I feel like I am doing too much even though I'm not (I am barely doing anything)

I think it's the heat making the pain bad. heat and my pain never mixed well together

[lizardlady]

Pfrog, thanks for the humor. I needed a chuckle.

RV, I'm sorry you are losing your support group. Is there some place on the web where y'all could continue to meet? Maybe invite your friends to join PC?

[lizardlady]

Have any of you ever heard the period between flares referred to as being in remission? I was reading an article about fibro that used the term. It struck me as odd. I looked up the definition of the word "a disappearance of signs or symptoms of a disease". I suppose that could be true, but my symptoms never totally go away. I tend to think more in terms of symptoms flaring and fading.

[lizardlady]

Originally Posted by raging vortex

I feel like I am doing too much even though I'm not (I am barely doing anything)

I think it's the heat making the pain bad. heat and my pain never mixed well together

RV, I have a friend with fibro who suffers with the heat. I'm the opposite. Cold dang near kills me, but I love the heat. After all, I are a lizard! I joke that I'm solar powered. I will go outside and stand in the sun with my arms stretched out soaking up the Ray's.

I'm sorry the heat is making you miserable. :sad:

Originally Posted by lizardlady

Have any of you ever heard the period between flares referred to as being in remission? I was reading an article about fibro that used the term. It struck me as odd. I looked up the definition of the word "a disappearance of signs or symptoms of a disease". I suppose that could be true, but my symptoms never totally go away. I tend to think more in terms of symptoms flaring and fading.

I find "remission" an odd description as well, @lizardlady.

I've often likened mine to being in a vice-grip.

Clamping down then letting loose.

Flare & Fade ... Squeeze & Ease ...

Way more accurate than all that medical mumbo-jumbo the "experts" use IMHO!

Originally Posted by lizardlady

Have any of you ever heard the period between flares referred to as being in remission? I was reading an article about fibro that used the term. It struck me as odd. I looked up the definition of the word "a disappearance of signs or symptoms of a disease". I suppose that could be true, but my symptoms never totally go away. I tend to think more in terms of symptoms flaring and fading.

it makes me think of cancer, so I tend not to use it

Originally Posted by lizardlady

Pfrog, thanks for the humor. I needed a chuckle.

RV, I'm sorry you are losing your support group. Is there some place on the web where y'all could continue to meet? Maybe invite your friends to join PC?

my plan is to start a thread in the women focused support to gage interest in a social group, then I'm thinking about creating one here on this site. sadly, my old support group members never wanted to share their contact outside the group (which I suppose is fair enough). I have looked for other places, but the 2 comunities I've found are extremely dead (one of them even stopped with having other moderators around, and just anything is posted on topic or not)

[~Christina]

Hiya Ladies

I do not get "remissions" My pain is always stupid but a 6.5-7 I muddle through but when it hits 8 and climbing. Argh ! Its impossible to breath deep. The ONLY time I have ever had a steady decrease in pain and hovered at about a 4 was while doing the Lidocaine infusions .. Oh I miss that. It truly was a miracle. Oh course the trial was ended years ago.. But No one was making enough money to make it worth there while. My copay weekly was 32.00

Im down to the last couple days of Steroids for this Bronchitits and Asthma flare.. So literally no sleep for 2 weeks now, My Husband was in the hospital, Honestly when I dropped him at the hospital ER door I wasnt sure I would see him alive again. So more health problems, Diabetes type II ... but hes home, Safer at home that to be there and a chance to catch COVID or some other shyt per the Hospital Doctor.

So pain is ugly ! Its hot muggy miserable and I had to put a bra on today, go to town for phone T session and pick up a med at Hellmart

Liz........ I know you like the heat but I saw the heat advisory for the next few days Becareful and hydrate ! My Daughter is keeping herself inside and plans to hop in and out of the shower for days ..

Gentle hugs

[lizardlady]

Christina, I had to put on a bra today for the first time in weeks. Hateful things aren't they?

I will be careful about the heat. When I went out to feed the horses it was 99 degrees inside the barn, in the shade!

I don't think of fibro in terms of remission either. I think of it more in terms of flares.

Supposed to go have physical Monday.

Got a new PCP and everything.

Also very anxious about Covid-19 exposure because cases are jumpin' higher than a grasshopper on hot pavement in our area.

So .....

Most likely gonna cancel!

Originally Posted by Pfrog

Supposed to go have physical Monday.

Got a new PCP and everything.

Also very anxious about Covid-19 exposure because cases are jumpin' higher than a grasshopper on hot pavement in our area.

So .....

Most likely gonna cancel!

I think quite a lot of us are anxious over new covid19 cases and being exposed to the virus

going to be very diffrent going out post lockdown

hot and in a lot of pain

that is all

[Cocosurviving]

I’m still top side up (alive). Tuesday I had to be rushed to urgent care because of my asthma. I was able to leave after a breathing treatment. I received a nebulizer machine that evening only to find out Wednesday that my immunology specialist’s office screwed up my diagnosis code. I had to make several calls trying to get this matter resolved. They sent me for labs a week ago and that was messed up too. No diagnosis codes or billing codes were listed. The labs said miscellaneous for all six. I was in the lab for two hours because the workers were trying to find out the name of the six lab tests. Plus call Medicare for a prior authorization. I’m glad the lab technicians were so nice. They were having anxiety about me waiting so long but I clearly was aware the mess up was on the side of my immunology office. My fibromyalgia pain started back up today. Usually my pain starts on my left side and moves around my whole body but today it started on my right side. I’m going to listen to a podcast, soak and take a breathing treatment.

[~Christina]

Pfrog

I understand the fear of going to see Doctors right now. I am cancelling MRI, US and Mammo I have on the books for the 6th..

Yes we all need to take care of health issues to catch things early etc... but yeah right now ? Nope I'll put it off !

Liz.. Ugh 99 Back when I had my horses, One summer we had almost a week of temps 100-108 and feels like higher, of course I stopped there grain and they had quickly burning up pasture and hay to eat but I was out hosing them down every couple hours. They were miserable. The odd thing was my goat herd ? Showed no issues with the heat at all, I kept overflowing there water so they at least had cooler water to drink. They went about life like normal

Gentle hugs

hurt because of a shower

hurt because of the heat

just hurt

[lizardlady]

Christina, my horses line up to get hosed off when it's hot. They ain't no dummies.

I thought of you yesterday working at Mom's. I didn't get into anything too strenuous, but was still drained by the end of the day. Going to stay home today and stuff inside.

[Cocosurviving]

Originally Posted by raging vortex

I think quite a lot of us are anxious over new covid19 cases and being exposed to the virus

going to be very diffrent going out post lockdown

This is very true. Individuals that are immunocomprised need to be very diligent. When I received my cannabis license I did that by e-visit via FaceTime.

I only attend medically necessary appointments. I’m living in Oklahoma and part of the healthcare system here requires referrals to receive treatment by any type of specialists regardless of the insurance the individuals have.

Primary care providers are the middle person’s to individuals with chronic illnesses, rare diseases, autoimmune diseases and disabilities getting to their necessary specialists. All referrals have expiration dates and most be renewed by a primary care provider.

Yes, I absolutely attended my appointment with my primary care provider for the purpose that I needed all my referrals to my specialists renewed. I see a rheumatologist, immunologist, nutritionists, dermatologists, endocrinologist and a gynecologists.

Each specialist office has to receive an individual referral request.
Also certain treatment plans I have and medications I take. My primary care provider will not refill, advise or monitor. Each specialists works with me and conducts lab tests to assist with creating an individual treatment plan for me.

When I lived in Tennessee for years referrals were not required however this varies from state to state etc.

The medical services I receive have multiple specialists within the agency. I do like the processes they have in place. Medical mask 😷 are given out to everyone to wear. Each person must have their temperature taken before each appointment and prior to going upstairs. The individuals temperature is written down and must be given to the nurse or medical assistant.

Prior to each of my appointments an e-mail will be receive to screen for Covid19 symptoms. These same questions are asked at each appointment as well.

Take care and be safe.

[~Christina]

Originally Posted by lizardlady

Christina, my horses line up to get hosed off when it's hot. They ain't no dummies.

I thought of you yesterday working at Mom's. I didn't get into anything too strenuous, but was still drained by the end of the day. Going to stay home today and stuff inside.

Smart horses for sure !

Yes a day in is a good idea !

nothing at all to do with fibro, but I had to post to say that I have a healthy rumbly tummy

this means I should eat well tonight (and I don't just mean the usual junkfood)

we had storms yesterday. they were needed to cool down the air, yet it's still pretty warm. I have my fan on today

Pfrog Is Tired Of Being In Pain All The Time ...

[Cocosurviving]

My morning started off rocky...very nauseous, IBS and fatigue. I ate a very small and light breakfast. I ate a light lunch and took my vitamins, immune supplements and meds. Me and my baby (furry canine baby) laid in bed a bit. I called to check on my aunt and went for a walk. I think eating really helped. Me and my aunt just chatted away about many topic and had a good conversation. I folded some of my laundry. I’m going to cook some fresh vegetables for dinner to eat with my soup. I have several appointments coming up and paperwork to complete. Overall today was a decent day.

Pfrog is also tired of how complicated everything has to be ...

I was proven right and ate well yesterday- in fact: I ate so fast I almost choked (very hungry!)

no sleep last night, and doing nothing today- so basically groundhog day

weather is warm at the moment, but we're expecting flooding (that's what the weather says anyway)

hope so: because I love that kind of weather

[lizardlady]

Pfrog, I love the turtle picture. That is so me today.

[lizardlady]

I am sick as a pup today. It's either a cold or allergies. I'm hoping allergies. If it's a cold that means I was exposed to someone who could infect me. If they could infect me with cold virus, they could expose me to covid. *sigh*