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Wish I knew my diagnosis

Dec 05, 2016 11:01 AM

I got up this morning and took my eldest son to the bus stop. Got home and went back to bed. An hour later, I get up to help my youngest son get ready for school. Getting out of the car after dropping him off at school, I notice I'm weak and exhausted. We have 6 or 7 steps to come up onto our front porch. I felt like I was using all the strength I had to lift my legs up each step. I had to go feed the chickens and goats and I had to just keep pushing myself to finish up bc every step made me want to fall back into my bed. I am in bed right now. I have let my co-worker know that I may not be in today. I'm supposed to go in at 3pm. It's a 75-90 minute drive depending on traffic bc I live in the mountains. My hands and feet are beginning to hurt again but it's not the Raynauds bc I'm plenty warm under a thick blanket. Heat is really causing an intolerance with me though. My neck and back are stiff and aching as usual and I have a mild headache. And the back of my neck has been so fatigued that it feels difficult to make it hold my head up!! I wish I knew what my diagnosis was so that this stuff would make sense. I'm going to sleep. Hopefully I wake up not feeling like this. Can't afford to miss work with Christmas almost here.

Dec 05, 2016 1:17 PM

Have you been tested for anything like ms?

Dec 05, 2016 1:35 PM

I had a CT scan of my head when I was having non-stop Migraines in January of 2013. It was clear of lesions.

Dec 05, 2016 1:42 PM

I'm so sorry you're going thro this and I wish I had a magic wand to make things better but all I can suggest is to keep going back to your doctor, keep documenting all your symptoms and rest when you can. I'm sorry I can't help you with any more practical suggestions.
You could try maybe a hot bath with 1-2 cups of Epsom bath salts and soak in it for at least 20 minutes, use lavender essential oil in an oil burner or an electric diffuser or even a couple of drop across your pillow to help you relax so you get more restful sleep.
I hope your day gets better and less painful for you xx

Dec 05, 2016 2:19 PM

Thank you Sezzy. I really appreciate your kind words :)

Dec 05, 2016 3:26 PM

Sorry you're going through it. Don't give up looking for answers. It's usually a long process unfortunately. Have you had any blood work done or an MRI to look for autoimmune disease? Definitely document everything because bloodwork alone is not definitive. If you have any physical symptoms like swelling or rashes take pictures of it. It helps with getting Dr.'s to believe you.

Dec 05, 2016 3:49 PM

Have you talked to a doctor about chronic fatigue syndrome and fibromyalgia ? They might be worth exploring. Hope you feel better soon 😌

Dec 05, 2016 7:44 PM

Gibber, Painfree - I have an appointment with rheumatology on Friday. I have made a list of all of my symptoms and I will make sure to bring them all to the doctors attention. I've had a lot of blood work done. No MRI. I did have a CT scan a few years ago but I was only having Migraines at that time.

Dec 05, 2016 10:32 PM

MeLiz if you can it might be worth either bringing your phone and showing them the app with all your pain logs so far or printing out the chart from this app....when I brought my phone into my GP and Pain Clinic Nurse they loved how the chart on my phone showed my pain, anxiety and mood levels and how they're all linked and when I went to my local Citizens Advice office they actually printed it all out to send in with my appeal for ESA benefit (disability benefit here in England).
The more information you can bring with you the better (well that's what I've found anyway).
Also write down a list of questions you want to know....my memory is soo bad that when I go to the doctors, I forget what I wanted to ask so now I write down everything , what non-medical therapies I've tried with what's worked and what's not and if I'm still doing them or if I've had to stop doing them....finances is a major problem with some alternative therapies.
I hope they'll be able to at least answer some of your questions, unfortunately, it's going to be a long process to find a dx.

Dec 05, 2016 10:35 PM

All the very best. I hope you're appointment goes well and you have a compassionate Dr.

Dec 06, 2016 12:20 AM

I have had a lot of the same symptoms over a year now. I have tension headaches, degenerative disc disease in my neck and upper back, myofascial pain syndrome (chronic muscle pain), chronic neck pain & scoliosis.

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