Raynauds Phenomenon

For years I have lived with a “fibromyalgia” diagnosis and numerous strange symptoms that come and go. Recently things have escalated and changed and bloodwork revealed the probability of autoimmune disease; my PCP is guessing lupus or sjogrens. For all these years I have felt and seen the disbelief of people close to me and them thinking I’m just being “dramatic” or anxious. My ex husband went so far as to tell me to not tell anyone I have fibromyalgia because it’s embarrassing. When I recently received the lab results that I am not in fact “being dramatic “, I felt like throwing up my middle finger to everyone who turned their back and brushed me off. My mother even told me that she thought I was just having anxiety issues. My psychiatry nurse pointed out it is like I am validated now, even though having an autoimmune illness is definitely not something anyone wants. I feel like after all these years I am not just being a whiny butt. Now will come the hard part of waiting to see a specialist, it’s months to get in and that part sucks. I don’t have a lot of people in my circle and this does feel isolating so I’m here to try and be proactive, try and keep anxiety about the unknown and off the wall symptoms down and connect with others who are in the same boat. #autoimmune #ADHD #Undiagnosed #whatswrongwithme
#SjogrensSyndrome #SystemicLupusErythematosus #RaynaudsPhenomenon

Mentally checked out.
Hardly keeping up.
Running myself into the ground day in day out.
These last two years have been tough.
Trying not being on autopilot all the time .
Not feeling like I’m living, just going through the motions .
Am I happy ? Am I not ?
#MixedConnectiveTissueDiseaseMCTD #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction

Feeling forgotten by friends and loved ones. Some new stepping up to the plate.

Life is so weird like that. We know we will pass through chapters and stages throughout life some coming and some going .

Just can’t wrap my head around just poof “bye” as soon as i am not readily available at everyone’s request.

I still overly push myself which I know is at times doing more harm than good for my body but I need to push for the sanity of my mind.

Even before i became unexpectedly ill I’ve felt like people just would use me and toss me when i was no longer of use. Now I just feel like this happens even quicker .

Just scattered thoughts . Has anyone else noticed how people act around them has changed ?

#MentalHealth #Depression #AutonomicDysfunction #POTS #RaynaudsPhenomenon #RheumatoidArthritis #MixedConnectiveTissueDiseaseMCTD

Needless to say nothings really changed for the better . Not necessarily the worst either.

I started embrel for my arthritis and I’m really not sure how I feel about it but I really don’t want to get back on prednisone . Equally aren’t the greatest. “Do the pros out way the cons . “

Therapy has been going good it’s kinda nice just to be able to talk to someone who’s not only studied it but lived with trauma as well and acts on her own suggestions for herself. Example: breathing exercises, does it on perineal tone / with clients to help / and recommends it .

Personal life feel like a rock stuck on the side of a river . Watching as life goes by .

Medical sometime I feel stronger most the time I feel weaker . Some days are better than others but over all auto pilot and suck. Between one condition flaring up another etc etc .

I’m having a hard time taking my medicine . It’s just like my brain is like “NO”. Squirrel and I get side tracked and don’t remember to do it . Even logging medical symptoms is tedious and just don’t have the will.

I’ve missed you old friends
#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #Depression #Anxiety #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis

Holà, I'm Sara, 26 years old, living in Paris with quite a well-stocked medical résumé. Between Ehlers-Danlos syndrome, a pseudo Raynaud's syndrome, Arnold's neuralgia, and maybe a bit of arthritis thrown in for good measure, let's just say my body loves complexity. Oh, and I'm still waiting on a diagnosis for a nerve demyelinating disease—if I ever manage to get a full diagnosis, I might as well write a medical textbook!
#MightyTogether #EhlersDanlosSyndrome #DemyelinatingNeuropathies #RaynaudsPhenomenon #Arthritis

Hi - I lost my thyroid functionality due to toxic chemical exposure while serving in the Army. I don't regret my time in the military at all, but it is what it is.

It seems the thyroid was a doorway, and without it being shut anymore, many unwelcome visitors came in and set up their new home. Besides the thyroiditis, I now have pernicious anemia, Raynaud's syndrome, scleroderma, and the newest and most nefarious invader, Stiffperson Syndrome. I never would have tested for it without Céline Dion's announcement, and I am grateful for her courage every day.

Stiffperson, however, has made it very difficult to hold down a steady job. It has made the cold winters here painful to my muscles. It has changed my idea of my future and my plans. I took my health seriously and used to feel I could do anything. Now I feel limited and that has taken a difficult mental toll on me.

I live in the northern part of the state of Utah, in the US. I appreciate the advice here and am looking forward to learning from the experience from people here. I want to thank you in advance for your help and your insights.#StiffPersonSyndrome #PerniciousAnemia #Scleroderma #RaynaudsPhenomenon #thyroiditis

I did a thing. I did some research over the last couple weeks on psychologist in my local area.

As you can tell I have been struggling mentally and am a bubble of coffee about to over flow my mug. Yes I said coffee because that is about the only thing that is keeping me up right at the moment .

20 -30 minutes of deep sleep a night and little rem is not doing me any favors.

I found one I almost cancelled at the last second but took a gamble and called her up she reminded me so much of my step mama and took me back to days or nights sitting on the kitchen floor as I talked to her while she did her hair or what not. She got me in the next day.

I advocate for mental health and getting the correct treatment weather medication or talking to someone. Or both. I am not so great and following my own words when it comes to self help.

I’m better at taking care of others than I am at taking care of myself .

My middle school counselor was someone I truly opened up too. Saw him for a couple years and then he passed from cancel. Sense then I have not been able to get over the hurdle of seeing someone new.

Well I took the first step and I think I’m going go take another. Next appointment in two weeks and giving EMDR a try. This should be interesting. I came out of the womb stressed

#MixedConnectiveTissueDiseaseMCTD #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction #Anxiety #ChronicFatigue #Depression

Hi, my name is Ms_Lee. I'm here because I have multiple life changes occurring (moving to a Berkeley at age 65, coming out of the closet, entire family died)only to havemy body collapse with multiple diseases and injuries. This year's line up is 2 total hip replacements and maybe one arm cubital & carpal surgery re-surgery. I never would have moved into a 'home' if I knew I was going to be incapable of maintaining it and myself. Makes it incredibly difficult to find energy to make new friends in this community. I feel overwhelmed. #Arthritis #longcovid #MightyTogether #Anxiety #Depression #Migraine
#longcovid #OCD #Grief #RaynaudsPhenomenon #Scoliosis #Osteoporosis

I just told my daughter L. that I would prefer to do it tomorrow or Wednesday. So that I can make sure I have the energy to enjoy the time together vs how I feel exhausted today after a long day.

It really wasn’t bad or anything just one of those Mondays at work nothing really great and nothing really bad. Just was.

Back to L. It was so odd for me to say that. I normally am not good at that bouncy especially when it comes to kids or elderly. I think it’s just how I was raised . I was always the care giver. It felt empowering though. She wasn’t thrilled of course what 16 year old would be for saying no to going to a “junk store” to “look”. Aka me driving all over the place spending energy money and time. I enjoy the moments and I know they won’t always be there . Just interesting how when they get older boundaries can change and adapt. Also is weird to me because how I am with L. Is so different than I am with B. (Oldest daughter) . Such different personalities and to the extreme opposite but not .

All in all weird but good feeling for holding a boundary . Even if it was with family .

#MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #AutonomicDysfunction #RheumatoidArthritis #MentalHealth #Anxiety

Feeling sticky and stuck.
Seeing the same things all the regular ins and outs of my days.
Hearing the constant negativity around work.
Home is not much better. Not really anyone’s fault there because it’s constant bombarding from outside source. Mainly one in particular. Besides my point.

Normally I can handle the madness that is presented to me and I might add pretty calmly too.
Medication changes, dosages up and down. Emotional. Head doesn’t feel right. Feeling like I am stuck were I am. I take a step forward and then snap right back to we’re I was mentally. Constant tug a war.

Not a lot actually makes my soul happy anymore . More of auto pilot and going through the emotions. Existing surviving . Not living.

I know no one really imagines the negative or bad stuff happening nor do we want it to happen. That’s life. Ohhh is the universe really testing me.

Breathe in . Breathe out. Breathe in. Let all the BS out.

Stop absorbing . No more room. You don’t have to fix everything.

Don’t even feel like I am in my own body or skin. Just the remaining essence in me that still exists.

#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #MentalHealth #ChronicFatigue #Depression #Anxiety