Refusal to Diagnose Fibromyalgia & Chronic Fatigue Syndrome

My psychiatrist attributes my crushing fatigue, post exertional malaise, headaches, low grade sore throat, tender glands, sore joints and muscles to depression. Yup, I am depressed, but got depressed after I got “the flu” and never got better. It is like I told her about the struggles I have faced in my life and she immediately jumped to the conclusion that I have to have “major depressive disorder”. I mean, I am not too happy because I can’t work, can’t do all I used to do, but my symptoms are CLASSIC ME/CFS and I find it terribly frustrating. People who are depressed don’t want to do anything – I want to do everything, but run out of gas almost as soon as I start, or, I press on and pay for it with a few days in bed. I would get angry about this, if I wasn’t practicing being cool and easy going !

May I suggest you leave the psychiatrist, unless you are taking medications that he prescibes. 24 years ago I also caught a ‘virus’ which never left. Since I was in a community that knew me well (I was a yoga instructor) one of the first contacts I made was with a psychiatrist friend and I’ll never forget what he said to me…”Diane, there are so many illnesses that Doctors don’t know about and I get many patients like yourself, you are not clinically depressed”

I have learned to live with Fibromyalgia and CFIDS…I am now homebound. I focus on one day at a time and whatever the day presents I deal with it….do I like it? NO. But I refuse to let the illness destroy my life.

For a long time, it was suggested and even diagnosed that I had “Depression.” Finally, a mental health professional asked me if it were possible that I could have CFS. I have many of the classical signs/symptoms of CFS. If has also been suggested that I could have fibro. But, I do not have pain points. The problem that I have encountered with getting an actual diagnosis is the the practitioners in my area can’t agree with what fibro/cfs is. Many do not even want to investigate further. I suspect that I do have a neurological component with fibro; but, when so many practitioners insist that depression causes fibro, or they insist that fibro is an arthritis like disorder, it’s no wonder that they are reluctant to give such a diagnosis.

Missy D I’d also like to recommend that you leave that psychiatrist and find one that is qualified as quickly as possible. You deserve nothing less. I had several of these and their dismissals and incompetence do more harm that you realize at the time.

My GP was reluctant to make the diagnosis but instead of labeling me with a BS diagnosis sent me to the infectious diseases specialist at the hospital who was great. He simply got me to recite my symptoms and reviewed the test results from my GP. Then he said that it sounded like ME and to look on the Internet and if it sounded correct that that was probably right. He didn’t even make me have any other tests which was a releif. I was almost exactly six months out from the start of symptoms at that point.

But I have had some of my ‘friends’ assume that it’s depression. And my current GP always asks me if I’ve been feeling depressed. It really pisses me off and I would love to find a new GP who would actually support me in trying different treatments.

I must be one of the unique individuals that actually got a diagnosis once I became aware of FMS. I had been varying degrees of miserable for a few years, mostly blamed my liver (it isn’t diseased, but it “acts out” -enzymes go out of kilter, pain, extreme fatigue- when I eat poorly or am stressed). 13 years ago, I was having my hair colored and was reading one of the Ladies magazine, and the Disease of the Month was Fibro. I read the first persons story, thinking how awful, same with the second one, but the third one had me thinking “oh shit” repeatedly, it was my story. I took the info to my primary care doc and she referred me to the Rheumotology clinic at Cleveland Clinics. I saw Dr Long, who happened to be both a Rheumetologist and pharmacist. The list of tests he did to rule out other diseases was intimidating,. He told me from the beginning that he t hough it was Fibro, I passed the tender point tests 18/18 plus some that don’t count. It has been 12 years since I got the official result letter, and generally have had good treatment protocols since. I have found that being confident in my diagnosis has helped when I have gone to new doctors. I know how the primary care doctors overly focus on depression, they do that even when you have a FMS diagnosis, and my personal opinion is they are trained by the drug reps to push antidepressants, the new $$ ones, Now if you have been living with FMS for a few years, depression is not uncommon, but it doesn’t mean it is the primary condition.As far as dealing with the docs, remember to study this illness, know the systems it effects and how it act in you. If you know this, even if you don’t have a letter of diagnosis, you can feel confident when asking for care. Docs seem to forget that they work for us, and aren’t holy men dispensing blessings of relief.

Hi Missy D, I do not think a psychiatrist would consider diagnosing FM as he is certainly going to know even less about it than a GP would, but FM has many symptoms that do come with depression so that would be his first call anyway. I am not sure of the rules in the US but in Australia only a rheumatologist can diagnose FM and then often doesnt even know a lot about it, but by the time you get to see one, the GP has done all the other testing for many other diseases/disorders and ruled the possibility of anything else out. Many other things with a lot of similar symptoms can be more urgent to test for in regards to life threatening or requiring immediate treatment for your body such as MS etc. A doctor is only doing his job testing for everything else first that he can test, even if privately he may consider it is FM. Also, there may be times when something that can be tested for is a better outcome and much more easily dealt with than FM and they would certainly like it to be one of those. My GP who I was seeing when I presented with symptoms was doing the battery of tests when I said I thought I had FM, besides being not too knowledgeable on FM and the fact that I am in a small town and my GP and I were on friendly almost sociable terms, he slipped when I said it and said “I hope not”. He was surprised and disappointed for me when my diagnosis came back. I had to switch GP’s when his contract locally finished and my new GP has a lot more knowledge on FM and discusses things with me re medication change possibilities and supplements etc, he does occasionally discard something I tell him as it is not scientifically proven or recorded and says I read too much. He is learning though. It was eventually when I got to see a Pain clinic recently that I felt like I was completely listened to and it was acknowledged that I have all the particular problems I say I have. I have fibrofog 100% of the time ( I believe from my research that is due to the fact I have

I was suffering for months. I was told I was depressed and should go on an antidepressant. I told them that I was getting depressed over the iinability of all of the doctors and specialists that I had seen to determine what it wrong. Went to an accupuncuturist who is also a trama surgeon and she told me that I have Hashimoto and Firbromayalgia. From months of going with no diagnosis, I was almost in Adrenal failure. That was almost four years ago. I go to her for everything and try to stay away from all the doctors and specialist who dismissed me.

As I have found to my cost, in the UK, all disease are all in the mind until proven otherwise, and until the truth is revealed, you will only receive psychiatric intervention based upon assumptions. The same happened with Asthma, Parkinson’s disease and Multiple Sclerosis, they were all psychiatric problems until the truth was revealed. ME/CFS is going through the same process, where even though it is starting to look as if true ME/CFS is caused by chronic infection of neurons with HHV-6, not detectable by blood tests but can be found using a sample of cerebrospinal fluid, psychiatrists will maintain their erroneous dominance. Why? Simple, antidepressants are nice and cheap.

Leonard Jason, a psychology professor who has CFS, says the way to tell the difference is to ask the person: “What would you do if you were well tomorrow?”

The person who is depressed will say “I don’t know” or something similar.

The person with CFS will have a list.

Before diagnosis in 1997, I mentioned CFS to my docor’s substitute who reviewed a negative CT scan of my sinuses he’d ordered. His response, Chronic Fatigue Syndrome? You don’t want that! There’s no cure for that!

I see a psychiatrist because I take 4 meds that the GP won’t prescribe because I’m too complicated! Zoloft for depression, Clonazepam for stress, Trazadone for sleep, and Adderall for the fibro-fog. Only Zoloft is taken routinely and, as an RN, I’m aware of what triggers my need for the others. The doc gives me Adderall for “ADD” so FM isn’t even one of my diagnoses according to him. But I was diagnosed with FM in 1983 and didn’t even know what FM was until I got the internet. That doc was great and would give me PRN narcotics when things got bad. Since moving to Florida getting pain relief has been nearly impossible. I haven’t bothered seeing my Florida GP for a year and a half because it would do no good.
Though I know I have depression, I agree with Missy about the strong urge to do something!! I’ll sit outside and make big plans to work in the yard …… then I find I’ve been just sitting for 3 hours and have done nothing. It’s very hard not to kick myself for being “lazy”! The Adderall helps me focus but it doesn’t give me an energy boost nor have I lost any weight like most folks do.
I believe I have CF also. A friend was recently diagnosed with CF after a virus that she couldn’t seem to shake. She’s been to many specialists and is trying alternative therapies. Me, I don’t want to burden my family with medical bills (our deductible is $5000!) I have trouble making and keeping appointments. Seems way too hard to get in the car anymore. After 29 years of FM I feel like I’m just taking up space and resources on this planet.
If I could only get relief from the constant pain life might seem a bit more bright.

Oh Missy you sound just like me. I know your frustration, and what you describe are classic symptoms. Definitely find a good GP, that is the only way you will get the support you need medically. I too am depressed, but I am depressed that I have had to go from being an athlete to someone who has trouble keeping the feeling in her legs if standing in the one place for more than 10 minutes. Give that to those doctors and see how happy they are with their life! I’ve met some complete jerks in the medical field. I was having a conversation with a someone who was a medical specialist and when I said I had FM he laughed hysterically as though I’d said something ridiculous like “You can get pregnant from a toilet seat.” He said it didn’t exist and there was no way to diagnose it. I looked him firmly in the eye and told him there was a legit way to test. More hysterical laughing as he sarcastically asked me as though I was retarded which specialist does it. I told him a Rheumatologist does and stared him down. For as horrible as that ‘specialist’ was my 2 GP’s are compassionate and professional. Please keep looking, I know it’s so frustrating but when I found doctors who would believe me and take time to get to know me as more than more money coming throught the door, it was such a relief and I felt like the Himalayas had been lifted from my shoulders.

It seems to me every time a woman goes to the doc for anything that an antibiotic won’t fix they decide that she is depressed. Give them a pill and send them on their way. Then you don’t have to sepdn much time on them. Big pharma makes big bucks off all those antidepressants. Many people like me don’t tolerate anythign SSRI related. Serotonin toxicity can kill you.

So, I have had to give up and just live with it and try to manage my FM myself. Losing weight and doing yoga have helped quite a bit but mostly for the other kinds of pain like arthritis that can keep FM flared.

After years of searching for what was making me so achy, exhausted and mentally fogged, I finally found a doctor who believed me. She gave me the tender point test and said “congratulations, you have fibro.” However, she had a policy of not documenting diagnoses so I had nothing to fall back on! When it got so bad I nearly had to drop out of school I managed to find a doctor at the university who was willing to write me a letter. I never was given the “oh, you’re just depressed” diagnosis but I sure get lots of “but you don’t look sick” from coworkers, etc.

This is one of the reasons I’m so pleased with my rheumatologist. She did tons of tests to rule out all sorts of things, poked and proded and checked all my tender points. And then she asked me, “What do you think is wrong?” I told her I wasn’t certain of a name, but here is what my body is telling me. She listened. We talked about diagnoses and options for treatment and came to an agreement about how we wanted to proceed. We were a team and she recognized that while she may be the doctor, I was the expert on me.

Here’s a good article to share with your conventional doc about fibromyalgia: http://www.womentowomen.com/fatigueandstress/fibromyalgia.aspx I think he took me somewhat more seriously after reading this. Still, seeing a naturopath was the only way to truly get help. Love my ND, but ugh! No insurance.

I started having symptoms of Fibro 38 years ago when I was 17 years old. Of course no one had even come up with the name Fibromyalgia back then. My mom made me go to a doctor. He examined me and then looked at me with disdain and said, “There’s nothing wrong with you. You are just trying to get attention.” I was stunned. Of course I left and vowed never to return to a doctor for the rest of my life. Looking back I see that as a blessing because I searched for help through natural and alternative methods. I have experimented with many different things. I tend to be very scientific about it. I’m sure many of you have done the same. I have found a few things that reduce my pain and allow me to live a pretty normal life. I have avoided all the drugs that doctors throw at us these days because I don’t go to traditional medical doctors for help. As a result I have not added the side effects of those drugs to the many difficult symptoms I deal with from the Fibro.
I have about 5 basic principles, but the most important one is that I never eat sugar. It causes me severe pain within a few hours, sometimes it takes a day or two. I have tested this over and over because it is pretty hard to avoid sugar completely, but it really makes a HUGE difference. Give it a try, but be very strict. I don’t even eat fruit.

To Claire – exactly!! A very simple distinction.
My CFS specialist always checks for depression when he sees me. My response is that CFS is depressing; all the things I want to do and can’t are depressing; but I do not have depression.
Of course, many people with CFS and/or Fibro do have depression in response to illness, pain and enforced life changes and I certainly have days when I feel depressed.

I am very fortunate to have a specialist who is involved in CFS research and absolutely recognises it as a specific but poorly understood medical condition.

The doctors I dealt with most certainly would not consider Chronic Fatigue Syndrome and Fribromyalgia. I was experiencing health problems for many years. For 15 years there was no denying something was wrong. However, I managed to work the first 5 years of this 15 year stretch barely able to cope. There were severe colds and flu including a whole lot of blood in my urine along with other symptoms that weren’t making sense. Still no diagnosis. Apparently, I was under a great deal of stress and depressed. Along came more illness as before, infections, allergies, flu and severe colds. This time it wasn’t only depression but Obsessive Compulsive Disorder. Despite the fact I was educated in psychology and social work and rather aware, no one was listening to me. The monkey wrench in the whole situation was that in between this all my brother died rather tragically. Despite the fact I went through the grieving process healed etc and functioned much much better off of anti-depressants, I was still labeled as depressed and with the added of Obsessive Compulsive, This whole situation being rather ironic considering the anti-depressants made me severely depressed and created severe seizures. Of course no one wanting to step up to the plate and say let’s re-examine things. Not to mention there was no way any of them were about to admit they made a mistake. So in a small town and region with professionals all tied together and only one clinic in this small town, the nightmare perpetuated for over a decade. Finally being re-diagnosed and having a specialist recommend additional help the clinic still won’t budge and refer me to a pain clinic. Despite the specialist suggestion I had to see my then gp 3 times and emphasize the issue. The irony of the situation, or should I say tragedy, is that I, according to one doctor, probably had this illness since I was 7 years old. At this point, because of lack of treatment, my situation is extensive and quite severe.

Now I’m currently diagnosed with extensive Chronic Myofascial Pain, Chronic Fatigue and Fibromyalgia. Yes, I believe all three to be separate illnesses at this point in time. I’ve simply stated generalities here and left out a lot of specifics in an effort to be gentele. My story is rather horrific. The real tragedy is that I’m not the only one with such a horrific story.

I was recently sent to a neurologist for a second opinion. I am 5 years post rear end MVA, and the pain in my neck, left shoulder and upper back has never gone away. He told me that I don’t meet the criteria for fibro, even though every symptom I listed on the intake form meets the criteria. He said that most fibro diagnosis, is in fact NOT fibro, but what the hell else could it be?

Yesterday I went on a date with my wife. I took pain meds the day before so that I would have a bit of relief and be able to sleep. Otherwise, the pain keeps waking me up and I would have been a grump. We enjoyed the show, however it was very difficult for me to sit in that chair for two hours. I constantly had to move, even stand up during the show (I was in balcony box so my standing did not impede others). Today my pain was so intense that as soon as I got home I hit the bed and slept for four hours. My wife had to wake me up. I sleep or try to sleep because it is my only time whereas I do not deal with pain. Now you would think that doctor’s would work very hard to find a cure or find some way to help those who suffer but instead they go with the, “it’s all in your mind” crap. I am a peaceful soul but the combination of my daily pain and arrogent doctor’s has left me with a righteous anger. I know that I suffer, my family knows I suffer and other fibro folk know I suffer but the doctor’s have no clue.

Even with a medical diagnosis based upon a virus that never left my body; even with that evidence from the FIBROMYALGIA AND FATIGUE CENTER I still deal with doctors who want to send me to a psychologist as if this pain is all in my head. I have never wished my pain upon another but truly I wish I had the power to transfer a portion of what I feel into these doctors. I’ ve lived with pain for so long that I can take a ton of it, so I know that if I substituted my pain to another (in theory), that person would drop like a brick. Of course in humor that might be the only way for a doctor to work hard to find a way to help those who suffer…meaning that I doubt there will ever be a cure or a doctor willing to look beyond the box (so to speak) to help those who suffer.

The last doctor from whom I sought help would not even write a script for me to get handicapped access. The doctor before that insisted that I get more X-rays and then seeing no problem, told me there was nothing he could do except refer me to a psychologist. The doctor before that stuck a very long needle next to my spine, and since the numbing agent did not work I felt everthing. The needle only created more pain. Even the dentist who told me that he never had to use more than three shots of novicane to numb a patient, recanted after having to use 7 shots whereas the last shot went directy into the nerve. Only then was I numb enough not to feel anything. Now I am seeing one last pain specialist. I do not know what he can do that the others have not already tried. Pain meds like Oxy, Hydrocodone, and Perc barely reach the pain and the side effects are worse…extreme itching! Morphene does not even effect me. The only thing that has ever helped me with pain was liquid Ibruprohen and that was given to me after 8 hours of kidney stone torture.

But still my wife wants her husband back, and I do not blame her. With the way I am going I will have to stop working soon. As I type this there is not one muscle that does not ache. My hands have swollen up a bit while I type out this message. There is only so much pain a person can take and I am at my limit. Thankfully my faith helps me to hand over my suffering and prayer and study of God’s Word remind me that this suffering will one day pass.

I used to be very active and enjoyed a good game of baseball or basketball. I enjoyed riding my bike and walking with my wife and family. I worked hard to fix up an old house and had energy to do my job well. Now, I am unable to do any of those things. Even shopping wears me out. I still WANT to do those things but I am just unable. I studied depression long enough to know that the desire to “do” is impeded. That has never been the case with me. In fact I never sit and mope about my condition, with a “woe is me” attitude. Instead I rant (like I am doing now) and I cling to the saying, “do not go gently into that good night, rage rage agaisnt the dying of the light”.

I encourage my friends who also suffer not to give up, there has to be someone out there who can help us. Even though there is no cure for what we deal with, there should at least be something to help moderate the pain…something other than a drug that puts you on the shelf. Therefore I pray that Doctor’s will open their minds to exploring answers beyond simple diagnosis that we need psychologists. At least I have evidence…I have a virus in me (Epsteen Bar) that is off the charts. It has killed others with smaller doses that what is presently within me. I have read others gained Fibro from viruses that have never left their system and in fact have grown since the innitial day of illness. For me the virus that caused Mono has been inside me and growing since 1988. At least this is measurable to those who demand “proof”.

I am an ordained pastor. To earn this title I had to earn a Master’s Degree. Now I am relegated to working part time and I can barely manage. So as a pastor, with the above things shared I hold onto this: 2 Corinthians 4:16-18 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. ”

Blessings to all who suffer…YOU ARE NOT ALONE!

You can find me on Facebook as Doug W. Koehler…if you ever need to chat I am here.

wow I have been reading your posts and I see myself in almost all your stories. I was told I had fibro, when I was 25 and I am 44 now. But after serval mri, they found damage to my spine, disc disease, herniated discs, and degenerated disc disease, and spinal stannous, and so on…. My docteur is good about pain meds but I have been taking them for years, I want surgery but no docteur will touch me, they all say the same thing it will only remove the pain down your arm but will not fix the rest. I feel like if only someone would try I sure they could impact my pain. But they don,t seem to care, no one cares that you are in pain 24 hours a day. I work still because I need to live, but it is difficult, I try not to miss, but i do, and now my meds don,t work as well, and i have to take so much, I sometimes fall asleep at my desk because of the brain fog because of the morphine. In canada health care is free, but it is difficult to get a docteur to take a chance on a difficult case, I often wonder if i was paying if a docteur would risk doing something for me. I feel for all of you I know what it is like to suffer everyday but having no visable signs, people don,t get it. when even sleep does not help and you feel like there is nothing left….the morning comes and we fight for one more day. keep fighting, one day someone will find a way to help us. things I do which help a little, back and neck brace, keeping a pain diary taking meds, why suffer if you don,t have too, hot baths, and heating pads. I resently got a tens machine and that really helps look on the web if you never heard of it, I was not a believer till I tried it, it really can make a difference on bad days. does anyone have any other tips, I heard of lipocon drips or patches, or something like that, does anyone tried it….