create a diet for you that will help to keep your fibro or CFS in check.  Certain foods can do certain things for your body (ex:salmon is great for cutting down on joint pain).  Sorry I am being so long winded, but I hope this info helps you.