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Could my out of control fibromyalgia be something else?

I have an appointment with my family doctor on Thursday and, among other things, I will be asking him to rule out conditions other than my fibromyalgia that may have been making my health worse over the last year and a half.

I've had fibro for over 30 years and have, mostly, been able to manage it. Over the last several years it has become much worse and I haven't been able to work in over a year. The main problematic symptom is extreme fatigue, but I've had a significant increase in tension headaches and migraines, and pain is triggered by much less exertion than ever before (especially in my back and hips). My thirst has become nearly unquenchable, with the resultant increased frequency of need at the other end of things. I've also had an increase in nausea, dizziness, and vertigo.

I have a pain specialist who is evaluating me for degenerative disc disease as he suspects that may be at the root of my back pain, headaches, and migraines.

I also plan to ask my physician to evaluate me for ME/CFS and, hopefully, send me for sleep studies.

I am also going to ask to be evaluated for POTS as tracking my own heart rate and blood pressure indicates this might be a problem. (No one more surprised than me as I've had multiple cardiac studies over my life that never showed any problems. I only started tracking it to eliminate the possibility from my own mind!).

I've repeatedly had my thyroid tested throughout my adult life, with no abnormalities. The most recent test was two years ago when my fatigue started increasing.

I did have a mild vitamin D deficiency, which has since been corrected. No other deficiencies were found at that time.

Past tests have also repeatedly eliminated lupus and other inflammatory rheumatoid conditions. I show no inflammatory markers of any kind. I think I've had the basic Lyme disease screening, but not the more sensitive tests that need to be sent to labs in the States for evaluation.

Anyone have any suggestions of other conditions I should ask to be checked?? I am so frustrated trying to manage my condition that I really want to make sure nothing else is going on.

#Fibromyalgia #Comorbidities

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Does anyone feel their bucket being filled when doing art? Or when looking at art?

You may recognize this from my profile pic...understandably so because it is a portion of this art piece which is one of my originals. I find that playing with the colors and putting detail and meaning into my pieces helps fill my bucket. Especially when I am then able to hang it up on my wall!

Is anyone else affected by art in this way? Please share your experience if you are comfortable! You are also welcome to share your photos!

#DistractMe #Comorbidities #mentalillnesses #DiabetesType1 #ArtTherapy


Does anyone here have comorbid Generalized Anxiety Disorder and Panic?

I have a question specifically for someone who has comorbid GAD and Panic, especially if you have it to a severity requiring daily medication out of necessity. If that is you, can you please comment? I would like to ask you in a PM if you're willing to do that. I am reluctant to post the question here because of the variety of conditions people on here have and in turn the variety of responses I risk getting. Thanks!
#Comorbidities #GeneralizedAnxietyDisorder #PanicDisorder


Found a book on Mast Cell activation disorders Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome

Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome

There have been a lot of questions popping up on this disorder (I'm actually being tested right now) thought I'd share . I haven't read it, but might get it depending on testing.
This book includes: 1) an in-depth overview of mast cell activation disease, with a focus on mast cell activation syndrome (MCAS); 2) a patient story describing life with MCAS; 3) a detailed literature review and current hypotheses for disease origins; 4) a practical guide of clinical considerations for diagnosis; 5) a chapter devoted to comorbid conditions, including Ehlers-Danlos syndrome, POTS, Lyme disease and much more; 6) several chapters devoted to mainstream and natural treatment options, dietary considerations, and strategies for holistic healing; 7) content from dozens of interviews with prominent MCAS experts, including specialists in allergy/immunology, hematology, functional medicine, naturopathy, psychology, nutrition, gastroenterology, physical therapy, clinical research, and more! Whether a patient, medical practitioner, or family member/friend, this book empowers readers and provides patients with concrete steps to move forward in the diagnosis and comprehensive treatment of mast cell activation syndrome.
#MastCellActivationDisorder #mcads #Comorbidities
#Allergies #Undiagnosed


How do you Manage you complex health issues?

Feeling overwhelmed as usual with my complex health issues, not feeling like I am utilizing all I can being disabled. I need help to figure this life out. Keeping track of things. Every state is different. I want out of my limited thinking because even though I can't do things the way I used to or even some of my favorites I've had to put to the side. Limiting things to save energy. There's still things I can do to be useful or make money. Being a single mom and my son is getting diagnosed with some of my same things as well. The struggle is real. I want to be self sufficient and not feel like a burden or loser to family. I want to be a millionaire with health insurance and my own boss. #HypermobileTypeEDS #LivingWithPOTS #Fibromyaliga #Pain #imsomnia #Comorbidities #help #hawaii


Others Angry when I Display Symptoms

I was just wondering if anyone else has experienced something similar to this. Whenever I have a panic attack my mom responds with anger. She has literally said, “Really, this AGAIN?” It’s like making me feel guilty for something I can’t control and in response I do any unhealthy thing I can do in order to mask or deaden my emotions around her. I know she cares about me... I just don’t understand where that kind of reaction is coming from and I feel like I’m just this horrible person because of it. #PanicDisorder #SocialAnxiety #Comorbidities


When dealing with a number of conditions/comorbidities, do you find one doctor or many? If the latter, how to get them all to communicate? Thoughts?

I am the parent of a teen suffering from a number of conditions the initial of which was/is NDPH. I believe we're at a crossroad in her care and am thinking about how to proceed. Right now, we have a number of doctors - none that I'm thrilled about for various reasons and none are necessarily specialists in her specific disorder(s). Based on your experience, would you recommend seeing specialists for her individual conditions, going to an inpatient program to try to deal with all conditions holistically, or some other model?



How to prepare?

This is for folks with EDS, hyper mobility syndrome, or similar conditions.

I have my appointment with my PCP on Monday (11/16) morning. I’ve been keeping a log of my pain and numbness as suggested by them for my back pain. I think I’m going to transfer it to my computer and print it out so it can go in my chart. Since I started the log the symptoms have expanded from primarily back pain to whole body pain and extremity numbness. I also have weakness and hyper mobility in multiple joints that’s causing problems (falls or near falls, dropping stuff, etc.)

I found out yesterday (11/9) that my mom lied to me about not having any hyper mobility as an adult. I told her I was concerned about mine after my wrist gave out at work causing me to drop a 30lb box into my chest and she retorted with “I deal with it everyday you just have to get over it.”

It’s already been documented that she doesn’t have any problems so they “ruled out” EDS but now this comes about. How do I correct this info without looking like I’m lying? I just want answers and tools to cope. I know there isn’t a cure, but having a diagnosis would make me feel valid in my struggle. I would be able to ignore my mom when she says I’m imagining everything.

I go to PT, a chiropractor, use an ankle brace, limit strenuous activity (most of the time), ordered a wrist brace with thumb spica (its enroute last I checked), document the more troublesome symptoms (it would be pages long if I documented everything), attempting to eliminate gluten (not so successful so far).

What else can I do to prove what I’m dealing with is real? A diagnosis would help if/when I decide to apply for disability again because sadly it would be one more thing to add to the list of problems.

I guess this kinda turned into a rant/vent, so if you made it this far thank you! My question still stands though, what else can I do to prepare for this long awaited appointment?

#EhlersDanlosSyndrome (?) #Undiagnosed #Hypermobility #appointment #Prepare #Anxiety #Depression #Comorbidities