Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Does anyone some times almost believes "it is all in your head" answers?

Feb 28, 2017 3:53 PM

I don't know how to my thoughts about my pain and health issues.. I feel insecure about my condition and the fact that I am really ill..

When I look at both healthy individuals and chronic ill individuals, I sometimes think that my pai can't be that bad. My health can't be so poor.. I can't see anyone who has same level of disabilities as me.
Like: no one can have so much issues at the same time and I am just to lazy to "get over it" and start working/studying..
Nobody seems to react to how poor my health is.
Even my fiancΓ© don't show to react when I look like a pale zombie..
No tests shows anything wrong, on paper I am the picture of good health. A psychiatrist even asked me if I had a somatization disorder...
Doctors and nurses point at the psychiatric hospital, but they don't have anything to treat me for. They just have me in their papers that I don't loose my disability welfare..
I was at an eating disorder clinic and when I suddenly lost weight, they just looked at me and told me that this is nothing they can do. It is not ED..

Last week finaly two dermatologists came with some hypothetical diagnosis(sle or sjogrens), buuut I still have to wait a while before I can see the key specialist(rheumatologist)...
It helped a little to say to myself that I am not "making this up".. But still.. Can it just be something my imagination ?

Does anyone else feel this way?
After diagnosis, do you have times you feel like it can't be real?

Feb 28, 2017 4:01 PM

I have sle lupus and I still wonder if I'm blowing it out of proportion even when I'm at my sickest. We don't look sick to others. But we are very ill. Our own immune system is attacking and trying to kill us.
My Hubby sees the sick. But he's the only one who sees the worst of it.
Add in a lot of the meds for it make me sick in one or another too.

Feb 28, 2017 4:14 PM

Thx for responding Gibber <3


Can I ask how did your day-to-day life change after receiving diagnosis and started treatment?

Right now I don't understand how to function in any way.. Even when I don't live alone and get a lot of help to take care of myself..
I think I got a flare up some days ago and it literally feels like I am falling apart...

Feb 28, 2017 4:55 PM

I'm sorry to hear that. For record I believe you and I understand.

My my life changed a lot in the 2.5 year fight to get answers as to what was wrong.
All my joints started to hurt it spread and progressed fast. Weird things would show up out of nowhere like swollen taste buds, burning facial nerve pain. Sometimes staying permanently and sometimes disappearing and coming back another time.
I'd get infections out of nowhere. Get mystery sicknesses.
Went to many Dr.'s including 2 Rheumies who blew me off. Went to a pain clinic.
Saw an internist who finally diagnosed me and put me on meds. Now he's doubting himself and I'm yet again scheduled to see yet another new Rheumie 5 hours away.
The meds are a whole other struggle. Lupus is an autoimmune disease which means your own immune system is attacking itself. And it can attack anything, organs included.
So immunosurpressents are necessary.
I won't lie the meds can be rough and there's lots of trial and error.
One med they want me on that I will not take is Prednisone. I was on methotrexate ( a chemo drug) but it affected my lungs. Now I'm on Immuran, Plaquinel, Perocett, Naproxen. Also Clobazm for epilepsy.
The doc thinks I've had lupus since I was 13 and diagnosed with epilepsy. I'm now 46.
I also lost my bladder to IC at 28 which now they are telling me was lupus too.
I also have Raynaud's in the last year, a symptom of lupus.
The worst part is joint pain (lupus arthritis) and Rheumatoid as well, and fatigue.
Other things happening are oral nasel ulcers, heat/sun sensitivity, shingles, the start of kidney involvement and lung involvement.
It's progressive and progressing fast for me now.
The meds most of them take up to 6 months to know if they are going to help.
Most Dr.'s don't know a lot about it or are fashioned in their beliefs about it.
Blood tests are not definitive so you can test negative and actually be positive and vise versa.
A lot of Dr.'s will only listen to the blood tests.
I even had a positive blood test and they told me it was false even with all my symptoms.
I'd say research like crazy and know your stuff. Know about the meds too.
Will have to be your own best advocate. If you know in your "knower" that something is wrong. Don't give up finding answers. You know your body better than any Dr. ever will. It's a long hard process to diagnosis because it mimics so many other things. There's also overlapping disease such as sjogrens, Rheumatoid disease, thyroid disease.
I wish you all the best.
It was relief for me to finally have a diagnosis. Then I didn't feel so guilty and embarrassed for always having something wrong. <3

Feb 28, 2017 4:59 PM

Stress is a big trigger of flares.

Feb 28, 2017 5:42 PM

Thank you for your advices <3

I lost my gallbladder because of it was inflamed and contained over 50 gallstones. It was leaking, but nothing showed up on bloodwork..

I have Raynaud's and it might have began to do some damage on my foot already.
Joint pain, fatigue, rashes (including butterfly rash and oral ulcers), signs of sjogrens, epilepsy looking seizures, some times swollen blood vessels(that burst), low fever, episodes of really low blood sugar levels, chest pain, hard breathing, high pulse, episodes of low blood pressure, tremors, a flu-like feeling it I get a little tired, I get almost every infections people around me has been exposed to and a lot more..

So right now I don't care what it is, as long as I get some treatment soon.. I am going to loose my part-time job as politician..
I am supposed to travel to work on this upcoming Sunday morning and home on Thursday night... up to 12 hours work a day and some part of the meetings are streamed live.. That means I can in worst case faint or get a seizure on live TV...
(Sorry for complayning, it just scares me)

Feb 28, 2017 5:54 PM

Wow it sounds like you have every symptom. Honestly get treatment as soon as you possibly can. Look up scleroderma. You have a lot of symptoms of that.
Just be warned that although very necessary the meds can make you sick too.
If you're willing, keep me updated.
Have had blood work to test if you're ANA positive? Have you had a urine test to check for protein?
Gallbladder issues are a symptom keep an eye on your toe.

Feb 28, 2017 6:11 PM

I am waiting for the ANA test results. Took new tests a week ago. I think they took a deeper ANA(not just the standard screening).
I have not had a urine test in almost 2 years...

If the test is negative and I don't get a sooner appointment(in the beginning of may), I am considering to ask my family for money to go to a private clinic.
The rheumatologist I would like to see uses international studies and don't just look at blood work.
Many norwegian doctors just look at bloodwork(if the bothered*) and stereotypical signs..

* a few weeks ago I met a endocrinologist who talked about my blood sugar levels. All is normal and those 2 times you came with seizures I had normal levels.. I looked at him like he was a dummy... I told him to check what seizures he was talking about(epileptic-like seizure) and show me the tests of my blood sugar levels... He realised that they FORGOT to take a test of how my blood sugar levels change before and after sugar water... πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚
(If you checked the post last week about how this hospital misplaced me to section for overweight and obesity. Days before I met this endocrinologist)

Mar 04, 2017 1:31 PM

Oh my goodness. Some Dr.'s can be so brutal. I'm sorry they missed that. Definitely keep advocating for yourself. I was ANA positive 3x and they told me it was a false positive even with all my symptoms. They were wrong. It isn't false.
You could ask to be treated for autoimmune disease. If the meds help that's an indicator too. You'd have to give the meds at least 6 months to know though. Treatment for most autoimmune disease is the same.
If you do have it at least you're being treated to slow down the progression of the disease while wait for answers and hopefully relief in the process.
As far as Raynaud's you can get blood pressure med. That will help with that.

Mar 04, 2017 2:14 PM

I Norway it is hard to get treatment without a diagnosis..
If you ask for meds, they accuse you for being a drug addicted..

My health has to decrease pretty much before dr.s' take me serious.. Only way to get checked for epilepsy is getting a seizure alone in public and random people call for an ambulance..

Dr.s' don't want to test any meds for my seizures, because they haven't seen any epileptig activity during EEG.. In 20 mins.. New EEG for 2-3 days in two weeks. If they find activity, I can get meds. If not, wish me luck... πŸ˜‘

Both my fiancΓ© and I are worried for how much I have to go through before I can get any help. πŸ€•
Sorry for being negative and pessimistic about the future. I am just really frustrated. Even my new primary doctor looked like she was doing her best to hold back tears(it was her first workday)..

Mar 04, 2017 2:40 PM

I'm sorry it's hard. No need to apologize. I know how frustrating it is. The medical systems are so messed up it seems in most countries.
My epilepsy showed up on tests when I was 13. The last few I had which was over 10 years ago and longer never showed up on tests. I don't know what it would look like if I was tested again now for it. I'm on meds for it and I still have small seizures. The meds have controlled the big ones.
Internist thinks it's lupus caused.
I'm careful not to say too much lest I lose my driver's license.
I hope you can find a Dr. to back you before something really bad happens. I'm surprised with the Raynaud's showing it wouldn't wake the Dr.'s up. That's what finally woke up my GP when my fingers turned blue in front of him.
I'd suggest taking pictures of anything visual like swelling, rashes. If someone could even capture seizures on video it might help. It seems Dr.s need to see to believe unfortunately. πŸ˜₯

Mar 04, 2017 3:14 PM

Nurses, ambulance workers and psychiatric hospital staff has observed quite a few seizures...

My Raynaud's didn't show up, but my toe did show traces of Raynaud's..

Mar 04, 2017 3:15 PM

You must be so frustrated.

Mar 04, 2017 3:22 PM

Yes I am..
Today we had a friend over who does not know much about my health. Of course I had 2 seizures in front of him.. 😣 He haven't seen it before..

Mar 04, 2017 6:32 PM

Oh no. I'm sorry. <3

Mar 05, 2017 4:00 AM

BUT, I have a amazing fiancΓ© who supports me no matter what. He don't mind to come along to appointments when I have a real bad brain fog, do most of the cooking, support and help if I need it, drive me everywhere and do those things I was supposed to do at home or get outside if I can't.

Everyone around me tells me how lucky I am to have him all the time. Even me mom adores him.

We are both really frustrated about the medical system and my health issues. For a long time I was scared if he was going to leave me because of this, I am kind of nervous about the still, but he tells me again and again that he is not going to leave me. "We have gotten through all this bad times and days. We are going to get through this one to together" he says when I want to give up everything. ❀

Mar 05, 2017 4:20 PM

IceAki, sounds just like my husband. I know that feeling though because I've been burned to many times. I was married once before and he left me and the kids for a crazy fruit cake who thought she was going to get custody of both my kid's! In the end they both lost and my husband now recently adopted both of my kid's, I couldn't ask for a better man than I have now. Don't worry about your fiance leaving, if he hasn't left , then you have a keeper! Sounds like you have an awesome support system! I am lucky to have an old timey doctor (he is in his 60's) who believes in what his patient's are telling him and he doesn't give up until he finds the cause of their pain and or symptoms! It took us a year to get the diagnosis of Sjogrens syndrome and Lupus, he referred me to a Rheumatologist ASAP! It would have taken me months to get in to see my rheumatologist for the first time but with both Diagnoses he had him rush me in to start treatment right away, but before the Rheumatologist had me start plaquinall he wanted me to do a dry eyes test and a full plaquinall screening to see my eyes could stand to be on the medication. So I see my rheumatologist every four months now and an eye surgeon every 6 months, just to make sure my eyes were okay, my first test was iffy if I should be on it, but the second screening on my eyes were better than the baseline test!

When I first got my diagnosis I was taken back a bit, but then I decided to do as much research as I could and I joined a Sjogrens Syndrome support group on Facebook and I'm learning a lot more about it and trying to do everything I can to keep the progress of the Sjogrens Syndrome away as long as I can. I'll be praying for you and be praying that you get a doctor who will take you seriously! Much love, support and Prayer's to you and your family! A little sunshine to brighten your day!🌞

Mar 14, 2017 10:31 AM

Feeling really sexy.. I am having my EEG test with videotaping for 2-3 days from today. Now I hope to get a seizure or two while I am in hospital. To get done and maybe get some treatment..

Fun fact: the rheumatologists are upstairs.. So close, yet so far..

Mar 14, 2017 11:17 AM

I experience the pale zombie look.
My kids Dad use to say" herb your with the kids your all happy. It with me your "always sick or sleeping ".

Of course I'm happy around my kids . Why do they need to see me suffe?

You would think this man would have taken care if me instead of stressing me out or leaving me yo care fit our family.

I work, I'm a mom ,a sports mom , team mom, maid, therapist and spy.
I didn't have time to be his cheerleader πŸ™„

It's not in your head. You need to be your own Doctor . I changed Primary, Rhuematologist , Dermatologist until I found what I needed .


Sending love hugs kisses and better days!

Mar 14, 2017 12:42 PM

I always believe it's all in my head . And when I try to explain it makes no sense to people. I'm sorry you feel this way. . It is not just in your head. I believe you. These doctors needs to do more studies instead of being to quick to push you away.

Hang in there. Stay strong .And don't give up 😊

Mar 14, 2017 12:57 PM

Cougarlicious. I'm sorry to hear that your husband couldn't stand by your side and support you. It seems like everyone runs away because they don't understand or want to try to understand. That is my experience that's why I don't have many friends.

I am happy to hear you are being so strong for your kids and yourself. One thing I learned is you gotta take care of yourself before you can take care of anyone else.

Stay strong . 😊

Mar 14, 2017 3:52 PM

Good luck to you. You know I really think that when people have chronic pain or are in pain management that someone should set up seeing a counselor or a therapist. So many folks on this app have struggled with not being understood. They have family and friends shun them. It's a lot to deal with emotionally. I really feel bad for those of you out therethat don't have a good support system.

Mar 20, 2017 6:31 PM

We did the therapist thing with a psychiatrist that specialize in chronic pain and it was an amazing experience we both learned a ton and it made me feel like I could finally explain to everyone that no this is not all in my head

Ready to start relieving your pain?

Join Community