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Desperate for Advice
I hope this message doesn’t come across as super negative or pessimistic, I am usually a very happy positive person. However, I am at a loss and feeling like I’m losing myself and this is basically my cry for help to anyone who may be able to provide me with some sort of guidance.
After spending thousands and thousands of dollars trying to figure out answers and how to get some relief for an endless list health issues as well as trying to figure out a diagnosis, I brought up genetic testing to my primary to at least hopefully find an anxiety/depression medication that would work because I feel that I’ve tried everything and it either doesn’t work, or I have major side effects. She had basically told me I’d have to go through an outside third party because she wouldn’t know how to read my results. I felt extremely frustrated because I had learned about genetic testing from Mayo’s website and I just want to feel okay again.
My personal experience over the last several years feels like I’ve just been pushed to the side and haven’t gotten any help or answers. I feel like my appointments are me trying to convince doctor that something isn’t right, or I’m diagnosing myself and they agree without any further questions/testing. When I do have testing/imaging done, usually there is some sort of abnormality but it’s just below the criteria to be a concern. I KNOW something is wrong but I can’t afford to continue to go to the doctor, not be heard, or get any answers to my concerns. I feel so incredibly defeated and have spent numerous hours searching the internet trying to find answers. I’m getting emotional just typing this. If anyone has any advice or recommendations I would truly truly appreciate it more than you know.
Health concerns-
•SEVERE Raynaud's (diagnosed myself, doctor didn’t do further testing. Started 2 years ago but more severe in the last year)
•protruding veins- more specifically after Raynaud’s episodes
•Severe anxiety/depression
•Occasional lump in neck near my esophagus that has a popping sensation when I swallow (had imaging done, showed a lump but “size isn’t concerning yet”).
•ADHD
•painful abnormal periods my whole life. Had imaging done and there showed some issues with my ovaries and something to do with lining somewhere (again, no phone call to explain the imaging/results to me and no diagnosis)
•major brain fog/memory loss
•rigid brittle nails, sometimes peeling
•constant peeling lips, also occasional angular colitis
•constant craving for salt
•stretch marks even when my body weight isn’t fluctuating- I’m 31 and my weight stays about the same
•thin stretchy skin
•terrible scar healing
•very flexible limbs, fingers, toes- my friends and family constantly make comments to me about my flexible hands or the way abnormal ways I sit because it feels comfortable to me (this sounds weird, but it’s hard to explain).
•joints pop out of place frequently
•purple/blue lips (could be Raynaud’s)
•swelling and flushing of the nose
•lower back and abdominal pain pretty much constantly
•abdominal bloat
Thank you for taking the time to read ♥️
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Hope and pray you get answers. Soo hard going it alone. As much as we can I am sure you will find support…welcome
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1 ReactionMy heart goes out to you. I have experienced the exact, identical thing with regard to being pushed aside by the medical community. Many tests, sometimes no review of results or "nothing we can do". You leave feeling more hopeless, frustrated, and depressed. Know this well. I have lupus and Sjogrens and my Sjogrens is out of control and there is NO meds for it so it can cause immense agony anywhere and in any way it wants. 😡 If you want anyone to personally vent to, I'm here for you. I truly understand and relate to your suffering and desperation. Let me know. God Bless you. May His healing touch bring you relief.
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9 ReactionsHave you had any testing for r/a , lupus or Sjögren’s syndrome?
Hope you feel better. I hope you see the truth in there are many caring people in this space who truly care and want you to not feel you are not going it alone. Praying for that to be a reality for all of us here. Peace and blessings
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3 Reactions@curiousgirl2468 will get more help if she sees your post. I immediately thought of ehlers danlos because I had many of these symptoms but many doctors don't know much about diagnosing it! EDS, as you know, is on a spectrum. These kinds of syndromes often take years to develop patterns. And how frustrating to the person who feels ill. Your daughter is lucky to have a parent who is supportive.
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1 ReactionMy heart goes out to you, as I have similar responses from doctors who work for large corporations and don’t have time or energy to help with our cries for help with strange unusual concerns.
Research a Dr. Forest Tennant. He is an expert on EDS. He is on YouTube and has a website, has written books. God bless.
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1 ReactionHas your Primary Care Doctor tested you for auto-immune disorder?Are you under the care of a Rheumatologist?
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1 ReactionAutoimmune diseases can be so hard to diagnose. Like you, I had various symptoms that didn't seem to be connected and no one was able to solve the puzzle for over 25 years. By the end of 2018, I thought I was going mad, but finally one doctor recognized that a Connective Tissue Disease would explain the back and joint pain, recurrent eye issues, shortness of breath, and severe fatigue and referred me to a rheumatologist. That was the point where everything changed. You didn't mention that you'd seen a rheumatologist, so if you haven't, that's where I would start. They'll evaluate you, order imaging, look for specific biomarkers, order tissue biopsies if necessary, and run labs that look for autoantibodies that can clue them in to what's going on. It can take time to finally arrive at a diagnosis, but many of us have fought a similar battle and you are definitely not alone.
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3 ReactionsI was at a crossroads once and knew the medical community was not going to help me after 3 endoscopies and prescribing the same medication over and over. After the 3rd endoscopy, the GI doc told me to never take that med again. It was ruining my digestive tract. So I said to myself where does that leave me? I had been following a young man who had a 10 year journey in ill health and could not find anyone that could find help him find what was wrong. He took matters into his own hands and researched other types of medicine - functional medicine, osteopathy, etc. He ended becoming certified in Functional Medicine, opened up a center called the California Center for Functional Medicine. I went there and found help. The doc there listened to the symptoms I shared, the med I was on and results of last endoscopy. She ran tests and then treated me based on the CAUSES of my symptoms not the SYMTOMS - big difference! I eventually found a functional medicine doctor closer to my city and she did the same. Functional medicine is a game changer. You can find one based on city and state at the website ifm.org - it's worth a try! Best to you - I understand and sympathize with your frustrations and just wanting relief!
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2 ReactionsPost septic shock
Nonalcoholic cirrhosis ptsd insomnia night terrors mdd gad lethargic hair loss atrophied right kidney chronic kidney disease I am 8 years out im getting worse. This started in 2017. I am right at 8 years. I can't find a medical professional that understands the need for help.
I have also been denied disability
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