Going on four days, thoughts and prayers appreciated

[JennaShi]

Please keep me in your thoughts and prayers. I've seemed to narrow down the reoccurring headache behind my eyes to caffeine withdrawal and cheek jaw pain in gone. Yay!

However, i woke up this morning with agonizing lower back pain and lower right side pain and middle stomach pain. I hadn’t had a bowel movement for four days despite being on the miralax and psyllium powder. So I did an enema and this may be tmi but alot came out! Right side barely hurts so most likely fixed that problem.

The things that keep coming back (3 rounds of two advil cause that’s all I got) are: joint and musko-skeletal calf and sometimes even front shin area, chills despite being a temp in the 98F range, higher intensity neuropathy, stomach ache, pain in left rib again, and breathlessness even more so because of laying down so much the last 4 days. I’m at an 8/9 when the advil wears off and it doesn’t take if away. Trying CBD oil and lots of prayer. I don’t think it’s Covid as this has happened before but man the intensity is bad. I have tried calling around and even driving to get a rapid test but it has been a no go. Tried calling medpost more than once (the one I hate even) to get an appointment for a pcr and they didn’t pick up; my primary close by doesn’t even do a pcr test anymore and i guess the other location doesn’t. I was able to order two home kits online and schedule a pcr appointment for the 7th. Trying to get an appointment really sucks out here and my primary can dish out the assumption of “you having Covid symptoms.. maybe it’s covid” said two nurses and my pa isn’t terribly convinced but she’s unsure. I’m sick of Covid, I’m fully vaccinated (yes I know you can still get it) but there would only be a couple of places I could’ve gotten it, including from the girls as they aren’t very careful.

Not much sleep is going to be happening tonight and may just drive myself to the er with the hope for more answers if this pain doesn’t subside. Does anyone experience the calf muscle issues? I know Dr. Taylor said could be connective tissue issue, just forgot to ask if it was lupus and or HSD. Would be nice but unfortunate to know if others experience this, especially with the cold or flu symptoms or a “episode/ flare” and if you got a good explanation.

[DRunnerchick]

J- IDK what to tell you. Fighting my own battles just now with a 90 day “nuclear” headache (I’ll be posting shortly) but, I do have issues with cramps in my R calf muscle (gastrocnemius) and have various spasms/myoclonic jerks that affect certain muscles randomly including my gut, which slows down my digestion process. Sometimes it can be quite painful. It is thought to be part of my Stiff Person Syndrome but they also haven’t ruled out SLE or Behcets so there could be overlap of symptoms🤷‍♀️

💐🍀✨

D🏃🏽‍♀️

[JennaShi in reply to DRunnerchick]

How are you doing D? That really sucks, are you sure its a headache and not a migraine? Have you decided to go to the ER?

the second you mentioned sounds rough too. I have issues in my gastrocnemius' as well, thats the muscle! I hear ya, and am so sorry. It seems that it can be hard to get a definitive answer when you don't have too many people who experience the same thing. But when bowels don't move or suddenly jerk, thats rough and I can relate to that. Sending you lots of hugs and hope that you get some relief for your nuclear headache.

[DRunnerchick in reply to JennaShi]

I’m on Day 97…

On day 17 of 2 new meds from the Wizard/neurologist. He referred me to ophthalmology back in June or July but that appointment doesn’t roll around until 29 September (for blurred vision since June). He prescribed one Med for hemicrania continua, which is pretty rare. No test for it other than H/A over 90 days and Indomethacin is the only treatment. He was leaning towards migraine. Although it isn’t like my prior migraines w/o aura, it could have been brought on by the Pfizer BioNTech vaccine 💉. He actually prescribed Aimovig but my insurance denied the preauth. Pissed off the Wizard (and me). Said we had to try propranolol or metoprolol (beta-blocker anti hypertensives) and fail first. Then they’ll probably make us jump through some other flaming hoop.

I wake up with my head banging every morning until the drinks kick in. My guess is, it’s the Indomethacin that’s working. The propranolol makes me dizzy and has dropped my bp down to 98/58-62 HR in the 50’s. YeeHaw 🤠 I hate poly pharmacy!! My appointment with the Wizard is 13 Oct. If I don’t adjust, I’ll message him about side effects.

I hope you are doing better! I’m staying out of the ER. They just got 2 more temporary morgue trucks in my city for COVID dead ☠️ and we have 70% vaccination rate. I don’t plan on being anywhere near unless I have to.

💐🍀✨😘

D🏃🏽‍♀️

[Hamptons]

Yes, I do get calf pain and the others you describe. It’s hard. Hope you get to see a doctor.

[JennaShi in reply to Hamptons]

thank you for your response, has your dr told you that they think its part of your lupus or connective tissue issue? it's rough isn't it?

[Hamptons in reply to JennaShi]

The calf pain is thought to be down to lupus. They have not explained how or why. It’s not helped by stiff joints which mean I overwork my muscles and they get tight.The pain is under my rib in my right side, I have been told it’s from gastritis which is exacerbated by meds. I don’t entirely believe this. I also get a stabbing pain under my rib in the right side, which is like being punched and stabbed alternately. I am continually told this is muscular again I do not agree as has a cycle and pattern to it.

[Hidden]

I have had IBS for over 30yrs but have recently gone veggie after watching seaspiracy best thing I have done, also started using chia and flax seeds to lower cholesterol and they have worked wonders in other ways no more constipation or cramps and hopefully lowering cholesterol as well, worth a try even if just relieves one symptom x

[JennaShi in reply to Hidden]

yes, I think I've hear about Seaspiracy, is this the one about the tuna? I will have to look it up again. I think thats great that you are experiencing relief with IBS and lowering cholesteral. Thank you, I am trying to add more fiber and veggies in my diet and believe they can work wonders. I have an additional issue which is my small fiber nerves that move the bowels along, don't work properly so even with adding extra water and fiber, they get blocked up. It sure is a process but I'm a fighter!

[Hidden in reply to JennaShi]

About over fishing etc but what finished it for me was scottish salmon in fish farms rotting away then had colour chart to dye fish omg

[JennaShi in reply to Hidden]

ohh yeah, I remember now. Ugh, that is just terrible! yeah, we definitely have a problem with over fishing the seas. My husband and I just started fishing for fun off the pier, but it definitely is a problem in our world today, especially with everything else that gets caught and killed in the nets.

[Hidden]

You need to see a Dr to diagnose and help. Take care x

[JennaShi in reply to Hidden]

Thank you, I have seen two, and was able to get a higher prescription pain killer which has helped tremendously.

[Roarah]

The seventh is to far out for a covid test. If it is covid the monoclonal antibodies need to be utilized early in disease. Find a test today to rule out covid then see your gp to discuss other possibilities. Do you have a temp or just chills?

[JennaShi in reply to Roarah]

I very much agree, Roarah. found an opening at a testing site and tested negative for covid with the PCR test. Felt warm and had chills but no fever, cough, or loss of taste and smell. My rheumatologist was able to prescribe a higher dose Aleve and I have been feeling much better. My primary thinks I had a flare, I think I may have flared in response to a cold or flu. Gosh it was terrible and am thankful to be back. Just wasn't able to get testing because I couldn't get a covid test in time and tried really hard not to go to the ER. They are busy these days with Covid and it can get expensive fast.