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I’m new here!

Hello everyone, my name is tiredmamma. It took awhile before I could find a username that would be accepted 🙈 seems as if I have someone who identifies the same way lol. My pain journey started when I was in High School (Senior High?) at the age of 17yrs. I suffer from chronic daily headaches with at least 2 migraines a month. They are severe and are going strong 40 years later. If only it had stayed there 😪 Depression then knocked on my doorstep, followed my Fibromyalgia, Arthritis and Neuropathy. I had a spinal fusion 3mnths ago which has affected my ability to walk. I am now mostly bedridden and my desire to live is fast fading. It is getting harder and harder to ignore the pain and a longing to be free is strong. Not at a good place so please forgive the negativity 😑

#MightyTogether #Depression #Migraine #Fibromyalgia #EatingDisorder #Grief #RheumatoidArthritis

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Mighty Family!!!! I have missed you guys so much and thought and prayed for you daily ❤️

Months ago I was at my very worst. My health had gotten so poor that I was fully bed bound and unable to do anything on my own. I also needed constant care with my memory getting so bad I forgot my name, who my family was, all friends a missing blavk hole where they should have been in my memory. I kept getting lost and confused not remembering basic words and my hands were still excruciating with their inability to work getting even more drastic. My pain was a 10+ though doctors only think pain is a 1 to 10 we know it still can rise to the thousands.

Suicidal thoughts were so bad I was actually planning though losing a best friend's to suicide at 15yrs old still kept me and will always keep me from taking a step no one can come back from that haunts family and friends and leaves things so very messy and heartbreaking.

My so-called pain doctor was still doing nothing after 3 years and countless appointments begging for help I'm any form. He kept me on the same teeny tiny dose for years and wouldn't try any other meds or any other options. I had had no episodes ever of overdose or failing any drug tests but still he refused to help at all despite my first appointment with him where he promised to help me get to where I could shower and dress myself daily.

I wanted to ditch him as my doctor soooo many times despite him being my third and last option since we hadn't been able to find any replacement.
I realized the stress and misery he brought me always and especially after every three month appointment. It wasn't worth the useless dose of medicine I was on. Many doctors left me in a lurch to taper off my meds on my own. I knew how to do it so I called and said I was dropping him as my doctor. From that moment on I felt relief like the biggest weight was gone. Yes my pain was excruciating but my mental health was the biggest mess because of so many doctors refusing to help and leaving me since I was 'too complicated for them'. They just didn't want to put in the work at time.

Why be a doctor if you don't want to help anyone?!

Steadily my mental health improved immensely. I had moments where I was happy though still in pain. Naturally I am a very optimistic and happy soul but moving to a new state and having the cruelest doctors unsurprisingly made me so much worse.

I have a home health nurse that actually wants the very best for me and that was priceless and enough.

And then I got a brilliant and lovely rheumatologist who actually asked intelligent questions, explained answers, and was invested in taking as much time as needed to finish solving my health. He UNDERSTOOD!!! And at my second appointment with him he told us the answers we had been searching for for 17yrs! Since I was 13.

On top of my many inherent diagnoses I had psoriatic arthritis spine arthritis, and rheumatoid arthritis!!!!
The thing that we all thought was lupus but just barely didn't fit was the psoriatic arthritis!
It was the last piece of a puzzle we had tried solving many a time.
Interestingly I had finally narrowed my research to these diagnoses and was months away from figuring it out too.
But I was very happy to have the answers early!

My first appointment with the rheumatologist he gave me arthritis medicine and WOW did it work and so much better than any medicine my hundreds of doctors over the years had tried.
My hands improved!!!! I had feeling in them again and was able to do so much more than I had since I was 16 when I had my waist down reconstruction surgeries that would lead to arthritis all over my body especially to where I was completely unable to use my hands by 17. It was so embarrassing and painful that my body seemed so intent on not working eight. Oh how I just wanted you be normal!!!

And my last but of good news is I at LAST got a new pain doctor after being without officially for three months. My mental health anxiety and depression had improved so that my stress and thereby my pain had decreased to #9 on the pain scale!!! After being a 10 for almost 8 years!!!!!

My new pain doctor was COMPLETELY the opposite of my last one.

From a guy who ALWAYS worse fancy suits and thousand dollar shoes to one in jeans and a t-shirt.
From a guy who never smiled and wouldn't put in time and effort to a guy who smiled the whole appointment and was ready and Excited to put in the work to help me live my very best life!
From a guy who was too proper and cold to one who was so friendly and happy about his job.
From one who was terrified of any teeny hit of using medicine to one ready to take any risk if it meant helping his patients be safe but with less pain.

My new doctor was like the twin of actor Vin Diesel and he was so SO SO tall!
Even better since the drive is so hard for patients to do always, he would do telehealth for two appointments, one in person, and then another two telehealth appointments etc. Yay!!!!! Hallelujah!!!
Lol I was and still am so happy! And he wanted a telehealth appointment a week after the first appointment yo make sure my new meds were the best option.

For YEARS I have wanted a doctor who was there to help always and one who helped me with my meds rather than drop me in a black hole and leave all alone to figure out and guess by myself. To actually be a TEAM and work together to help me help my body so I would LIVE like I had begged all my doctor to help me to no avail! I could have a LIFE that I loved and do fun things and spend time with my family!!!! No more sleeping life away in pain and misery and hopelessness!!!!
It only took 17 years! Haha!

So now I am BACK and back to my happy self. I still have aches and pains full body and I have all my health issues and more besides but I am in a better place than I have ever been.

All of your support and love and encouragement to take time for ME was what I needed. I am so thankful for it and for all of your help over these many years.

Now if only it could get easier to post with no problems like before I would dare to call life quite perfect right now ;) 🙏

So consider this a reminder thar life is worth it! If things suck now, just remember that if one day they come up with something that can help you and your conditions, I PROMISE you will want to be around then to live your best life.

Hold onto hope! DON'T GIVE UP!! Please please don't. Through sheer will and the grace of God I am still here and gosh do I look back now and say it was worth the wait I wouldn't want to relive it lol but having a possibility to go to the movies again and do fun things out in the world with my family? It is priceless! Please hold on. Please. You and your best life are worth it! You are Not alone in this.

I am cheering you on and I am on your side. Your happy is out there! You CAN do this!!!!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Grief #Insomnia #Lupus #Lymphedema #Headache #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psychosis #PsoriaticArthritis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #MentalHealth #MemoryLoss #MightyTogether #SuicidalThoughts #Scoliosis #Migraine

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Light therapy?

I’m so glad winter is coming to and end and spring is blooming with longer sunnier days. I find that although I love the rain…the cold and cloudy days makes me feel worse. Some days I just want to disappear …does anyone use light therapy to get through the winter? Has it made a considerable difference?
#Depression #ChronicFatigue #Grief #Migraine #Arthritis #SpinalStenosis #Fibromyalgia #MentalHealth

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I’m new here!

Hi, my name is zeba. I'm here because I have fibromyalgia, or muscle pain and arthritis in all my joints. I'm bedbound because of it, and have been for years. I don't know anyone that it has affected them

#MightyTogether #Fibromyalgia

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How does your illness(es) affect your schedule? Is yours well controlled?

This is what my chronic illness schedule looks like for the remainder of the month into April. It’s not even including my 4hr. home infusion I receive monthly either. #Spoonie #RareDisease #ChronicIllness #CommonVariableImmuneDeficiency #ChronicPain #Arthritis #Sarcoidosis ##ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia

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Forever preemie!

1 1/2 pounds @ birth 72+ years ago!!!! #Chronically messed up according to my mom. # CPtSD # invalidated##empath #conditions including several types of arthritis, # check in with me #empath #Anxiety

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Does managing your illness(es) feel like a full-time job?

I’ve got all my specialist appointments scheduled for the new year now that my deductible has hopefully been met. Time to start pursuing treatment plans, procedures, diagnoses, etc. It starts all over again. Back on the phone being a secretary. The trips to Atlanta are often extraneous too. It’s exhausting being chronically ill & there’s no paid leave or vacation time from it. I just wish I could escape it all somehow. It feels like everything falls on the patient. I’ve worked very hard organizing a team of Emory doctors so they’ll communicate with one another better over my care. It hasn’t been easy because I’m a uniquely “difficult” case due to my PI or primary immunodeficiency on top of everything else. I can’t just take biologics & steroids all the time because it lowers my ability to fight infections & I’m already prone to them. That’s why I receive monthly plasma infusions. It just makes pursuing my other rare diagnosis that much more difficult since I don’t produce my own antibodies. I need the official diagnoses so I can reapply for SSI again. It’s just so costly being this sick & disabled. I’m over it. How do you bear the burden of it all? I rely so much on my spouse & immediate family for support. I can’t even drive myself anymore. I want my independence & health back. Unfortunately, the older you get the more our immune systems get depleted. I’m determined to continue on fighting & advocating for myself. Thanks for having me in the Mighty community. It means a lot to have a place to come to that understands. #Spoonie #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #RareDisease #Sarcoidosis #Arthritis #CommonVariableImmuneDeficiency #PTSD #MentalHealth #Anxiety #ObsessiveCompulsiveDisorder

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worrying about never getting an answer

hope i can find some advice on here!
any idea on what could be causing all this?

i started having symptoms in February 2023, my first symptom was Abdominal pain.
these are some of my current symptoms

abdominal pain (February 16) (achy,stabbing, sharp, cramps, /sometimes spasms)
temperatures/ fevers (99.0-102.1)
joint pain
heart palpitations when standing
dizziness
feeling extremely full after eating something small
nonexistent appetite at times
vomiting/nausea
upper stomach pain (achy/cramps)
abdominal pain getting worse after eating (about an hour after)
Upper stomach pain getting worse after eating (30-40 minutes)
(lower and middle)back pain (cramps and achy)
SOB when standing or sitting up too fast
lightheadedness when standing or sitting up too fast/ everything going black
stomach hurting/ feeling full after a sip of water
waking up with weak arms/legs
my hands feel like puffy and stiff when i wake up?
horrible Salt cravings (I can’t stop 😩)
Headaches upon waking up and last for a couple days
purple nail beds
Fingers curving in
Food feeling stuck in throat

i have been diagnosed with

(AMPS) Fibromyalgia
Joint hypermobility
Chronic pain
Chronic Nausea and Vomiting
Visceral hypersensitivity
Chronic gastritis
Abdominal Pain
Hypoglycemia
Vitamin D below Reference Range
Iron Deficiency Anemia
Elevated Blood-pressure Reading without Diagnosis of Hypertension
Excessive Weight Gain
Tachycardia

possible EDS as well
i don’t fully believe the IBS because i continuously get undiagnosed and then diagnosed with it/ my doctors don’t agree on anything.
i was also diagnosed with somatic symptom disorder but have been cleared from that.
my psychiatrist says they don’t believe it’s “my mind causing my symptoms” because our “minds are powerful but not to this point”

i have seen a GI doctor, rheumatologist, and awaiting to see an endocrinologist.
i have had fevers since i got sick, i believe my highest one was 105F (this happened while i was in a helicopter being transported)
i had abnormal labs back in March 2023 and some of them are still a little strange.
(i think these are all?)
lab work:
low WBC
low MCH
high RDW
low neutrophils
low lymphocytes
high CRP
mildly elevated ESR
mildly elevated Alanine Transferase
(barely) low Creatinine Serum
low Ferritin (has gone up now though)

i have had 4 CT scans (some doctor claimed he saw inflammation in my right side, however i have been told that is not true)
MRE
brain MRI
MRI to rule out arthritis
colonoscopy
Endoscopy
Ultrasounds
HIDA scan
i also have been tested for POTS but was told everything was normal and that i will grow out of it

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2.5 crap months, and at least another 3 to come... don't you love medication brand switches for no reason 😬

My rheumatology department switched me from Imraldi to Yuflyma at the end of January. They're both adalimumab but as they're proteins the structure isn't exactly the same. Having said that they *should* work the same as the active site should be the same. Basically yuflyma is cheaper so it costs the NHS less. I was willing to give it a go as its the same medication, although I knew there was a risk it wouldn't work, and well it hasn't... rant incoming!

The last 2.5 months have been sh*t. I had a flare in January before I switched brands- I was getting about 2 flares a year and this one was expected. It was treated with oral steroids. Tbh this flare wasn't too bad as the Imraldi was still working in the background.

Then I switched to Yulfyma. 5 weeks after the last flare (and last Imraldi dose), bam another flare. Again treated with oral steroids which took a lot longer to work than usual, probably because the Imraldi was very low in my system by this point. Rheumatology agreed I might need to switch back, or it could just be an effect of switching brands, so we'll revisit it at 12 weeks of the new brand (it takes 12 weeks to build up in your system to get the full effects).

Well, now 5 weeks after the last flare I'm in another one 🤦‍♀️ I'll contact rheumatology on Monday, get more steroids and switch back to Imraldi. But that also means facing another 3 months of this flare cycle once I get Imraldi back and that could take a little while.

So I'm facing a minimum of 3 more sh*t months and I'm fed up already. There's also no guarantee Imraldi will still work 😫

That 3 months of known crap health overlaps with the spring qualification series for English and British trampoline gymnastics where I compete in the disability category. How utter *insert string of expletives here*. I've been working so hard for 6 months to prep and build up to the season and make improvements to my routines and now it feels like that's all gone out of the window. I had a crap season in 2019 before the pandemic put a halt on everything, and last year was my first season back that was also marred by an injury and then covid. Can I not just catch a break and have a good season for once? 😡

Oh and did I mention that I've got a 3hr drive tomorrow to work from a different office next week? Why do flares always happen at the worst possible time. 😮‍💨 Next week is going to be hell but at least I'm closer to my rheumatology department.

So yeah 2am, I'm utterly broken, fed up, anxious, low, and at my wits end. I don't know what I can do right now to feel better as I've already tried everything. Oh and did I mention I want sleep? Chronic pain sucks.

Somebody just please make AS piss off now and leave me alone for once 😢

#ChronicIllness #ChronicPain #axialSpondyloarthritis #AnkylosingSpondylitis #Arthritis

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