I am so weak. It started at work on thursday. It was typing and my fingers ached so bad and my arms felt like they couldn't hold me hands up to the keyboard. I actually just had to stop. I got my kids from their grandparents and by the time I got home my body felt like it had gone been crushed by a steam roller. I couldn't support my weight. Even lying in bed - no matter what position every muscle, joint, bone ached. I didn't even have the energy to lift my hands to my mouth to eat or drink. When i do try my arms scream like they do when you've worked out to hard. Like they have no oxygen. Know what I mean? I get shakey and my hands go numb. My mouth is so dry. I had to have my mom come get the kids. I never do that. Ever. I just didn't know what to do. I have to stop now. I'll write more later. need to rest...
Oh, Cassie, I'm so sorry you're feeling so poorly. That type of body fatigue as well as heart palpitations is what sent me to the doctor the first time! I understand your pain. I hope someone much smarter than me about this writes you soon. I just wanted you to know I'm here for you. Kathy
I am not a doctor - by far. However I experience extreme fatigue on a daily basis. In my opinion what you are describing could be going over the top of extreme fatigue to complete extreme exhaustion. There are several concerns here, not the least that you cannot support your own weight and that your hands are going numb and your mouth is dry. I'm guessing that like the rest of us it is HOT where you are. I wouldn't dare try to diagnose you, but these can be symptoms of heat exhaustion or really any one of many things.
I would recommend that you go to the emergency room as quickly as you can. Or if your doctor is open on Saturday that you call him immediately. It is what I would do if I were you and that is all I can really tell you - what I would do in your case. I'm guessing that at the least you will need fluids.
If someone really disagrees with me - please say so. I truly think 911 is the best course of action here.
It does sound more than the usual fatigue that goes with our illness. It is better to be safe than sorry. But if you have never experience this before, I would check on it right away also! I think Draginfli gave sound advice.
Until you undertand what is a "normal" flare for you, don't take unneccesary risks. I will pray for you. I remember reading on medicine side effects precaution sheets, to seek help if this type of thing happens to you.
Cassie - please let us know how you are as soon as you sign back on.
I'm very worried about you and I know others are as well. Faye mentioned that this might just be a time where you'll be getting used to normal flares, but that also we shouldn't take unnecessary risks. Also that it is best to be safe than sorry.
Ang, I'm glad you wrote to Cassie again. I'm worried about her too. Cassie, I'm hoping you're either sleeping or at the doctor. Let us know how you are. Kathy
Draginfli said:
Cassie - please let us know how you are as soon as you sign back on.
I'm very worried about you and I know others are as well. Faye mentioned that this might just be a time where you'll be getting used to normal flares, but that also we shouldn't take unnecessary risks. Also that it is best to be safe than sorry.
find out soon as you can by visiting a remotologist and neprologist before it gets out of hand , rest now my friend and feel free when you are up to it to vent .
Sounds like I feel when I have a flare up.. The heat makes my symptoms worse. If it continues you should call your Rheumatologist. I always end up having to increase meds when this happens. Feel better soon
I feel that way too and feel if I push myself to do much I will go into PSVT (very fast heart rate) which I did the other day. I figured this was due to my blood sugar swings....is this a Lupus symptom. My goodness these symptoms all run together and interlink. Much of the time lately I feel like I have the full blown flu, body aches, headache, joint pain even skin and teeth pain. I've gained about 30 pounds since this started getting bad in 2006--10lbs of it in the past few months when I upped my Prednisone and had to up my Synthroid. I can tell people look at me thinking how lazy I am...but I don't want to be. I'd rather be out playing in the sun--hiking and kayaking like I used to. Now the pain is so overwhelming I can't sleep more than a couple hours at a time and much activity gives me palp and the total muscle weakness you describe (like when I was anemic). I'm putting off starting the new med for Lupus because I have follow up cardiac stress test next week and am afraid of the side effects and not tolerating the test. Is there a day I can expect to start feeling better?
Cassie...having this and small children must be near impossible for you. Can you get in home help? Grandma stay with you while you are feeling this bad? Is it possible you have diabetes? Some of the symptoms sound like low Blood sugar or anemia? Please have these checked...thyroid as well. Take Care and allow yourself to rest (I know the mommy in us have a hard time with that).
Kadeeeee said:
Oh, Cassie, I'm so sorry you're feeling so poorly. That type of body fatigue as well as heart palpitations is what sent me to the doctor the first time! I understand your pain. I hope someone much smarter than me about this writes you soon. I just wanted you to know I'm here for you. Kathy
I have been feeling extreme exhaustion too, last week wasn't to bad because i was on vacation, I returned to work saturday and forgot my pain meds, it was difficult working through the 8hrs but by the grace of God, i made it. The heat here in north florida is unbearble, I avoid going out as much as possible. I hurt and ache all over all the time but i've to keep going. I went to my pain Doc friday, what your pain level today, 8 i tell her but the heat make it feel much worst. I have been living at 8 level pain the last couple of months. I don't see it improving unless the heatwave breaks.Well if you feel worst call us. Whatever that means. My primary wants me to take predisone for swelling because i can't take asprin or anything related to asprin. I told him I didn't want to take it becase I didn't like how it makes me feel or the weigth gain or the wild mood swings. He tells me it's a low dosage but unless I am having a major flare I refuse to take it. The best thing you can do is rest and see your Doc asap,asia64
It's easy to feel frustrated and frightened when we try to do something and just don't feel good. It's so hard especially with children. You are in my thoughts.
This was hard for me to accept. If I have one day of normal (outing, shopping, cleaning house, movie), it takes me 2-3 days to recover. On those days I ache as if I had a really bad case of the flu, even my fingernails hurt. I hate taking hydrocodone and tylenol (Norco) but have to. I get depressed after the heavy pain meds. "Extended release tylenol" (over-the counter) really helps. It's supposed to last 8 hours, but for me it only lasts five or six. I'm only allowed two recommended doses. I can't take NSAIDs (ibuprofen, aspirin, etc.) because my creatinine (kidney filtering function) level is high.
Just coming out of one of the spells today. Got to wash the dogs and play with them. However, this evening I am beginning to ache.
My therapist wants me to try using guided imagery to help deal with the pain. Gonna try tomorrow.
Tell your rheumatologist. Sometimes the docs really can help.
It will become easier to handle. One day at a time.
So very sorry you had to go through this. I hope that you will contact your Doctor and let him know what happened, he may want to see you. My prayers are with you tonight. Please try to be as well, and as young, and happy as you can.
Oh THANK YOU! I can’t tell you all how deeply touched I am. What an absolutely wonderful group of people you are! I just joined this group a little over a week ago and you treat me like family. God bless you all!
Well, today I am functional. I have no idea what that was. If it was a flare it wasn’t like any I have ever had. Although I should have gone to the doctor I was honestly too weak to even do that. The thought of sitting in the waiting room for hours and then all the deer in the headlight looks once I got back, followed by MRI and CT and spinal tap, all coming back normal, and then the doctor shrugging his shoulders, not sure, giving me a Rx for an antibiotic I don’t need followed by" go see your dr Monday". Been there. Done that. I called my friend, she’s an RN, she checked my BP, pulse, temp, reflexes, went over my prescriptions. She of course reminded me that she works in a fertility clinic… But I actually think she may have stumbled onto something. My Rx for pristiq is 200 mg. I just had it refilled last week and the pharmacy gave me 100 mg. My symptoms don’t exactly match withdrawal but with all the other health problems it may be that the decrease was enough to make me feel this way. Plus I started nuvigil last week. All I know is today I am up and about. A limitless weak still. But soooo much better. My pain is where it usually is. I am not sure what to do about my pristiq. I could take two pills I guess. But I have actually been wanted off this wicked medicine. Maybe now is the time.
Again. Thanks you all. I will call my doctor Monday. Until then I will take it easy. I can’t wait to catch up on everyone’s posts. God bless.
You guys rock!!
Cassie
PS
I have my babies back home with me. Man I missed them. Unfortunately I neglected my beautiful flowers and lost just about all of them to the Oklahoma heat. Boohoo.
This is great news! I've been worried! In suggesting that you go to the ER I realize that getting myself to go there is like pulling teeth!!! I am VERY glad that you have a friend who is a nurse though and asked her to come take your vitals.
Flares actually do feel just like what you described, but what you described can also be caused by heat stroke, heat exhaustion or a slew of other things and we sure can't diagnose that over the internet. The sudden decrease in a medication like Pristiq could definitely cause those symptoms!
I'm glad that you will see your doc on Monday - even MORE glad that your babies are back home with you! Now ya'll can have fun planting NEW flowers all together!! :)
Cassie, I'm so glad to see your message here this morning and that you're feeling better! Needless to say, you are part of our family now. I feel a song come on, were 'totally devoted to you'! hehe. Have fun with your babies. Kathy
Lovely to hear your feeling better and got your children back with you but you still need to see your doctor because like ANG said heat can be an issue for lupus suffers and then there's flare's but what you was describing was going beyound it, more to a state of severe muscle wastage/MS what suffers of those issues get or when someones recovering from paralization and i definitely know what those are both like.
I know you have Lupus but is there anything else connected with it as your speacialist said from blood tests you've had?
Thanks for the update and letting us know you are OK. The main thing is that you did get medical help from your RN friend which is what you needed! I too have had some very weird things happen to me and my husband has begged me to go to the ER. I hear you! Not my favorite thing to do for sure for all the reasons you mentioned.
With your mom's ready help, you are blessed! This is the first year I have not been able to nurture my flowers and have had to let them go - painful but I can no longer do it. My stragedy is to plant some that will be able to take care of themselves.....actually my hubby will do it for me (the planting).
Trust you will rest today and enjoy your family. As you can see, you are not alone in your journey and we care! I am sooooooo thankful for our lupus family!
Cassie , Cassie, that's is the per-pain of LUPUS !! I started the same way!! Now it's like the pain happens only when i over due it !!!! I find doing hand excrises helps when they go numb but nothing really helps. Yes it hurts so bad , all i want to do is go to sleep , and pray that it goes away when i wake up-smile. Try to rest as much as you can !!!!....Beverly L.