Bless your heart! I am a Germinoma cancer survivor and have had multiple medical issues as “leftovers” from the cancer since then. (A Germinoma is a germ cell tumor that they discovered in my brain.) When I had been in remission for 11 years, (2013) I got two very bad colds, back to back, that lasted for about 5 months. I had two anaphylactic reactions to Robitussin and Sudafed, which were two cold medicines I’d taken all of my life. I looked on the packages and realized the only medicine that the two shared was Phenylephrine. A little over a month after this happened, the lymph node under my right arm became very swollen. Fast forwarding to April of 2015, I was having severe muscle spasms in my back that were musculo-skeletal related. I had been to see a Chiropractor the week prior to and he had worked with me for 4 hours (I had been experiencing severe muscle spasm in my back) and said that whatever was wrong with me–it was not related to my spine and he thought it was musculo-skeletal. My neuro-oncologist, who had handled my cancer before thought it had come back in my spine. After a week in Duke Hospital with a 3 hour MRI, a lumbar puncture, and multiple physical tests they began to kick around the idea that what I had was Fibromyalgia. Their suspicions were confirmed after I had a nerve study test done. It took 28 different doctors to diagnose me.
Prior to them discovering I had cancer, however, I was in your shoes. The Physician’s Assistant I was seeing told me I was having migraines the first time I saw him and prescribed me some Ibuprofen 300. Less than a week later we were back in his office and he was furious that we didn’t like his diagnosis. He took my dad out in the hallway and told him that I was just wining about my headaches to get attention and that if my parents ignored my headaches, they would go away. At the time, my pupils were so naturally dilated from the pressure of the brain tumor, that you could no longer see the Iris of my eyes. Three months of this routine, my parents finally worked around him and scheduled a CT scan at the local hospital and that’s when they discovered the massive tumor in my brain. When I checked into Duke Hospital the next day, the Neurologist on call said that the tumor was so massive, she had no idea how I was still alive, much less still conscious. Believe me when I say, I know what it is like to be bullied by doctors.
My advice to you would be to seek other medical care. I currently live in a rotten area for health care and know how frustrating it can be to be taken seriously. Go on the Internet and do a little research: are there any hospitals in your area that specialize in chronic and widespread pain? Are there any in your state? This may sound extreme, but you look outside your state. Have they explored Hormonal therapies for you? Standard birth control in various forms help many women who have difficult periods as I do. You may have to spend some time working with a valid doctor to find which one works best for you, but it’s better than not having any options. My hormones are so insane and give me such awful menstrual cycles that birth control is a life saver for me!
Also, look into chronic pain management locations or hospitals that can help you with medicines or exercises to help manage and refocus your pain. DO NOT continue to see that same doctor! My guess is that all he wants it your money. While you are looking, there are also many website you can Google or use any search engine to help you find exercises to help. Also, shortly heating dampened washcloths in the microwave and applying them to your sore areas and taking as hot of a bath as you can stand will help in relieving the pain to where you can learn to work around it. Ice packs work for some people too, but not me!
If you can’t find a hospital that you can travel to–you can call and consult with doctors at other hospitals. If you’re in New York and you find a hospital in Florida that you think would be great for you–that is not practical. But you can call and tell someone what your situation is and ask what you should do. Having an undiagnosed issue that no one understands is the worst and I wish you the best of luck in finding a solution!

Hi! Trisha, your post says it was four months ago. I wondered if treatingandbeating.com has helped you. Thought I’d ask before diving into it and buying the book, etc. Please let me know. Thanks, Lisa Jones

Some people think they know everything! Not only do we lupies have to deal with our illness, we have to deal with so many ignorant people! It sucks.

For me its mostly just people finding nice ways to say: “It’s all in your head”…I suppose some of is, but not in the way they mean.

It may not seem like it, but I think that she was trying to help…? Some people just don’t know proper etiquette when it comes to those things.

🙁 Hang in there! It’s better to accept your situation and find the happy/more uplifting spaces within it. Redefine “coping” to suit your particular situation and needs. You will peace that way…. it’s what I do.

Lol, good comeback Catherine!

I agree with so many of the “just try _____ it will cure your _______” comments, that they are so annoying!! I realize that family and friends have good (but often thoughtless) intentions….but as one who has suffered from fibromyalgia for 20 years ( the last 10 on very strong narcotic pain meds, a dead end by the way) and also a (former) Registered Nurse….don’t you think that if someone truly found a “cure” for fibromyalgia, I would already know about it through the several reputable FM organizations and support groups I keep up with??
The latest well-intentioned friend just told me that his chiropractor said “fibromyalgia is caused by Forward Head Position, a subluxation of the C-1 thru C-4 vertebrae (top of the neck) which puts strain on the dorsal horns and reduces endorphins ( as this is where they are produced). So realigning the neck fixes this and allows the natural pain mechanism in the body to work.” Huh??? Fibromyalgia is MUCH more complicated than that, involving lack of deep, restorative sleep, low neurotransmitters, stressed out adrenal glands, maybe thyroid imbalance, increased substance P, and a host of other imbalances….but those are the main ones I can think of right now.
I just started a program with Dr. Rodger Murphree, a functional medicine doc who has specialized in FM and CFS for 18 years and has helped 2600+ people feel better and get their lives back. May be my last hope, and I am a former RN and researched his program, and think it is sound scientifically and makes sense. He wrote the book “Treating and Beating Fibromyalgia and CFS” 5th edition….his website is
treatingandbeating.com. I encourage those with fibromyalgia and CFS to check him out and see if what he does makes sense to you. lots of free info, videos and especially the actual patient testimonials. God bless you all in your journey to better health, and may no one ever say to you again, “you look fine, it must be all in your head… you are lazy and seek attention”!!!!! Thems fightin’ words!!!

Properly diagnosed by hospital consultant and yet people still dont believe i am ill keep saying you look ever so well,idiots have they heard of makeup it hides a multitude of sins.People say i handle things well as i am suffering fibromyalgia ibs and husband blindalso has ms epilepsy osteoperosis testosterone deficiency. Thing is i am not coping well,Little do they know i am not coping at all.And idiot comments from family and supposed friends doesn’t help in the slightest. Julie&wayne

the favorite on my campus: it’s the gluten. if i would only stop using gluten, all would be well. except i’m not gluten sensitive. and it didn’t help. i just craved pasta!

My favorite is one my ex used to say every time I said I wasn’t able to go out anywhere or hang out at his house. “Just do it, it won’t hurt you..what’s the worst that could happen? If you REALLY wanted to see me you would just do it.” My background is I have Autoimmune Autonomic Ganglipathy (Or easier on the tongue: Autonomic Neuropathy). The worst that could happen is if I push myself overboard is death because my heart could go into a deadly arrhythmia. So I ended up laughing in reply when he kept saying it to me. I don’t think I need to say why he’s an ex!

My favorite is it’s all in your mind

“You just have to push through it” (the EDS that accompanies narcolepsy.) Another favorite, “it’s probably just (insert weird nerve issue here.)” And, my #1 favorite, overheard from a family member, “There’s nothing wrong with her, she’s just lazy and looking for attention.”

#NSA is watching you.

Stage IV B-cell lymphoma here. The worst/most hilarious one that I’ve gotten to hear so far has been, “There’s this great asparagus diet/cleanse that works wonders for people with poor health. Have you tried it yet?”

What makes this especially hilarious is:

1) I can’t stand asparagus. At all. As in, I throw up every single time I try eating it, so I no longer bother, and…

2) The very previous week, I had said to my wife, “At least nobody has suggested some kind of crackpot asparagus cleanse.”

I swear sometimes somebody is looking over my shoulder and taking notes.

“You should try these essential oils …they’ll cure your pain, fatigue, acne, and bad breath too!”

The worst one for me is: you need to try yoga/tai chi/current trendy exercise fad.
My issues get worse with exercise. Shipping in a grocery store us a workout from hell for me. And I was a competitive weight lifter, personal trainer, rock climber and cop. Tell me that I need to exercise to cure all I have wrong with me – that’s it. I’m never speaking to you again.

I have bone marrow failure which is life threatening. It has an significant autoimmune influence and survival rates are highly variable. Some can live for several years with medications, others through transplant. Transplant is potentially curative but the reality is complications can occur that can be dehabilitive and or life threatening. Comparable to cancer. I get the try______insert supplement. But the number one thing I hear is Robin Roberts survied breast cancer and one marrow failure therefore you will be fine just believe. The number one heart wrench comes from statement like so n so has cancer and they work therefore I resent people like you who are capable of finding work and paying for your own insurance. I resent being forced to pay for your obama care subsidy.

OMG, that is terrible. I cannot believe someone would be that cruel.

Haha! I was told by numerous family members that it was my own fault because of my weight (that I’d gained from lack of mobility, spinal steroid injections, medication side effects etc., etc.).
So I worked really hard, lost 11st and my chronic pain got worse the more I lost!
It turned out that the fat had been cushioning my joints, and now it wasn’t there my spine had no buffer. Its a vicious circle as I’m now fighting daily to keep the weight off but am on MORE medication, MORE steroid injections and I’m less mobile.

Great idea ‘supportive’ family. Thanks!

When I was diagnosed with my illness a family member gave me a book (I forget the exact title since I promptly tossed it in the trash) on how to welcome death without fear. Gee Thanks. There’s the support I was looking for.

Your co-worker is lucky to have you as a colleague. You sound like someone who truly understands. But boy, that other co-worker sounds so familiar. It’s sad, isn’t it?

I get frustrated with the constant questions from the same people… My family and or friends. Geez, if you have not understood what I’ve been telling you for the past 20 years… GOOGLE IT!!!
I’m just ranting here… Don’t bring out the pitchforks…

I have a chronic illness and don’t find people to be very sympathetic or understanding, but I don’t see what’s wrong with some of these questions. If someone is not familiar with your disease, they might be looking for enlightenment (“…what is causing the problem?” seems like a logical place to start). Some of the suggestions are logical because some sick people are not at all proactive–just go to the doc and swallow whatever pills prescribed without making lifestyle adjustments. But, sometimes I feel like I’m being blamed for not doing all I can or that I’m a hypochondriac.

Wow,OMG,LOL.com … I guess people really do say the dumbest things…I thought that it was children but Who am I? Just someone who was born with Sickle Cell and is affected by it on a daily basis…