Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

undiagnosed (invisible illness)

Oct 25, 2016 1:53 PM

Fot two years I have dealt with trigeminal neuralgia, and a slew of other symptoms. Numbness and tingling, muscle tenderness, muscle spasms, weakness and fatigue.

Anyone went forever without a diagnosis? How did you cope?

Oct 25, 2016 2:12 PM

I went for long time. I'm 45. I actively pursued answers for 2.5 years and went through 3 specialists, a pain clinic, and my GP numerous times before I finally got sent to an Internist when Raynaud's showed in front of my GP. The Internist diagnosed me with lupus within 5 mins. Saying nothing I was told was normal is. Not only that but he thinks I've had lupus since I was diagnosed with Epilepsy at 13 years old. He also thinks it's why I lost my bladder to IC at 28. It was joint pain that showed up, got bad and spread so fast, swollen taste buds that were excruciating, and random infections that wouldn't clear up, some with fevers that sent me on the fight for answers. Don't give up finding an answer if you know something is wrong. Docs aren't very educated in this stuff. I had 2 Rheumies tell me nothing was wrong. They should have known. They're trained in this.One was so rough with me he had me crying with the pain he caused me and not only did he not give a shit (sorry) he still told me I'm fine. Moving me the way he did shouldn't have hurt if I was fine. I was anything but fine.

Oct 25, 2016 2:28 PM

Thanks so much for sharing your story. It helps to know someone understands. I keep wondering what's going on but no one is really giving any answers I've been through several doctors.

Oct 25, 2016 2:33 PM

I'm sorry you're going through it. It really does suck. What have they tested you for so far?

Oct 25, 2016 2:52 PM

Sarcoidosis
Lupus
Multiple Sclerosis
Thyroid Disease
Vitamin B Deficiency

They have continued on MS track but now are waiting for mite significant issues to surface. I saw an MS doc who says I'm very symptomatic but not enough clinical evidence for him to diagnose me. Crazy thing is he says he'd recommend me to see other ms doctors... Says he thinks I should go out of state but I don't have that type off money you know.

Oct 25, 2016 3:36 PM

I hate to say it. But ask for bloodwork every few months. I was ANA positive 3x but they decided it was false it wasn't. All my other bloodwork came out normal and as far as I know still is. Blood work is not definitive in these situations. It shows up negative and actually can be positive and vise versa. They have to go by symptoms too such as joint pain. Also you can show up negative often and then one day suddenly your blood work shows up positive. Sounds like you need a good doc who looks/thinks outside the box. Have you considered asking to see an Internist? Do you have one in your area? I asked to see one 8 months prior to my diagnosis. My doc actually told me no that he wouldn't be interested in seeing me. When my fingers turned blue in front of him same doc offered to send me and the Internist is who diagnosed me and us over seeing my care now. Take pictures of anything you can. Like if you get swelling, or rashes, dry skin patches. Often docs need to see to believe which sucks but is true. I'm in Canada so things are different here with costs.

Oct 25, 2016 7:35 PM

Hello. I'm new here but relate to what you're going through. I was labeled with the MS diagnosis for several years when an MS specialist in Seattle, Washington said it wasn't due to not enough scan evidence. I've continued to decline and am on the verge of giving up on ever getting any answers. So frustrating. I feel for you.

Oct 25, 2016 9:32 PM

I was 43 when I finally got my EDS type 3 diagnosis. I'm 45 now and have had to teach at least seven different doctors about it because they had never heard of it.

Oct 25, 2016 9:56 PM

I've had issues since childhood (I'm 25 now). The doc has complaints in her notes of fatigue as far back as 8 years old. She hasn't had any interest in figuring out what's wrong. She just brushes me off everytime I have a concern. I am currently in the process of looking for a new doctor. I have self diagnosed myself with fibro but it very well could be lupus or Lyme or one of these other diseases with similar symptoms. Because this started so young my main complaint has been fatigue. I didn't realize the pain wasn't normal. The fatigue was easier to see that others had way more energy than me. My mom always just used to write my pain off as being clumsy. Which I am but fibro also explains my balance and coordination problems. Anyways, you have to keep pushing forwards. It may take a long time but you have to be your own advocate. Many doctors seem to want you to fall into a neat little box and we don't so they want to brush us off.

Ready to start relieving your pain?

Join Community