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Rheumy time

I have my first appointment with a rheumatologist today. I am desperate for answers and I’m so nervous/anxious. What advice would you give to someone who has been suffering for a year and a half? What questions should I ask? #Rheumatologist

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I’m in pain but I don’t know why

Hi everyone! I’m new here n I saw this app when I was searching for people who have similar experience as mine.
I’m 20yo and around four years ago in 2019 i had some back problems that affect my nerves system as well and I’ve been going to physical therapy sessions for three months, three days in a week two hours each day, and at that time I started to feel pain in my joints (shoulders, knees and elbows) and day after day I started to feel pain all over my body literally everywhere, muscles pain, headache, digestive system problems whole body aches and weakness, and through these four years I went to 7 different rheumatologists and gastroenterologists, I’ve done some many check-ups n they told me everything is good except my tests shows that the CRP is positive and my ESR is so high, and all this affect my life in a bad way.
I’m in pain all the time but there are some times the pain get stronger and stronger and hold me from doing even the simplest tasks in life.
No one believes that I’m really in pain cuz I look normal, I look fine.
When I see others who’ve been diagnosed with Fibromyalgia I kinda feel like I belong but my rheumatologist didn’t say anything about it he just said that i need to do more check-ups and they gave an appointment in November but I feel like I can’t wait the long and really don’t know what do.
*I forgot to mention, when I started to feel that pain I was mentally stressed also #Pain #ache #Rheumatologist #Bodypain

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Think i forgot to post the painting on my last post 😅 ?

Rheumatologist went well, thank you for all that asked and gave advice! He's not sure yet if there is anything he can help me with, but he's the first doctor who's spent that much time trying to find answers! Plus just a very nice person. Here's the last bettafish i did. I cohosh remember if I'd posted him and liked back and don't see him so if i posted him before, i apologize! I'm Currently working on a mermaid watercolor. 🧜‍♀️ I'll post her when I've finished. 😁🧜‍♀️💙 #ChronicPain #ChronicIllness #Art #ArtTherapy #BackPain #Rheumatologist #AnkylosingSpondylitis #SpinalStenosis #ChronicMigraines

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Another Betta

This is another betta, painting them takes my mind off of life right now. I'm going to my 1st ever rheumatologist appointment today. Has anyone had rheumatologist experience? I have no idea what to expect, so I'm nervous. #ChronicIllness #chronicmigraine #ChronicFatigue #ChronicPain #BackPain #AnkylosingSpondylitis #SpinalStenosis #Rheumatologist #Art #ArtTherapy

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Do you live with low-level daily pain?

Every couple of months I see my hematologist and every couple of months I report some sort of pain. In December I mentioned my joints were becoming stiff and painful so he set up a referral to a rheumatologist before referring me to the pain clinic, worried pain meds would mask underlying problems.

Yesterday, during my physical exam, the doctor checked movement and range of motion of the major joints. Before the exam, she asked which area was most painful. For me it’s generally my right shoulder near the scapula, followed by my hips.

She manipulated joint by joint asking for my comfort level. Fine, fine, decent, and that actually feels good in a painful way-if that makes sense. Then she had me lay on my back and lifted my bent leg to the side.

OMG ouch!!!

She did the other leg. Same pain.

About an 8-9 on the pain scale.

“You’ve been living with so much pain for so long that you don’t even recognize it anymore. I’m sending you for X-rays and blood work. Results will be in Monday. We’ll talk then.”

If you’d have asked me a year ago if I had chronic pain I’d have said no. Then I learned that your daily pain baseline should be at 0, not 3, I began to realize I might have chronic pain. I still justified it away because I only occasionally had 6-8 level pain, so I’m good, right? Apparently some people don’t have daily pain?!?

This is your public service announcement that long time, low level pain probably needs checking out.

#ChronicPain #Rheumatologist #ouch

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Myasthenia Gravis? What to say to specialist?

Hi everyone,

I think (not sure) I'm suffering from Myasthenia Gravis. I have been severely unwell for around 2 years. I have episodes where I drop to the floor with weakness, so many more extensive symptoms. I'm going to see a specialist next week and I'm nervous. I have been treated very very badly by the NHS and only now I am going to see a top professional do I feel like they're taking it seriously. I am traumatised beyond belief by what has happened in my body, how I've been treated and still no diagnosis after 2 years. I'm scared he will disregard my symptoms too (I know he won't!), but how should I approach it? What symptoms did everyone else have?

All the best,
Len x #MyastheniaGravis #Rheumatologist #Depression #Anxiety #chronicconditions

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Hyper mobility issues #hypermobileehlers-DanlosSyndrome(hEDS)

Well. I am very hyper mobile and I installed some decorative lights in my room today. But I didn’t wear my braces because I’m bruising from them from my anemia right now.

Guess whose bed ridden and can barely stand.

Thank god I see the #Rheumatologist next week to figure out what exactly is happening.

I’m in so much pain and my joints feel completely out of place.

Ugh. I just want answers.

How does everyone else with #HypermobileTypeEDS deal with your joints constantly aching?