Raynauds Phenomenon

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Tock Tick Tock

First and for most I had this whole spewl written out then my phone messed up and here we are trying this again. Here goes nothing.

This quote in the image rings the constant nag of the time watching it as it seems to drag by. My body as a pretty good internal clock down to a minute or two from the actual time. I always know the time but still look. The constant cycle spinning through my head as my brain never shuts off. Constantly thinking through a brain fog now, before it was just pure chaos. Not sure either is good. Making list mentally verbally sticking them thinking them when ever it can. Subconsciously consciously writing brain never shutting off. Of course it’s never what I actually need as far as information goes. Squirrel brain to say the least, completely sound though and am greatful for that even with the brain fog. I do wonder though is it worth it with all these side effects. Sitting questioning wondering am I doing it right . Is that what the doctor said . The thing a what ? Is that good or bad? Crud why can’t I remember. Some days are better than others. I’m present and in the moment, most the time.

I just want it to shut off sometimes. Not going to lie because I’m just trying to be raw and let what I’m thinking flow. I don’t like too, nor do I condone it but I have taken a little extra sleepy medicine to turn the switch off. No dreams . No terrors. No real movement. Pretty much zonked. It scares me though that I hit that point.

I question the amount my body goes on autopilot just out of pure routine and functionality . Medicine time. Time to pee. Did you take enough steps. Is that right or is that wrong. Oh wait we are only guessing because no one knows what’s up or down.

Then I stop. I breathe. I remember I am present. I am here. I am doing my best. May not be to the standards of ocd trauma brain of mine . I showed up. I did what I can at that moment. Be present. It is enough. #MentalHealth #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #ChronicFatigue #Depression #MixedConnectiveTissueDiseaseMCTD

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Extra Body to Spare ?! Anyone

Biggest struggle is wanting needing to do something and your trapped. Your supposed biggest asset (your body) is the one that is your biggest kriptonite. Fighting you.

How do you handle fighting yourself ?! Mentally. Physically. Spiritually Even.

People telling you “Google recommendation” just do this. Slow down. Good thing it will be over soon.

It won’t be though. This is something that was dropped out of thin air. No notice. Just one day a switch flipped and body was like “umm nope I’m broken now” .

Not every attempt will be successful to listen to your body needs. Some days will be easier than others. Same as it’s always easier said than done.

Probably a coping reaction. You doing okay ? How you feeling ? Need anything? My response “got any extra body parts lol” but hey I need to add humor and lightheartedness sometimes, even if it’s only for my sake.

#RaynaudsPhenomenon #MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RheumatoidArthritis #ChronicFatigue #Depression

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Mask Worn

Has anyone ever seen the health commercial. A woman goes throughout her day and she holds up a paper mask with a drawn on smile, while hiding behind the mask on the realness of what was going on with her. Felt like this was such a important commercial because it shows a true reality.

No matter what your diagnosis is I feel like this can be applied.

I know I am for sure pretty much have done it my whole life and almost feel like it’s gotten worse sense being diagnosed with a slew of diagnoses.

Anyone else ?

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

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Double Edged Sword

I think I am going to use this as a reflecting log on my feelings thought’s experiences struggles triumphs questions concerns.

When one day something works and the next day it makes it worse.

Something I have been struggling with is SLOWING DOWN. I do not know how to without literally going insane in my mind .

If you new the driven perfectionist seen not heard mother I had, it would probably make more sense.

That’s neither here nor there. I can’t do it, not that I don’t want to do it. Try try again till you succeed. I’ve taken baby steps here and there and listen to my body in the moment as much as I can.

Working is a love hate. I don’t mind the work I find it quite easy actually and it is primarily sitting down desk job 80/20 sometimes 90/10. Im just bored. Still have to drive in 30 min round trip. The pay cut was by 1/2. It kills me knowing I could probably easily go get a job in my pay realm of experience and knowledge. Issue my body.

I know me well enough. Im a sponge I absorb it all. Living vs … who knows if I push myself past the limits now…

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

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What is normal !?

The questioning and constant assumption of “well you look normal”.

Just because I look like I am in my 20’s yet am actually in my 30’s but internally feel like I’m in my 80’s. (Just an expression, mean no disrespect ) . If I feel internally like I do what will I feel like in a year, maybe two or longer.

Sense being diagnosed I just feel like my world has been turned upside down. Not just one diagnoses but multiple and still having 0 clear understanding of any of it and why ? How ? When ? What ? Where ? Etc

I am used to being everyone’s go to person the fixer. Now I just feel like a rock stuck in a river as everyone else keeps flowing on by with life.

How do you navigate the difficult question of but you look normal, you must be healthy. Trying to explain…

Having autoimmune diseases that aren’t physically always obvious can add to our taxing days already .

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

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Starting to realize more and more

Reflecting back on some previous post I shared.

Realizing my body internally can not keep up like my body used too. Feeling more and more pain the more I try to push through. Pushing through just leads me down a downhill slope of fatigue and pain that just gets worse and worse.

Scared on what will happen if I can’t keep up with the world. Will I be left behind. What is my purpose now.

Overall misserable …

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

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Fighting against a lot

Psoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstairs I stupidly tried to take them faster than I normally would so by the time I got upstairs I was really gasping for breath I grabbed his money and went back downstairs to my living room to find a £1.00 coin I went back to the front door my head started spinning my legs were giving way then crash I hid the cupboard door under our stairs the bang give me a startle I reached my front door handle and pulled my self up the window cleaner was beside himself I give him his money then went to my living room really really struggling to get my breath a tight band around the middle part of my chest I lay there just calming myself down my wife was out so I phoned 111 to ask for advice answered their questions next thing I am being asked to do is get my wife to come back home as I was going to be Bluelighted by ambulance to hospital paramedics arrived done their tests then 8 hours later after more blood tests and a chest Xray I was allowed to go home next day I got my results my gp ordered an ultrasound on my abdomen to take a look at my liver,gallbladder kidneys and pancreas they all checked out fine my doctor said your triycigcerides were 11.85 which is deemed very high my SLT levels were in the 200s which is extremely extremely high I also had hemolytic anemia which is when your bone marrow is not producing enough normal blood cells that contain oxygen and B vitamins my bone marrow was producing large abnormal blood cells which do not have much oxygen or B vitamins more blood tests were taken even one for lymes as I had been bitten by a tick during the summer this came up negative I was advised to come off one of my meds which may have built up to toxic levels in my liver I then had some repeat blood tests plus ten more the wife was with me this time and was astounded I was asked to monitor my blood pressure for 1 week whilst also starting on blood pressure meds when I had been in the hospital my blood pressure was 202 my blood pressure has been all over this week one of them reading 122/111 while my pulse was 98 I wanted to test a theory by going upstairs a couple of times the theory was is that I was not getting enough oxygen through my system its all up in the air at the moment until I hand in my blood test results I know this site is about depression and anxiety but having all of the above just makes it 10 times worse I also have a formal diagnosis of PTSD I am down to get CBT but guess what this is only part of my story if you want to know moPsoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstair

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Lupus #Flares #Antibiotic

I'm taking Antibiotic for 7 days. Coz of some infections in my feet. Now I am having fever. I also have kidney issues. Tbh, my doctor said I can still work. For the past year I've been on and off from work. My insurance got denied. Lupus sucks. How do you cope up with flares up easily? It's affecting as well my income. How you find another job that would work on your needs ? Never thought I'm gonna have this kind of autoimmune #Lupus #Kidney #ChronicPain #Fibromyalgia #Grief #Anxiety #MentalHealth #Pelvicpain #Lupus #Insomnia #RaynaudsPhenomenon #Fever

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