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Update: tired of tests, no answers, and appointments

Dec 01, 2016 4:21 PM

So I've been poked and examined for the past month. I've had several referals and follow up appointments and with every referal I just get more tests ordered. I'm getting very tired and reaching the end of my tolerance. I have not been diagnosed with EDS and only received a referal to a physical therapist who said they can't do anything for me. I've received a referal to a neuro about possible seizures and he just ordered a eeg which I now have to wait for the insurance to approve and then I won't see my neuro for another 2 months. Not till February. I'm so fustrated and tired. At least my OBGYN is almost done. I did all the tests and just have a follow up with her tomorrow. And in 2 weeks a follow up with my primary. I'm hoping I can approach the EDS thing with him again this appointment. He's pretty good and open so I hope he listens if I bring it up again. He just kinda dismissed me last time because I don't have velvety soft skin which he said eds patients have. But I hyperextend so much. And through alot of research I really feel like this is the answer. I'm just fustrated with the waiting.

Dec 01, 2016 7:52 PM

It's so frustrating to go through all those tests only to be told inconclusive or negative.

(((( gentle hugs ))))

Dec 01, 2016 11:31 PM

Hopefully they'll stop all the tests soon and give you a dx.
I'm sorry I have no words of wisdom for you but I am here and listening.
I standing next to you so you can lean on me to give yourself extra strength and I'm sending you { { { BIG GENTLE HEALING LOVING HUGS } } } and I hope you're having a pain easy day xx

Dec 02, 2016 2:13 AM

*big gentle hugs to you both*
Thank you. Mimikay and Sezzy. I mainly posted because I have been reaching the end of my will and spoons and just it's been hard to keep going on with this. So I just mainly wanted support and recharge and your supportive words and hugs have meant so much and helped so much. My husband has been with me through every appointment but it's still so hard. I go to the doctor and home and that's been the passed month. I don't have many irl friends the couple friends I do have don't have chronic illness so couldn't really understand. My pain today luckily had been minimal. I had a good pain day today. But this has helped so much thank you. I have another appointment tomorrow so I think I have more strength to go now.

Dec 02, 2016 5:16 AM

I'm soo glad you've had a good pain day, it makes all the difference on your outlook for that day and means you can cope better with normal stuff you need to do....make sure you don't push yourself too much tho you don't want to end up having to spend the next 2-3 days trying to recover.

That's why we're here, to listen and offer support and if possible give a little advice and to celebrate your joyous times.

Unfortunately it is very hard for "normals" to understand even when they read the spoon theory and the letter to normals, to be honest I'm glad they don't....Altho I wouldn't mind some in the medical profession to have some and go thro people telling them it's in there head and so forth!!! Maybe then they might have some empathy and be more willing to help.

I hope your appointment tomorrow will bring you closer to a diagnosis....you never know they may actually be able to give a diagnosis so I'll keep you in my prayers and send you a few more spoons to help you thro the day xx

Dec 02, 2016 5:45 AM

How frustrating for you ... Fingers crossed they can figure it out.

Hoping that you are able to recharge with all this interaction and your increasing frustration... Sounds like a lot in such a short time. Be gentle and kind to yourself and make sure you decompress ...

I'm glad you have support at your appointments.

Hang in there and I'm sending you quiet soft spoon to hold onto.

Dec 03, 2016 4:36 AM

Thank you for all the support here. It really helped me get through my appointment today. And thank you foggurl for reminding me to take time for myself. Because I often forget to. It's almost the last thing on my mind till I'm reminded to. It's kinda like a deer in head lights I just sit in my pain until someone is like hey watch a movie or stay in bed or eat or take a pain pill....then I snap out of it and I'm like...oh ya that exists and helps doesn't it!?
So thank you and thank you for the spoons.
So my appointment went as well as it could be. My tests came back bad. My ultra sound was normal which is good. It means my PCOS aren't that physically bad but my hormones are bad. So they are gonna start me on metformin and hope it helps. I have a follow up in 2 months so see how it's doing.
Unfortunately before I start the medication I have to get blood drawn for a pregnancy test because I can't take it if I'm pregnant but I know I'm not and I'm tired of having my blood drawn. I hate needles.
And I'm still waiting for the insurance to approve the eeg for my seizures. But every time I feel tired and fustrated I reread your messages and it helps a bit. So thank you again.

Dec 03, 2016 5:53 AM

Hugs ... Hate blood work too. Hope the medication helps.
I had a social worker write out the things I can do to make me feel better and use it as a reminder when I'm in the middle of a flare.
Sounds like you could use the reminder list as well.
Take care of yourself!

Dec 03, 2016 9:24 AM

Sorry you're going through it. Hang in there. Don't give up. It me 2.5 years of actively pursuing many Doctors/Specialists to finally get a diagnosis. I have lupus.

Dec 03, 2016 4:46 PM

Foggurl it's good to know I'm not the only one who really hates blood work and yes that sounds like a great idea I could use that list. I'll probably do that tonight. Thank you! Oh and I too hope the new med will help.
@gibber wow 2.5 years!? That sounds like a long road and your very strong for going through that. I don't think I could handle that. It makes me feel better about the few months with all this doctor madness. So thank you and I won't give up.

Dec 03, 2016 5:16 PM

I can't say i understand your pain but just went through my own battles. I had been diagnosed with fibromyalgia and DDD for years now. Well a few months ago my lower back started hurting real bad again so i just assumed it was my old herniated disk acting up. Saw two neurosurgeons. First one literally gave me no answer, just said he can't help. Second one said i need to refer you to a neurologist but wouldn't say why. Well long story short. After a million tests and a long wait i haves now been diagnosed with MS. talk about a shock. All these years i thought i had fibro only to find out its been MS all along and just no one looked for it.

Dec 03, 2016 7:23 PM

Wow that must have been a shock Happy. Yikes!

Dec 05, 2016 8:58 PM

@happytoseethesunrise
Wow. That sounds like a long journey. I'm glad they finally found the real problem but sorry it took so long and u lived with the wrong diagnosis for so long.

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