View Full Version : Hello from California
09-25-2007, 01:54 PM
I wanted to say hi and thank everyone for discussing issues that effect most or all of us at one time or another in fighting these diseases. I was diagnosed with Lupus almost 2 years ago; and most recently diagnosed with Fibromyalgia. :?
09-25-2007, 08:02 PM
Welcome...I ditto your thanks. Thank you to Saysusie and Conrad who made this forum available for us to come to when we need information, a soft place to be heard and a friend who knows, even if we are just words on a screen you can feel the concern and care from us all.
I have Lupus, Sjorgrens Syndrome...achy and dry.
I hope you come here often...wonderful people from all over. Near or far, someone will always be here.
Here's to finding our wellness,
09-26-2007, 07:44 AM
Thank you Oluwa. I have a friend who has Lupus, and Sjorgrens Syndrome. I am sorry to hear you have either.
I have been reading some of the info, which has been very imformative. The people on the board are wonderful, far and near.
Again, thank you for the welcome; and lets all pray for a cure for auto-immune diseases.
09-26-2007, 12:06 PM
09-29-2007, 02:05 PM
Hi Faith :lol:
Welcome to our family. What part of California are you from? I am in Southern California...San Bernardino County.
As Oluwa has shared with you, there are many people here who want only to help you in any way that they can. You will always find someone here when you are in need!
Peace and Blessings
09-30-2007, 02:01 AM
Thank you for the warm welcome. I am between Central and Southern California. I visit Los Angeles every couple of months. The drive, traffic delays, and anxiety take a toll.
Oluwa shared with me; and welcomed me warmly. It's good to share experiences and also help someone at the same time. It's a great support group.
09-30-2007, 10:21 AM
I was surfing the site and noticed you had mentioned your teeth hurting, and itching an invisible rash. It's frustrating, my legs will itch at times; but there is no rash.
I had never had my teeth hurt until Friday evening when I was trying to eat green beans and it really hurt; threw them out. I can only attribute the teeth issue to a really bad cold/respiratory infection that I have been fighting lately though why they would hurt now, I have no idea. Immune system very low possibly? Experiencing more fibro myalgias and joint pain more than usual.
Another quick question, anyone ever woken up from a dead sleep to pain singing "Good Morning?" My whole right calf felt like tight rubber bands as if someone was physically pulling them. Calf was tight, tried to move & couldn't move because it increaseed pain; then the painful rolling spasms began.
I started panting in my half-sleep/pain, lol, praying it would go away and I could continue sleeping. I must have whined in my sleep/panting, my hubby woke up within a few minutes and asked what was wrong. I told him needed to massage my lower leg, but I couldn't move it. Bless him, he massaged it and it eventually went away.
I have never heard any of the itching and teeth hurting symptoms belonging to Lupus or Fibromyalgia. It's bizarre to say the least. Well, good news is I lost a couple more pounds. I really didn't need those green beans anyway. lol.
Everyday is definately an adventure. Thank you for the support.
09-30-2007, 11:41 AM
i wake most days to pain in joints or low back mostly
some nights i sleep only two or three hours
with me i find that when im static ie not moveing it begins to hurt every where
so i try to keep moveing as much as i can anyway lol
no real fix that i know of other than pain killers :cry:
its not as bad as it sounds once you get used to it the pain thing that is
oh for me warm baths help or heating pads on knees hips and shoulders with a warm wet wash cloth
09-30-2007, 01:32 PM
Welcome to the board. I have always wanted to visit Colorado.
I am somewhat used to the joint pain, as used to it as I guess you can get and rarely take painkillers. I love taking long hot showers; it seems to help the joints. When it rains, I feel like I am walking on broken ankles. I getting used to it and thank goodness it doesn't rain too much. lol. I frequently adjust my stride due to hip joint pain; so I look somewhat normal. Are you bothered by change in temperatures?
It's ironic how differently fibro and joint pain differ. I am sure as time goes by; I will hopefully become used to the fibro pain.
Like you, I have had mostly joint pain with Lupus and lower back pain, hip, elbow and shoulders; lower back especially when driving out of town for an apptmt. or for more than 30 mins. I am now feeling upper back and neck pain. I have noticed if I stay in the same position for more than 10-30 mins, I really pay for it. I used to carry a portable camp chair to my kids games in order to sit and watch; I now take a beach towell.
I think you are right in that you have to keep moving around. I didn't mean to sound wimpy about calf pain, if I did, I apologize. It seems like we have to have a happy medium; ie not sit too long and not be on your feet too long. I had never experienced rolling spasms of rubberband pain in the calves before and to that intensity. Was just curuious if anyone else had.
I will try the heating pad; thanks for the suggestion.
10-01-2007, 05:55 AM
hey i hope i didnt make you feel bad all pain sucks and i dont think any of us is wimpy haveing to deal with our lot in life so please dont take anything i have said that way because i didnt mean it that way
i think the best we can do is try to stay positve and take each day one at a time love the people that are in our lives and our selves because at the end of the day that is what is really important
hang in there and know that you are not alone there is a bunch of us out there :)
10-01-2007, 06:02 AM
hey again yes temp changes and weather changes both get to me i used to love the heat but now if its above 70 its to hot or if its below 30 its to cold but if its to cold i can just ad more clotheing
10-01-2007, 06:59 AM
How are you this day? Any spasms last night?
Indeed my did teeth hurt and still do from time to time. I don't have any sinus problems, so I was thinking perhaps I grind my teeth. I do have Sjogren's Syndrome so maybe my sinus cavity is dry but it feels fine.
The invisible rash, do you take Ultracet, Tramadol..things like Percocet? Sonya and I hadn't really figured it out, except perhaps a reaction to the meds. Taking Claritin at night helps for me. My doctor said he didn't think it was Ultracet but Lupus. It happens when I have to take many Ultracet akaTramadol. Prior it use to itch after one, then two..now it takes three for me to start chancing the itch around. Frankly, I think it is my medicine.
Spasms in the calf...have you been taking in enough fluids? Are you dosing with a diuretic? For me, with spasms in the calf, the more I'd moved them or flexed them the more they would hurt. Massage, gentle works for me too.
I use to get so many spasms before and after my lumbar surgeries, in the whole leg, thigh, foot and calf. Nerve thing. In the shower, while sitting. Hard taunt. Now, I get them in the same leg but when I am dehydrated or the muscle is fatigued..so maybe that could be it for you. Are you dieting? Ensure you get adequate water and apple juice too if you don't care for H20.
One time I was visiting my brother, my leg decided it was going to turn on me right while I was sitting in the livingroom. Up it went, tight and hard, contorting. I became a mess, I began to cry..it wouldn't let go. My brother came in and said "well, don't you look pretty" and started to massge it. Through the tears I laughed too...mentally imaging what I must have looked like to him. Pretty, pretty darn ugly like the girl from the Exorcist....g-r-r-r-r-r.
You aren't whining and don't apologize to anyone for your pain or sharing it. Especially not here. Our pain experiences are different, there are no heroes or whimps. We know the pain is real.
I find when I hurt all over, just getting bumped can feel like being whacked with a hammer. The pain experience changes each day because of our mental state I believe. Tired, depressed, gun-ho, feeling together, feeling apart..can make or break a day with pain. And pain can change our whole day too.
One doesn't have to get use to the pain and be a hero till you mentally break.. Find ways to manage it..through meditation, yoga, just stretching, cold packs, rest, heating pads, water, medicine, quiet time or focus on something or attend a pain management class to learn a technique.
I hope today will be one of those good days we get with these, these....illnesses.
10-01-2007, 10:42 PM
Hi Oluwa & Terry,
I didn't want to sound as if I was whining as no one really knows me as I am new. I usually get angry at pain, not whine. My apologies if I sounded whiney. I loved the idea of the heating pad. I tried a fancy version from A------ that is similar to Icy Hot. I envisioned myself jumping into a bathtub of ice followed by bathing in Bath & Bodyworks for 2 hours. My daughter said I smelled of mosquito spray; and I just knew I was glowing "red" under my pjs. lol.
No spasms last night. Teeth aren't hurting today either; I do have sinuses but I don't grind my teeth. I don't take any Ultracet, Tramadol or Percocet. I do have the itch from time to time (3x weekly) on my legs. No rash, nada.
I am not dieting, and do take Dandellion to drop water retention from time to time. I hadn't taken any when the calf pain began. Though I have been trying to walk on a regular basis everyday. The muscle was probably fatigued. I hadn't thought of that. I can sympathize about the pain; and I am sure you didn't look like the exorist. lol
I can get bumped playfully by my son and feel like I was whacked with a hammer. I really hate pain; and will not allow it to take over my life. I carried a lite camp chair in a bag with the rope slung over my shoulder 2 Sundays ago to watch my son's game. After the game, I had to stop several times to rest. I was ticked; by the time I arrived at my car; it was survival of the fittest. I wasn't angry but on a mission; though I felt defeated because I was just praying to get in the car & drive home at that point. never again; no chairs; maybe a beach towel. I could get real creative and wear a bathing suit over my uv clothes. lol. We have to have a sense of humor.
How are you doing Oluwa & Terry? I hope you both had better days today. It has been good talking with you both. Remember, no icy hot or you might glow as I did; and it definately does not smell like perfume. lol
10-02-2007, 10:11 AM
Oh, I didn't think you were whining at all. If you are a whiner, hells..I am too. I was concern when you feel you need to apologize for sharing your pain.
It makes me angry too, then I cry, go to sleep and feel all better...then I can go through that cycle many times in a month...even many times in a day. Up, down...in, out...normal, abnormal..Simply maddening.
I do get the ugly cry. Sometimes when I am crying, seems like have been doing that alot lately. I look at me in the mirror because I know I look so blotchy, a face with a gaping distorted hole. It makes me laugh, changing my mood.
My day, just putzing about...feelings are flat, just strolling about the house.
10-02-2007, 02:10 PM
I started thinking there are a lot of people that are worse off than myself. I agree with you about the cycle; mine is either anger or quiet defeat. I do cry sometimes; I think it is because I feel like I have no control whatsoever over the pain and sheer frustration. I also get upset because I don't want this illness to take over my life and consume me either. There has to be a happy medium; I am trying to find it. It's a challenge when you are living with it every day; sometimes I don't think other loved ones truly understand.
I am sorry to hear you have been crying more so lately. Do you want to talk about it? I am a good listener.
I slept seven hours last night (compared to 3 hours the night prior); I am just tired with no energy. In fact I am thinking of taking a quick cap nap before I pick up the kiddos from school.
I hope you feel better and, again, if you need to talk, I am here.
10-03-2007, 04:06 PM
My crying jag is over. The pain had me down, my husband in the sky..always traveling. Alone..a bit upset with my doctor..ah a myriad of things, but I've regrouped. One by one, worked them out..till the next time.
Those moods come in waves. In and out..some like tsunami, some a like ripple and others like a slow creeping in tide. Pain is my worst enemy..it leads me into the hole. Now, it is under new management. Protonix and Naproxen. I was having an whole upper body pain, back, neck, chest, spine and etc. Burning...
Upper back and chest pain you mention...could be many things from GERD, to pleurisy, pericarditis or all. I have the first two. I still have stabbing chest pain and spine pain. Maybe it pericarditis...or another herniated disk.
I've put off calling my primary provider...my rheumatologist seems to be a bit stumped. But he has given me that blank stare one too many times so I'm deciding whether to seek out this other doctor I have found.
I don't think love ones or anyone truly understands the pain, the anguish, the frustration this disease brings. I know when my Mum was facing terminal cancer, I didn't get it. Still to date I only understand what her pain, her fears were just a little bit. I did have great empathy, love, compassion for her during her battle. I was there for her..that is the best we can do for anyone who suffers. Help in the way we know how. Sometimes those ways may not seem the right way to someone who is suffering, but we still know we are loved, eh?
For me, I don't think I need to explain it to my family anymore..it isn't really important for them to know how bad I hurt, what it feels like. If I say things like I am not up to it today..I am okay, don't worry. Then they feel they are not helpess and in a sense I feel at ease too. Feeling helpless hurts their heart. No matter how I slice it or dice it, the pain, mental and physical is just that pain. They can only relate to as much pain as they have experienced...
I come here and share my pain...safe, without judgement. I hope you feel safe to be here too and maybe you might find out, this might be the only place you'll need to seek that type of understanding.
How was the sleep last night, clocked in 7 again? I sleep deeper now and longer too. Hope you have another night of some good zzzzzzzzz.
Hope tomorrow next light brings good things for you,