Connect
At a loss, multiple consultations still no answer...any idea?
In the last year my health has rapidly declined, I've recently had a blood test which was normal except for my folate which was low. My Dr conducted an examination, but was unable to properly diagnose me.
Any idea what it may be from these symptoms:
*Pulsating headache, difficulty focusing.
*Weak eyes where they feel droopy along with being dry and painful.
*Dry and sore mouth.
*cheek and jaw pain.
*Changes in pigmentation, face appears gaunt.
*Back pain.
*Odd tingling sensation present in hands and feet.
*cold hands along with an odd rash present on hands and knuckles, which is a deep purple.
I know something isn't right, yet I'm unable to obtain the answers I need. I've added some images before the changes occurred to now so that you can get a context into what's occurred. Any insight will be greatly appreciated, many thanks.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.
-
Like -
Helpful -
Hug
1 Reactioni'm very relieved to hear your doctors haven't been pushing meds because that in itself can be the cause of many "extras". And kudos to you for not wanting to be on them.. Your doctor's holistic approach is a smart one although having been there, I understand completely how sucky that feels when you have discomforts and symptoms and just want help.
As hard as this is to hear...once you navigate testing and results...it may come down to chronic conditions and understanding how to gain acceptance and learn how to manage for a better path forward. Central Sensitization Syndrome really seems to line up with all you describe.
The confusion, anxiety and frustration is actually fueling your fire. What do you do to calm yourself?
In pain rehab, I learned the 5 P's:
Pause
Process
Perspective
Patience
Plan
-
Like -
Helpful -
Hug
3 Reactions100% true, you came to right place. I'm sorry to hear you experience pain through your body. I do too, and it wasn't until I Dr. hopped, had extensive testing, took multiple drugs, and drove myself a little crazy that I realized what I was living with were chronic conditions. This in turn messed with my psychological state and brought depression, anxiety, etc... which entices symptoms and round and round we go. All of this became overwhelming until I learned how to manage, accept and plan my course of action. Putting yourself in control instead of Drs is empowering.
How are you currently managing inflammation? Are you eating a healthy diet to help reduce inflammation? How are you managing your mental state? Are you giving yourself grace?
Hello! This really is an amazing community for people who have other than the most routine symptoms!
For a long time, I, too have been going the route of being told "you're fine, you have anxiety, you need to do X, blah blah blah". This while knowing something was wrong. I, too, have an implanted loop recorder. And I have begun to feel kind of crazy when I see this list!
Turned out to be several things, long undiagnosed celiac disease, pernicious anemia, UCTD, AFib, labile hypertension, neuropathy, cutaneous Lupus, on and on, most recently Pure vasovagal response as the result of a Tilt Table Test.
That is a dysautonomia!
There's a drug to raise blood pressure! I am not starting it unless things get way worse! Too many pills already! The side effects of one creates the" need" for another ad nauseam.
(Note: I am investigating Hawthorn berry for AFib, my sister told me about it.)
And the rest of it? The symptoms?
For now, I am going to live with it. I am blessed not to have severe problems, just a lot of them, and, at the moment, grateful to have a diagnosis of dysautonomia explaining SO much?
I wish you all the best health-wise and that you find peace!
-
Like -
Helpful -
Hug
2 ReactionsWhen am in pain am so depressed and fed of of all the pains, I try to change my diet but it’s a struggle when u love the things that are bad for you like sweets but am making progress with changing the way I eat what I eat and drink. I take pain killers when the pain is getting too much for me but I try to bear it most times because I don’t want to get too dependent on pain killers.
-
Like -
Helpful -
Hug
1 ReactionWill you consider applying to Mayo's Pain Rehab Center?
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691You can apply through this link.
@yellowdoggirl Hi! I'm so glad you enjoy the Connect community. We're here to help, support, and encourage. Thank you for sharing your journey.
I'm sorry for your health struggles but happy you have a diagnosis and are grateful.
Wishing you a positive path forward of managing your symptoms, and making the most of what you do have.
I saw my gastro doctor today and she agrees with all my multitude of symptoms for almost 2 years now November 2019 that she agrees with my cardiologist from 2 years ago and my primary care doctor that all my symptoms are pointing to an autonomic nervous system malfunction. So my family doctor's going to try to get me referred and my insurance to approve it to go to the Mayo clinic in Jacksonville since we hear they are pretty up on autonomic nervous system issues. My question is if autonomic nervous system issues only pertain to dysautonomia And I reviewed the 15 categories of dysautonomia yet I don't see how I can fit into any one of those 15 categories unless you can have autonomic nervous system problems without ever having to be put into one of those 15 categories.
This is great news! I'll keep my fingers crossed. Definitely Dr. referrals to Mayo Clinic are helpful. Keep us posted.
-
Like -
Helpful -
Hug
1 ReactionI am back in bed so sick. Feel like my body is shutting down with possible autonomic nervous system failure. BCBS is causing my downfall.