Things have been pretty good for me. No major fatigue, pain, etc. I was doing great. But now it’s starting to get warm again, and I’ve been trying to spend time outside and not he cooped up inside all the time. I haven’t been to the hospital for a while…but right now I’m in soooooo much pain (elbows, wrists, fingers, hips, knees) I can barely move without wincing. I can feel my pulse in my neck and chest…I’m pretty sure it’s way higher than normal. There have been times in the past week I have looked at my arms, legs, and neck and been able to see my muscles jerking uncontrollably. I have no clue what to do, I still haven’t been able to get in to see a Rheumy, and I’m still having issues with my Primary Care. Oh, and to top it all off, my family has pretty much disowned me and said I’m complaining about nothing too much.
This site is a good place to vent. I will keep you in prayer . Are you drinking enough water? Just a thought as dehydration can make heart/pulse rise. Just a thought...
I understand what you mean about family. At first diagnosis for me I had lots of sympathy and help and after years of the same problems people sort of just disappear. I think the only family that really understand is my husband and children because they live it with me. Everyone else looks at me and has the mentality that “you don’t look sick.” Hang in there. No two days are alike. Do you already have a rheumy or are you trying to get in for the first time? If you already have one and you are having trouble seeing them then you should consider a new one. I was fortunate to stumble upon a great one who responds quickly with my first try, but many people have noted they have gone through several before finding the one that really helps and is there for you.
Hello Jason,
Nice to hear off you :)....plus you going well for a while.
Jason warmth alone can kick this lot off, it does'nt have to be extreme but if your sitting in the open the warmth and sun can affect we.
Regarding your pulse racing, watch for dehydration which "Bobbie" stated.
The link below is about racing pulses with Lupus.
http://www.pulsediagnosis.com/SystemicLupusErythematosus-Pulse.htm
Sorry to hear you've not seen a rheumo yet when you could really do with it and regardng your family to me it's ignorance and as you know we've had a fare few discussions on here about family disowning's i truly just can't understand it.
My heart goes out to you Jason it really does.
((A large hug to you)) :)
I'm sorry you're in so much pain. I hope you can get in to see your rheumy soon and get some relief.
I feel like a lot of families go through that when someone's dealing with chronic pain. They don't live with it so they don't know just how bothersome it is and how we need to vent sometimes. Like Graveyardnerd said, you can always vent on this site and find the love and support you need during the hard times.
It’s the only way I complain…on here or twitter. Family … No way! Especially my kids, sorry to say. They are 31 and 33. Although son getting better.
My husband is my rock! Although he goes over board on restricting my activities. Drives me crazy . Even though I know it’s what I should do
Hi Izzy,
My hubby is the same mate and he's never changed in 12yrs :)
Izzy said:
My husband is my rock! Although he goes over board on restricting my activities. Drives me crazy . Even though I know it's what I should do
John, I am so sorry to hear that you, as well as others, have no close support system. My siblings all have chronic pain conditions and auto immune problems. I am the only one with lupus but we all are very supportive of each other. I do know that I am very lucky with this support. My husbands family too are very supportive and good and kind to me. I love them and always have too. So I always feel terrible when others don't have even a small portion of what I have. Rest assured you are in my thoughts and prayers. This group sure seems great about being there for each other and at least that is good for all of us.
Unfortunately those around us have NO CLUE how much pain we endure! This disease is awful not to mention weird! We can be fine one day and literally in bed the next. The inflammation from this disease can strike anywhere at any time wreaking havoc. You may want to check your blood pressure and call your PCP just to be sure you are okay. Sounds like you are in a flare. I am in one right now as well.
As far as your family goes, I used to email them pages from the lupus website and forward discussions with other lupus sufferers so they could see I am not crazy. However, this only works for people who will at least try to understand.
We Lupies are like an undiscovered object and its up to us to educate everyone about how bad this disease is. It’s not in your head! It is completely real and completely miserable at times!
I will keep you in my prayers that you can find some support.
I do sympathize with you Jason, it really sucks without the help of family. I glad you had the time of remission it does feel good when you have energy and can get out of the house. It has been a long time for me now. I pray that you will be well. We are here for you to talk or vent.
everyone is absolutely right about the dehydration. Make sure you drink enough, I have to remind myself as well. Make sure you use the good days to your advantage. It sucks I know to have to live with this disease, but try to live everyday to the fullest. I have lupus, sjogrens, antiphoslipid as well as a mean case of ptsd and mild case of hypochondria.. lol.. It's really bad for hypochondriac that actually has something wrong with them. I am always afraid that every ache and pain means a deadly blood clot... But everyday god grants new mercy, blessings. take care ...
We both seem to have a few symptoms in common prtyblk but like you mentioned dehydration is one thing nobody wants to let happen to them :)
prtyblk1 said:
everyone is absolutely right about the dehydration. Make sure you drink enough, I have to remind myself as well. Make sure you use the good days to your advantage. It sucks I know to have to live with this disease, but try to live everyday to the fullest. I have lupus, sjogrens, antiphoslipid as well as a mean case of ptsd and mild case of hypochondria.. lol.. It's really bad for hypochondriac that actually has something wrong with them. I am always afraid that every ache and pain means a deadly blood clot... But everyday god grants new mercy, blessings. take care ...
Dice, I am trying to get into the Rheumy for the first time. The one I’m waiting on an appt with comes highly recommended by some ppl I know and also by sites like ratemymd. It is definitely a hard battle and my insurance company isn’t making it easier at all. Each turn I take they put up a road block.
Tina, I do have high blood pressure. I have been on meds for the (currently lisinopril) for about 2 1/2 years. The biggest thing I’m working on with my PCP right now is my blood sugar. I am severely hypoglycemic and it’s been very hard to keep my glucose levels in check. Right now I have to test every 2 hours and the cost of test strips is killing me. I don’t even feel the needle prick anymore, but $40 a week in test strips hurts the wallet.
Tez, all I can say is you are awesome. Every time I post on here, and every other persons post I look at, you are ALWAYS there with encouragement! 