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😟 No joy. Doctor said fibromyalgia is an ailment most doctor's don't believe is real. She was trying to beat around the bush and be PC so I put the words in her mouth.

She said at least 70% of doctor's don't believe in it. More doctor's believe in Chronic Fatigue. But, she doesn't think I have either.

She said all my ailments which fit those two diagnoses are my depression. She said everything from the memory loss, confusion, sleep issues, intestinal issues, everything, is my depression. And, just keeps saying to lose weight.

I was so hyped thinking I finally had an answer!! My depression doesn't explain missing the last three shifts of work because I couldn't wake up. If it were my depression, something like that would've happened a helluva lot sooner.

Melbates 7 Apr 3

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0

I've been fortunate to find a team of doctors that believe in and understand it

1

Fibromyalgia is a condition that many doctors do not want to diagnose since to do so means they might have got go to court to say a patient has it. This apparently can be dangerous for them as the insurance industry does what they can to discredit th he doctor and the diagnosis. My wife Kate has had this for over ten years and went through a clinic at Oregon Health University to be classified as having it. The result was a diagnosis of a type of sentizitation and the insurance stopped there. Kate is totally disabled, but not classified as such because of the way things are defined. What a crock. I hope you can get some help as I am sure you need and deserve it. To bad the system works the way it does.

@dalefvictor I'm sorry to hear the way your wife is suffering. 😟

0

Depression is such a vague diagnosis that can range from mild to severe. In addition to a Medical doctor, I would see a mental health counselor if you don't have one already. I would try someone who specializes in Dialectic Behavior Therapy, because they will have a broader understanding of mental health issues in my opinion. Get more than one opinion too, it may take a multifaceted approach to getting better. Good Luck.

The depression has been diagnosed for nigh on twenty years. Not the issue. I just don't believe that all my other health issues, which are "symptoms" of chronic fatigue or fibromyalgia, are caused by my depression.

@Melbates not caused by, but may go hand in hand with.

0

Get a second opinion.

I'm stuck using the county hospital because I'm poor with no insurance. They have a discount payment program.

@Melbates Awe, I'm sorry to hear that. My cousin has fibromyalgia.

@Sarahroo29 my best friend has it. And, apparently, thirty or forty agnostic-er's. I knew I wasn't crazy.

I just got home from work. I do night shift once a week. I'm in screaming pain. But, can't go to bed. Gotta wait for nurse to deliver pill box (remember they took my meds away).

@Melbates I just got home from being in the ER all afternoon with my Ranitidine issue still. I got it switched in an emergency today. I hope this is the issue. I made a post about it. I have to drink a lot of water since I have diarrhea when I need to go #2. I got tested and it isn't my thyroid. I got an emergency appt for Friday at 8 am. I think I reacted badly to the acid reflux med. They scared me at the hospital, asking me if I could be pregnant. I've been on the same birth control for over 3 years and never have had a pregnancy scare. I'm not throwing up sick every morning. I had sex over 1 month ago. I doubt I am pregnant. They didn't even test me for pregnancy while I was there! My blood labs and thyroid are good. Med errors suck. I am now being sent a different acid reflux med and I was told not to take Ranitidine tonight. For two weeks, I've had stomach issues. Last week it was from spoilt creamer. This week is a reaction from a medication. I am always hapless. I just need some good things to happen to me.

@Sarahroo29 damn, honey. I'm sorry. I'm on famotidine for my GERD. Never had an issue. I'll have to go read your posts. I'd heard of Ranitidine but my brain didn't connect it to GERD so I didn't read your posts thinking I couldn't relate.

@Melbates Yes , GERD. I called off work for 4 days. It could be the stomach flu too.

@Sarahroo29 😟😟

@Melbates Ugh.

2

Have a look at this place. They do a lot of free videos on Facebook which might be helpful. Just because your doctor doesn’t understand doesn’t mean what she says is the truth. If you can, try to find an IFM trained doctor locally to work with as they’ll be much better with these sorts of issues.

Don’t feel disheartened there is a way out. I’ve worked with CFS & Fibromyalgia for the last 5 years as a nutritionist.

[theoptimumhealthclinic.com]

Since you have said below you have limited options to work with other doctors/practitioners, I recommend doing your own reading. Working on your diet is always a big part of getting symptoms under control - you mention food being your comfort at the moment. If you start to research which foods you can eat to nourish your body you can then start to feed the body what it needs to heal. You can retrain your tastebuds and mind to see healthy foods also as comfort foods, this is most effective if you learn why certain foods are good/bad for you.

For about half of suffers, gluten and diary are significant triggers and after a few months avoiding these foods, a percentage of symptoms disappear or greatly improve. It is worth every CFS/Fibromyalgia sufferer doing a 3 month strict GF/DF diet to see if it helps. It does have to be strict for 3 months, if you have a cheat day once a week, immune antibodies never drop and you won't see the benefits. (No cake is worth giving up your health for). I've had clients insist they couldn't possibly give up gluten but when they've seen how much better they feel without it, they become completely comfortable with finding alternatives.

Likewise, you mention past trauma - while often classed as 'emotional issues' they have measurable effect on our stress hormones and immune system and thus are a large part of why people with trauma or anxiety are at increased risk of CFS/Fibromyalgia. The facebook videos the clinic above put out often go into how you can work with these issues and they do an online course primarily aimed at USA clients (they are based in the UK) to discuss the emotional recovery that often needs to be a part of CFS/Fibromyalgia support. We can't undo the past but we can learn how to change the way we think and feel. PTSD is more difficult but still

Below are some books I would recommend you take a look at. It is also worth being aware that fibromyalgia often (but not always) presents in people who have thyroid issues AND standard medical reference ranges or only testing TSH and T4 can miss many cases of low functioning thyroid. To address this properly, you would need to work with an IFM trained doctor or nutritional therapist. Many do offer skype or similar and some may offer lower cost appointments for those not on insurance - it is worth asking. Ditto digestive issues - getting the diet right is a big part of this but sometimes there are underlying things that are more easily addressed with the knowledge of someone trained in this are (GPs are generally not well equipped to deal with digestive issues).

It is important to acknowledge that it took your body many years to get to this point and likewise it will take time to unravel the issues. There are no quick fixes but doing the things you can with diet, sleep, gentle exercise to improve your health and symptoms will help to improve quality of life.

[amazon.com]
[amazon.com]
[amazon.com]

1

If there is any way that you can keep trying to find a good doctor, do it. I know people who have firbromyalgia and they've been through what you're experiencing. It is very difficult. Don't give up.

I'm stuck using the county hospital because I'm poor and don't have insurance.

2

I honestly believe it has something to do with the new organ found. The interstitium. They never found it because the collection of the samples dries it out. I think it's the layer under the epidermis or thereabouts. So I can imagine why they hadn't discovered the source of fibromyalgia if they missed this organ completely.

[fibromyalgiaresources.com]

2

Doctors look for simpler and more treatable diagnoses first. It's the old adage about hearing hoofbeats and looking for horses rather than zebras. Fibromyalgia is exceedingly difficult to Dx because the only measurable sign is the presence of hypersensitive nerve spots. The symptoms listed are nebulous and show up in a mile-long list of ailments. I think a differential diagnosis might be the way to go. I had that done and that's how they found I have narcolepsy.

3

First off, let me say that I believe fibromyalgia exists. I have known 2 people who were afflicted. It is an insidious disease that can affect one's entire life.

However, I can understand somewhat when others dismiss it. There are people out there who take advantage of the nebulous nature of fibromyalgia for their own purposes, just like there are people who abuse any situation. This hurts the ones who really suffer, unfortunately.

For instance, take the 2 people I knew: both were co-workers, women in their 30s or 40s. One woman was reliable, good at her job, friendly....just a good, hardworking woman who happened to suffer from this disease, but didn't let it get her down. She was admired and respected by all her co-workers.

The other woman was just the opposite. She managed to get put on "intermittent disability", which meant she only had to work 100.25 hours each month in order to accrue vacation and sick days. And that's pretty much what she worked. (I know because I did her timesheet.) Of course, with her off so much, her coworkers had to pick up the slack and do her job along with their own. And when she was in the office, it wasn't much better. Once I found her lying on the floor of her cubicle reading a magazine, while others were doing the work she was supposed to be doing.

Seeing someone like that, along with the indeterminate nature of the disease, could be why some people do not believe it is real.

marga Level 7 Apr 3, 2018

My supervisor is treating me that way because of the number of ailments I have and the number of days I need off for doctor's appointments (a doctor's visit on the city bus is an all day affair). It hurts because she's seen how hard I work. She's seen that, in the past month, I've worked through lunch, unintentionally, all but two days. And, yet, treats me like I'm lazy for being so tired. Oh, and the comments about my caffeinated drinks..... Rolls eyes

2

Diagnosed (miraculously) with FM in my early twenties.

Living with chronic pain from an invisible illness is bad enough; when you're doing so as a young, even younger-looking, slender, healthy-looking, intelligent person, you're not just not believed: you're vilified and despised as a lying malingerer. It's enough to drive a person to suicide, and keep them from trusting people forever. I should know.

Doctors don't always listen, nor take you seriously. They're not always honest about not knowing or understanding something. Like anyone, they can be prey to convention and groupthink and resistant to "out of the box" approaches or ideas. Like anyone, their egos can exert significant influence over their thoughts and behaviors. It can be enough to make a person feel they can't be honest about their experiences with their physicians for fear of being inappropriately judged and improperly treated. I should know.

P.S. I cut dairy and gluten out of my diet 1.5 years ago and my FM symptoms vanished like magic. Not exaggerating.

I met her last year on her very first day and I was her first official solo patient (no senior doctor hovering). She's believed me and treated me for all my other ailments. She just doesn't think FM exists. Said she'd write the diagnosis in my chart if I insisted but it wouldn't change anything because I'm already on the standard FM treatment- antidepressants. Said movement and weight loss are the only other things I need to do.

1

Diagnosed with fibromyalgia over 20 years ago. Causes depression, chronic fatigue. Find a new doctor-should be diagnosed by a rheumatologist not general practitioner. There is a support group here you should check out for Chronic Illnesses/Diseases.

I thought there was but didn't find it when glancing over the groups.

I'm stuck using the county hospital because I'm poor with no insurance.

apply for Medicaid. I'm retired and qualified.

@sassygirl3869 I'm 37. No children. Not disabled by government standards. Don't qualify.

1

This sounds nutritional and activity level related. You might seriously benefit from starting with Vit. D supplements and adopting a more whole foods/plant-based diet (and cutting out soda, junk food, fast food, and sugary food). After you cut the bad things out of your diet.... instead of focusing on weight loss, just work toward being more active -- more steps per day -- swimming --- stretching -- yoga ---etc.
When you have nothing to lose...why not try something different?
I would encourage you to read "How Not To Die" by Dr. Michael Greger, MD.
It might just change your life....and isn't that what you really want?

Source:

I'm recovering from a suicide attempt. I quit smoking. I have Major Depressive Disorder, Social Anxiety Disorder and PTSD. Food is my comfort and, now not smoking, I'm constantly hungry.

You do realize that your relationship with food is unhealthy, right? Food is not "comfort"....food is for nutritional purposes only to fuel the body. In reality, you are not "constantly hungry" ...but you are replacing the hand to mouth motion of cigarettes. I highly recommend therapy and/or a support group to work through these issues.

@SkotlandSkye @melbates Food addiction more specifically is a desire to eat carbs and sugar. Nobody has a compulsion to overeat protein and vegetables. As a recovering food addict, and someone who has lost 150lbs, I'm quite familiar with the disorder.

@SkotlandSkye you do realize it's part of my depression, right? Thank you for your condescension.

thank you, @jperlow

@Melbates you can get yourself out of this rut. but you will want to see a psychologist (assuming you do already) that not only deals with PTSD and GAD but also addiction related issues. Your psychiatrist should be able to prescribe you the correct meds although I think if you had access to medical cannabis, at least CBD in TX would help. If you moved to FL PTSD is a qualifying condition for CBD and THC use. I’m a patient here. Certainly cheaper than moving to CA and not as far from TX. I would also start using mindfulness apps like headspace. Helps me. Feel free to PM me.

@Melbates if you continually argue for your limitations...they become yours. Either you are willing to change, or you aren't. Stop being defensive and start looking at reality. As I said, your relationship with food is unhealthy. You aren't really "hungry", as in your body is not in need of what you are eating. I also said to seek help. What specifically is not true and just me being condescending? The bottom line is that you have the ability to take control of this instead of just labeling it and accepting it as a permanent situation.

0

Ugh, I'm sorry about your situation. How discouraging. I'm guessing that antidepressants haven't been effective in alleviating your symptoms?

Nope. I was on Celexa prior to the Christmas Eve suicide attempt. Now I'm on hydroxyzine and venlafaxine. Not sure which is which. One is depression, the other anxiety. And, one of them has given me high blood pressure.

0

Don't you love it when an over-weight doctor suggests you lose some weight? πŸ™‚

LMFAO!!!!! Actually, she's quite young and thin. I think she's just following along with common thought because she's new. Hasn't been a full year since she started her practicing. I'm stuck using the county hospital because I'm poor with no insurance. It's a teaching hospital. I was her first solo patient (no senior doctor hovering). She's believed me about all my other ailments.

1

I hate to say this, because I've suffered years of the same, but depression can make you unable to wake up on time. I have struggled with severe depression for 98% of my life. I can't fall asleep and when I do I can't wake up. I can't remember anything. I feel like shit all the time....etc. depression can do SO MUCH to you that you'd never think is related to depression.

I am diagnosed with fibro, and on top of that I'm finally getting diagnosis for another problem. I know how shitty it is to struggle for years to find answers, and then when you think you've got it, have it ripped away. It is awful.

I hope you find help, for whatever it is. Keep trying to figure it out. See as many doctors as you need to. Just, don't close yourself off from their suggestions completely.

I have to use the county hospital. I'm limited on options.

I'll have to get back to you. I do night shift on Tuesdays and just got home. TTYL

@Melbates that is unfair. See if you can find other places for reduced fees. I had to travel 400 miles to find a doctor to treat me

@LadyAlyxandrea city bus, no insurance, county hospital has discount program.... Not many options available.

I really just don't think it was my depression. I've never had a problem getting up when the alarm goes off. I literally turned it off and back to sleep. I read an article recently about what not to say to someone with a chronic invisible illness. The author didn't state her specific ailment but talked about when you try to figure out how much energy a task will cost you. I don't do a lot of stuff because it's just too much exertion. I sweat and pant just getting dressed in the morning. I can't catch my breath. Especially on exceedingly windy days like today where it feels like the air is being stolen out of my lungs. I'll eat a hunk of cheese for dinner because anything else is too much work. I'll go for a week before going to the mailbox. I'll put off buying groceries because it's so much work with the bus and carrying the bags, etc. I explained this to her. She still wrote it off as my weight.

0

I have chronic pain I live with every day. Had bad insomnia way before the pain. Cant say depression is a result of either condition. I do get stressed because of my physical limits. I was very athletic when I was younger sometimes going on 20-mile hikes. So now I am boxed in with pain I still enjoy stuff physical activity now it takes 3 or 4 days to recover from something as simple as standing for an hour. Depression, dont think so stressed out yes.

The physical activity thing is part of it for me. Recently read an article what not to say to someone with chronic illness. The author didn't directly address her issue but stated she has to recover after doing laundry or walking to the mailbox. Or, put thought into how much exertion will I need to perform this task? That's when chronic fatigue or fibromyalgia hit home for me. I said that to doctor. She still said it's my depression. I looked up the symptoms of fibromyalgia. And, like, everything fits. But...... it's not real.....

@Melbates The doctors have to answer to the B.S so even if she had an accurate prognosis she most likely is mandated by some bureaucratic mandate that she has to sluff off what the real reason is.

1

Stop drinking milk and eating cheese. I think you will feel better. Dairy products contain a lot of cow pus because mechanical milkers irritate the teats and cause pus. Pus is an irritant that has adverse effects on humans when ingested.

That is sort of pseudo-sciency. For some people cutting out dairy DOES help, but often what replaces it (soy milk, most commonly) can exacerbate other problems. The bigger problem caused by dairy products is the way the milk is processed. Proteins are damaged, fatty acids become indigestible, and some people simplay can't process them. Typically, it is worse with low-fat products than with whole milk and worse with ultra-pasteurized than pasteurized milk.

There is no cow pus in milk. If it does contain "debris" it is filtered out and then pastuerized. The cow pus thing is a myth

Cow pus? Do you have any links to scientific data that says that, or it is just your own theory? I would think that Pasteurizing the milk would render any bacterial contamination harmless. There are also frequent tests on raw milk to control contamination.

@Meep70 Not "sort of" pseudo-sciency it's total bullshit.

@Meep70 Can we agree drinking milk is not healthy?

@HereByAccident Did you ever work on a dairy farm?

@jperlow @dahermit @HereByAccident @Meep70
Thank y'all for replying for me because the only thing that came to my mind was "Dafuq?"

@nicknotes No we cannot agree. Cheese and milk is very high protein.

@jperlow

@nicknotes Yeah so a lot of animals are disgusting. So what. If this is going to be a pro-veganism argument then I'm out. You really don't want to know what I think about vegans. You ever seen a chicken farm? Worked on ANY kind of a farm? What the hell do you think vegetables grow in?

@nicknotes No we cannot agree unless you provide some links to scientific studies.

@nicknotes Nope. no agreement, here. While there ARE some who do better to avoid dairy, that doesn't negate the nutritional value of those products for many. The information you have that villainizes dairy is largely propaganda and hyperbole and the video you posted to prove your point proves nothing other than that a cow had an abscess. Please do some research taking into account a wider range of views.

@jperlow You said, "Not 'sort of' pseudo-sciency it's total bullshit."

I was trying to be nice, and going for a gentle delivery. πŸ™‚ You are certainly correct.

@Meep70 Check out this link
[pcrm.org]
Do you still think Milk is healthy?

@dahermit Check this link...
[pcrm.org]

Still think Milk is healthy?

@Melbates Check this link
[pcrm.org]
Still think Milk is healthy?

@HereByAccident Check this link
[pcrm.org]

Still think Milk is healthy?

@nicknotes Yes. One article from one highly biased website is not enough to debunk a LOT of science and history.

@Meep70 Or maybe you are being mislead by the Milk Lobby?????

@nicknotes No tinfoil hat, here, but I do dig deep and draw from multiple sources from different disciplines. This guy explains it well. [fitnessreloaded.com]

@Meep70 So who is Maria? No last name? How can anyone check her background?

@nicknotes Who cares? The article explains my position and provides good information backed up by links. It is clear that we disagree and will not resolve that. I suspect that you are FAR outnumbered, here, though, sticking to your pseudoscience like so many fundamentalists do to their ancient mind-control texts, the evidence is not strong in your favor. Since I don't relish circular arguments, I am disengaging from this one.

@Meep70 @jperlow @dahermit @herebyaccident

I knew his "proof" was bunk as soon as I saw the sketchy website.

If you Google the name of that organization, these two articles are number's six and seven on the first page results.

[activistfacts.com]

[acsh.org]

2

Fibromyalgia (fibro=fiber and myalgia=pain) and Chronic Fatigue are SYMPTOMS. Doctors that diagnose those are doing a cop-out and throwing pills at symptoms, rather than finding the cause of said symptoms. It is akin to going to the doctor with a sinus headache and the doctor diagnoses you with a "disease" called "craniomyalgia". The doc gives you pain pills, tells you to eat better and exercise and says"this will make it bearable." Meanwhile, numb from the pain pills you don't realize that the sinus infection doesn't go away and actually gets progressively worse over time, spreading and becoming a sore throat, a cough, then pneumonia, before the actual infection is noticed.

That is the state of medical care, these days, and is precisely what they are doing to you. There IS an underlying cause, and there are ways to figure out what is going on. It is likely that another doctor or educating this one will be necessary, though.

I don't know how to explain it to you......

I have to use the county hospital. Not really a choice of what doctor I see.

For the sake of clarity, I am not discounting ANY of your symptoms. Been there done that, to some extent. Though my experience is not the same as yours, there are parallels.

I see people all the time who complain of the "syndromes" you mention. These people harass their physicians to treat the symptoms of which may or may not actually exist. Most of these people are over weight or they suffer from depression. They physicians do all sorts of tests and come up empty because there's nothing to diagnose except them being over weight and/or depressed. The patients complain about so much pain, they can't do anything so if the doctor refuses to treat phantom symptoms, he/she is labelled uncaring but if they do prescribe pain pills, they are slammed like you are slamming them. Fibromyalgia is BS, so is Chronic Fatigue Syndrome. Chronic pain is legitimate, if the source is found like arthritis etc.

Agreed with Meep. Your doctor can run tests to rule out other issues, but go to a rheumatologist to get more intensive tests. Get your vitamin D levels checked. Low D levels mimic the symptoms of fibro. Change doctors if necessary. Not all doctors feel the same. I haven't come across one yet that poo poos the fibro diagnosis. As Meep said, it's a diagnosis of symptoms, not the cause. Keep at it until you have an answer. I am. 😟

@HereByAccident I'm not slamming my doctor at all. Where did that come from?

@Alimacbean I'm stuck using the county hospital because I'm poor with no insurance. They have a discount payment program.

@HereByAccident please do me a favor. Go to my profile. Look at my picture. For context, I'm 6'1". Then, come back and tell me I'm obese.

@Melbates I know everyone has an opinion and suggestions, but if you're interested in hearing about the research I've done, feel free to message me.

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