BeachGal Posted November 1, 2021 Share Posted November 1, 2021 Were you tested for Covid? It’s possible to get reinfected even if you’ve been fully vaccinated and had the disease. It’s also possible to have oddball symptoms and not the typical ones. The fatigue would fit. Covid affects blood vessels and can cause a cytokine storm (autoimmune response) that appears after the infection. If you are not sure, ask your doctors if they think this could be a result of a Covid infection. 3 Quote Link to comment Share on other sites More sharing options...
OH_Homeschooler Posted November 1, 2021 Share Posted November 1, 2021 6 minutes ago, WildflowerMom said: Would that happen in both arms? I don't *think* it's that, but dang that sounds better than what is floating around in my head right now. Probably not. 🤔 I hope you get answers very very soon. 1 Quote Link to comment Share on other sites More sharing options...
PeterPan Posted November 1, 2021 Share Posted November 1, 2021 8 minutes ago, WildflowerMom said: This could be lupus, right? 2 of cousins have it. My face has been red all weekend, cheeks. Joints in pain Did they run bloodwork to look for this? 2 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 1, 2021 Author Share Posted November 1, 2021 Lab work normal. Sending me to rheumatologist and I told them ASAP. I just want to cry. 8 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 1, 2021 Share Posted November 1, 2021 6 minutes ago, WildflowerMom said: This could be lupus, right? 2 of cousins have it. My face has been red all weekend, cheeks. Joints in pain Even if it is lupus, and I am not saying it is, it can be quite manageable with medication. I would gently advise you not to let your mind spin around possible diagnoses right now. Rheumatology (which handles lupus) is more of an art than a science. They rule out a number of things as they work for confirming factors for others. I would make sure they ran all of the vector born disease tests like babesiosis and so on as part of the diagnostic work up. I’d also want a covid test run. There is too much overlap between symptoms to know anything definitively without the labs. The issue in front of you at this moment is your other arm is symptomatic now. I’d call in to the nurse this am for guidance on how to proceed if they didn’t give you a list of things to watch for before. 3 2 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 1, 2021 Share Posted November 1, 2021 We posted at the same time…your additional info just hit before mine. I wasn’t trying to be insensitive. 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 1, 2021 Author Share Posted November 1, 2021 2 minutes ago, prairiewindmomma said: We posted at the same time…your additional info just hit before mine. I wasn’t trying to be insensitive. I didn't take any of that as insensitive. Not at all. 💛💛💛 I'm just so down right this second. It's good that lab is within normal ranges, that rules out the c-word and that was my big worry. Now it's just like it always is, feel horrible, tests turn out fine, write me off. 5 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 1, 2021 Author Share Posted November 1, 2021 What about a liver thing? Like maybe my liver needs a cleanse? Is that possible? My side has been achy all weekend where it's located Quote Link to comment Share on other sites More sharing options...
BeachGal Posted November 1, 2021 Share Posted November 1, 2021 I hope they will be able to give you a more definitive diagnosis soon. It is scary but like Prairiewindmomma said once they know what’s going on, they’ll be able to give you a better treatment plan. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 1, 2021 Share Posted November 1, 2021 A lot of lupus patients take ten years on average to get a diagnosis. Where you have genetics (family members with lupus) and symptoms, you are more likely to be taken seriously by rheumatology. I will say it is worth driving for a good rheumatologist. Early in my journey I regularly drove over an hour to a university hospital because they were on top of new medications and management much more than the local cowboys who hadn’t read a study in 30 years. My current rheumatologist is incompetent as heck but patient slots are hard to come by here and I didn’t want a 8 month wait and I know what I want and need now in a doctor. YMMV but feel free to pm me… 1 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 1, 2021 Share Posted November 1, 2021 Gently, a liver cleanse isn’t going to stop an autoimmune attack. Different processes of damage and resolution. Eating well and drinking plenty of water can support the liver and kidneys, and drinking dandelion tea can help support the natural cleansing process the liver performs but odds are if you are in a lupus flare that’s why you are sore…lupus attacks organs and tissue. But, you don’t know it’s lupus. Tick born disease can do crazy things as can viruses. Rest, find a good book, be gentle with yourself. 1 1 Quote Link to comment Share on other sites More sharing options...
BeachGal Posted November 1, 2021 Share Posted November 1, 2021 (edited) Did they do a liver panel? Any weird itching that’s not typical? ETA Make sure your doctors know that the area around your liver has been achy. Edited November 1, 2021 by BeachGal 2 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 1, 2021 Share Posted November 1, 2021 If you are a researcher personality: https://www.hopkinslupus.org/lupus-info/ 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 1, 2021 Share Posted November 1, 2021 Oh, and photograph your rash now in case it goes away soon. Rheumy will want to see it. Do a full face shot, and then a few closeups. Note if it is raised or bumpy. 5 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 1, 2021 Author Share Posted November 1, 2021 Took pic, prairie: thank you. I am at dr office again seeing head doctor. 8 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted November 1, 2021 Share Posted November 1, 2021 1 hour ago, WildflowerMom said: Tell me that this is probably nothing. I am in panic mode right now, waiting on call back from dr. I thought I'd wake up this morning a it would be all but gone, but it's creeped further up the vein and there's another lump. Whole vein is tender. This could just be lymph something right? Just something because I need to lose weight, im more susceptible to some luymph issue right? I've felt bad all weekend, joints in pain, burning face, burning skin on my arms. This best scenario is just some blood infection or lymph thing right? Vasculitis of some sort. But, that's likely very controllable and not a permanent thing. Hugs. Do ask the Rheum to run a FULL tick panel. Some can cause weird Autoimmune type stuff. 2 1 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 1, 2021 Share Posted November 1, 2021 2 hours ago, WildflowerMom said: What about a liver thing? Like maybe my liver needs a cleanse? Is that possible? My side has been achy all weekend where it's located Please don't do any kind of liver cleanse. If you actually have a liver problem, liver cleanses can make things go from bad to worse incredibly quickly -- they are generally a very bad idea, and I have never heard a liver specialist say a single good thing about them. That said, I don't think this is a liver issue. I don't know if you remember, but my dh had a liver transplant, so I'm very familiar with liver symptoms, and this stuff that is going on with you doesn't sound like any liver problem I know of. I mean, obviously I'm not a doctor, so if you're having pain in the area, you should definitely get it checked out, but if you had an infection that was bad enough to cause actual pain, it would show up in your bloodwork and yours is normal. But seriously, don't do the liver cleanse thing. You might end up just creating a whole new problem for yourself. Can you see a vascular specialist? I'm worried that you are getting more symptoms and I wish you could get answers quickly so you can prevent things from getting worse. Does anyone you know have a really great GP you could see right away for a second opinion, particularly an older doctor who has been in practice for so many years that he or she has seen all kinds of unusual conditions? (I'm suggesting a GP because it might be easier to get a quick appointment, whereas it can take a while to get in to see specialists.) I also agree with everyone who has suggested that you be tested for tick borne illnesses (not just Lyme disease,) because they can cause all kinds of bizarre symptoms that most doctors would never be able to identify by presentation alone. It's so simple to be tested, yet many doctors don't do it, and don't take tickborne illnesses seriously. 3 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 1, 2021 Share Posted November 1, 2021 3 hours ago, WildflowerMom said: I've felt bad all weekend, joints in pain, burning face, burning skin on my arms. 3 hours ago, WildflowerMom said: My face has been red all weekend, cheeks. Joints in pain These additional symptoms are ringing bells here. A friend had this happen to her all of the sudden, and she was diagnosed with dermatomyositis. It's not great news, but it's an autoimmune condition that has some treatment options. It would also explain your muscle weakness. 3 hours ago, WildflowerMom said: Lab work normal. Sending me to rheumatologist and I told them ASAP. I just want to cry. My friend had a lot of normal labwork too. I don't remember what came up that led to dermatomyositis. You might need to see an immunologist. My friend is still navigating who is the best specialist or team of them locally for her issue. I am so sorry. This sounds miserable. 3 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 1, 2021 Author Share Posted November 1, 2021 They head dr called and had me come see him. He’s confused too. He is getting me into see the rheumatologist and wanted it done today but when he called, the recording said the office was closed. Who knows why. Small town crap. He says it’s possible my atenolol could be causing it but he doesn’t want to take me off that until I see a rheumatologist. I’ve been on atenolol for 17 years. So 🤷🏻♀️. Idk, maybe. I will look into the dermatomyositis. Right now, I’m just done. I came home and have been cleaning out the utility room. Don’t care if that’s healthy or not, don’t care at all at this point. I’m sure it’s simple, and I think that’s why it’s irritating me. But it also scared the crap out of me this morning. I looked down expecting just a faint spot and it was a red line. The red line has faded, but the vein feels bruised and has a red spot further down. It’s like, let me just look down and both arm veins look normal. Like, poof, gone. I won’t don’t anything about liver health right now, I’m just flummoxed 3 4 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 1, 2021 Author Share Posted November 1, 2021 And wouldn’t liver stuff show up on blood work? 2 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 1, 2021 Share Posted November 1, 2021 10 minutes ago, WildflowerMom said: And wouldn’t liver stuff show up on blood work? Yes, it would. I think you should be able to cross that off of your list of possibilities, which is actually a pretty big thing to not have to worry about. I'm glad your doctor wants you to be seen ASAP, because hopefully that will mean you will get an appointment very soon. How incredibly frustrating that the office was closed today!!! 1 1 Quote Link to comment Share on other sites More sharing options...
BeachGal Posted November 1, 2021 Share Posted November 1, 2021 Did they say anything about the possibility that you might have had a recent Covid infection? Or testing you for it? It's possible you wouldn't even test positive. It is affecting some people's livers and it's definitely affecting blood vessels. It's such a weird virus. 4 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 1, 2021 Share Posted November 1, 2021 To give you a leg up when you're up to it... https://www.myositis.org/about-myositis/types-of-myositis/dermatomyositis/ Quote The skin rash and weak muscles are caused by inflammation, or swelling, in the blood vessels under the skin and in the muscles, also called vasculitis. The weakness typically begins with muscles that are closest to and within the trunk of the body, such as the neck, hip, back, and shoulder muscles. Some DM patients also have muscle pain that accompanies the weakness. I boldfaced the text, but other wise, this is a copy and paste from the website. I had forgotten, but my friend had some tissue biopsies for diagnosis, so you might want to push for a referral. It's not unusual for specialists to want to use certain labs for these types of biopsies so that they can ensure your stuff is seen by someone with experience with rare stuff. If you don't think you'll get that kind of treatment, call around and maybe be willing to travel a bit. https://www.mayoclinic.org/diseases-conditions/dermatomyositis/diagnosis-treatment/drc-20353192 https://nyulangone.org/conditions/dermatomyositis/diagnosis I don't remember if you've stated your general location, but if we are reasonably near each other, I might be able to find out who my friend has been seeing. PM me about that if you'd like to. 2 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 1, 2021 Share Posted November 1, 2021 P.S. When my friend was diagnosed, the doctor had it whittled down to either lupus or dermatomyositis, so there are definite overlaps. 1 Quote Link to comment Share on other sites More sharing options...
BeachGal Posted November 1, 2021 Share Posted November 1, 2021 4 minutes ago, kbutton said: I don't remember if you've stated your general location, but if we are reasonably near each other, I might be able to find out who my friend has been seeing. PM me about that if you'd like to. Or, if she's not near you, your friend's doctor might be able to recommend someone near WildflowerMom who has dealt with dermatomyositis. I lurk on the Reddit Medicine board and have noticed that MDs share experiences and advice with each other about unusual cases. 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 1, 2021 Share Posted November 1, 2021 1 minute ago, BeachGal said: Or, if she's not near you, your friend's doctor might be able to recommend someone near WildflowerMom who has dealt with dermatomyositis. I lurk on the Reddit Medicine board and have noticed that MDs share experiences and advice with each other about unusual cases. Excellent point! 2 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 1, 2021 Author Share Posted November 1, 2021 KButton, thank you! I'm looking into that. 💛💛💛 This dr I saw today is the big-wig dr here in town and is in his 80's. He was bringing out books and looking on his phone trying his best to figure something out. I think he thinks it's auto-immune, but he did mention the Atenolol. So, I've cleaned out the utility room, cussed a bit, threw stuff in the trash, and put on some taco soup and now I'm showered and trying to read up on everything. I've been on Atenolol for sooooooo long (17 years, no stopping), that I just didn't consider it to be even a remote possibility. But now that I'm looking, I'm surprised and I think it might be the culprit. What happens when you go off a beta-blocker after 17 years? I think that might be in the cards for me in the near future. 3 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 1, 2021 Share Posted November 1, 2021 (edited) 44 minutes ago, WildflowerMom said: I've been on Atenolol for sooooooo long (17 years, no stopping), that I just didn't consider it to be even a remote possibility. But now that I'm looking, I'm surprised and I think it might be the culprit. What happens when you go off a beta-blocker after 17 years? I think that might be in the cards for me in the near future. That would be better news than dermatomyositis, but I want you to have information ahead if it's not. It just stinks to have something weird and not have a place to start. I guess it depends on why you're on the beta blocker--there are other similar meds, but they all have nuanced uses even if most are for blood pressure. ETA: I say this as the mom of someone who will likely be on a beta blocker for life and started at age 9--I think it's really unusual to have issues so late in the game. We've met dozens of people in the same boat (rare disease community), and it's more typical to need to work around something like a beta blocker exacerbating asthma. Edited November 1, 2021 by kbutton 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 1, 2021 Share Posted November 1, 2021 46 minutes ago, WildflowerMom said: This dr I saw today is the big-wig dr here in town and is in his 80's. He was bringing out books and looking on his phone trying his best to figure something out. I love this, BTW. I just hope he knows when to call in reinforcements. He sounds caring. 6 Quote Link to comment Share on other sites More sharing options...
NewnameC Posted November 2, 2021 Share Posted November 2, 2021 6 hours ago, kbutton said: P.S. When my friend was diagnosed, the doctor had it whittled down to either lupus or dermatomyositis, so there are definite overlaps. OP Sounds like your doctor is doing a great job of tracking down the issue. My mother had similar issues when I was finishing college/getting married/ building a house. Not sure of all details anymore, but she had two doctors. One was convinced it was lupus and one was convinced it was not lupus. The second one was correct. She had dermatommyositis. She was extremely weak for a few weeks, could not walk up stairs, couldn’t brush her hair, etc. I don’t remember how long it took to diagnose. I think her case happened quickly. She was hiking in December and unable to walk stairs in January/February. I know she took prednisone for a number of years to treat it. All her weakness was gone by the time my kids were born a few years later. She painted the nursery wall decorations and made the curtains. She is healthy as a horse now. (My oldest kids are all out of college) My MIL had lupus, but was diagnosed before I was in the family. I don’t remember her having any major issues with it; she had the typical rash. She did stay out of the sun or wore a hat while outside. She died of cancer years later. 2 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 2, 2021 Author Share Posted November 2, 2021 I have my bloodwork results... here's what was a little high and low. high Mcv 95.4 fL Normal range: 79.3-94.8 fL. low Mchc 32.8 g/dL normal range: 33.5-35.5 Low Co2 19 mmol/L Normal range: 20-29 mmol/L high A/g Ratio 2.4 g/dL Normal range: 1.1-2.2 g/dL 2 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted November 2, 2021 Share Posted November 2, 2021 Everything looks very close to normal. I wish there was one big, all-encompassing blood test that could check for EVERYTHING. As it is, you still have no answers. 😞 2 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted November 2, 2021 Share Posted November 2, 2021 Do you go to a GP or an Internal Med doctor? An internal med doctor would be better equipped to know where to go next, I think. Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 2, 2021 Author Share Posted November 2, 2021 Yeah, seriously. I still haven't heard from rheumy, but at this point, I've about given up looking for an answer. Veins still swollen, tender, but at least it's not the c-word. It's nothing major, I don't think. Just really weird. I don't have the motivation right now to look for an answer, I guess. It's gotten me very, very depressed. 🤷🏻♀️ 1 3 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 2, 2021 Author Share Posted November 2, 2021 2 minutes ago, Jean in Newcastle said: Do you go to a GP or an Internal Med doctor? An internal med doctor would be better equipped to know where to go next, I think. Sorry, I missed this post before I replied to Cat. I'm seeing a GP. Another doctor is probably on the horizon, but I'm not pushing it right this minute. I just don't care. That sounds pretty bad, it's not meant to be. I'm just kind of done. 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 2, 2021 Author Share Posted November 2, 2021 I'm thinking of talking to my doctor about just going off everything (especially the atenolol) and see what happens, while them closely monitoring everything. 3 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted November 2, 2021 Share Posted November 2, 2021 Some of those blood results hint at anemia but I am not a doctor. Did they do a liver panel? Test kidney function? I would want those just for extra reassurance. 1 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 2, 2021 Share Posted November 2, 2021 3 hours ago, WildflowerMom said: I have my bloodwork results... here's what was a little high and low. high Mcv 95.4 fL Normal range: 79.3-94.8 fL. low Mchc 32.8 g/dL normal range: 33.5-35.5 Low Co2 19 mmol/L Normal range: 20-29 mmol/L high A/g Ratio 2.4 g/dL Normal range: 1.1-2.2 g/dL These are just blood counts. It looks like no one has run the antibodies tests yet for lupus. I think those are the ones you need, in addition to the vector borne disease ones. Please don’t give up until you get those answers. Feeling tired and depressed is the flip side of high anxiety. It’s a common emotional swing, but honestly at your point I think you should feel a wee bit frustrated. You need to be getting in with a rheumatologist who is competent enough in this area to run what needs to be done. At this point, you have only explored a tiny bit of the map… 5 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 2, 2021 Share Posted November 2, 2021 1 hour ago, WildflowerMom said: I'm thinking of talking to my doctor about just going off everything (especially the atenolol) and see what happens, while them closely monitoring everything. The odds of this being the issue versus the other stuff is pretty dang low. 1 2 Quote Link to comment Share on other sites More sharing options...
DreamerGirl Posted November 2, 2021 Share Posted November 2, 2021 @WildflowerMom I don't have the knowledge to contribute but wishes and prayers that you will get this figured out and find relief. 2 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted November 2, 2021 Share Posted November 2, 2021 The feeling done/depression/etc are likely symptoms in and of themselves. Please don't let that keep you from getting the care you need. Please get in with the Rhumatologist. 3 1 Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted November 2, 2021 Share Posted November 2, 2021 Thinking of you and sending lots of good thoughts. I hope they come up with an idea of what is going on soon. 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 2, 2021 Author Share Posted November 2, 2021 Thanks y'all. I feel like total crap right now, like the flu or something. I'm thinking it's a fibro flare, but who the heck knows anymore. I have an MRI next week just to rule out MS (neurologist scheduled it), mammogram the following week. Hopefully at some point I'll get to see the rheumy. Lumps are getting bigger in my arm, spreading up my vein today. At least it's not cancer or a blood clot. 🤷🏻♀️ 6 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted November 2, 2021 Share Posted November 2, 2021 2 minutes ago, WildflowerMom said: Thanks y'all. I feel like total crap right now, like the flu or something. I'm thinking it's a fibro flare, but who the heck knows anymore. I have an MRI next week just to rule out MS (neurologist scheduled it), mammogram the following week. Hopefully at some point I'll get to see the rheumy. Lumps are getting bigger in my arm, spreading up my vein today. At least it's not cancer or a blood clot. 🤷🏻♀️ This is pretty normal in the autoimmune world. Inflammation causes fatigue and for many it also causes mood issues (specifically depression). The rheumy, when you get in, will ask if you run a fever with your flares. You might check your temperature. I usually run 99-100F during a flare....more on the 99 end with my normal baseline temperature riding two degrees below that. Hope this flare is short-lived and you feel better soon! 1 Quote Link to comment Share on other sites More sharing options...
MercyA Posted November 2, 2021 Share Posted November 2, 2021 I'm so sorry, @WildflowerMom. Praying for you! 1 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 2, 2021 Author Share Posted November 2, 2021 11 minutes ago, prairiewindmomma said: This is pretty normal in the autoimmune world. Inflammation causes fatigue and for many it also causes mood issues (specifically depression). The rheumy, when you get in, will ask if you run a fever with your flares. You might check your temperature. I usually run 99-100F during a flare....more on the 99 end with my normal baseline temperature riding two degrees below that. Hope this flare is short-lived and you feel better soon! I always run a fever with my flares. Thank you for mentioning that. It's nice to have validation, you know? 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 3, 2021 Share Posted November 3, 2021 1 hour ago, WildflowerMom said: Thanks y'all. I feel like total crap right now, like the flu or something. I'm thinking it's a fibro flare, but who the heck knows anymore. I have an MRI next week just to rule out MS (neurologist scheduled it), mammogram the following week. Hopefully at some point I'll get to see the rheumy. Lumps are getting bigger in my arm, spreading up my vein today. At least it's not cancer or a blood clot. 🤷🏻♀️ Lumps go with dermatomyositis. (I am persistent, lol!) My friend with this has flares that make her feel like she has the flu, and she often runs a fever. You might keep a temperature log to take to the doctor. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted November 3, 2021 Share Posted November 3, 2021 This seems like what you have going on, the question is why. https://www.webmd.com/dvt/phlebitis 1 Quote Link to comment Share on other sites More sharing options...
WildflowerMom Posted November 3, 2021 Author Share Posted November 3, 2021 I think it’s considered migratory vasculitis, meaning it’s in both arms instead of one. Quote Link to comment Share on other sites More sharing options...
kbutton Posted November 3, 2021 Share Posted November 3, 2021 22 minutes ago, ktgrok said: This seems like what you have going on, the question is why. https://www.webmd.com/dvt/phlebitis If so, seeing a vascular specialist might be in order. 1 Quote Link to comment Share on other sites More sharing options...
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