View Full Version : New rash and new pain along with the old....Should I worry?
09-04-2007, 09:28 PM
Hey, Haven't posted forever but hoping someone can help me. I have been diagnosed for over 13 years and have had all the usual rashes controlled with immune supressants. I have recently gone through a divorce and with 3 beautiful children and not being able to just walk away from their father my stress levels are through the roof. 3 of the last 5 days I have been in bed for major fatigue, pain all over and neuropathy from head to toe. I thought I was breaking out in hives again but they are different. They are limited as of now to my fore arms. I had hives years ago for 4 months straight but this is different. And if I had to compare them to something they seem to have the same characteristics as when my children had neonatal lupus and had the racoon face rash as the anti bodies left their little systems. I have had some pretty new major pain that is coming from inside that is hard to explain, but I just can't keep on top of the pain and fatigue. I know that stress is a huge enemy of mine but I don't know how to let go of the stress that my ex is causing. He puts the children in the middle I know as a punnishment to me but it is them who suffer and that I can't bare to see. I know their are others out there who have gone through this stress and I would so appreciate any advice they could give and would also love to hear if anyone has this type of rash and knows what it is, and if I should be overly worrysome about it. It is a new symptom and those I usually am more worried about. Thank you for your support in advance. Michelle
09-05-2007, 10:01 AM
Yes, stress can play a major role in causing new symptoms as well as worsening of old symptoms and throwing us into a major flare. When my daughter was ill and shortly before she passed, my doctors realized that I was under tremendous stress and took aggressive action (with reference to medication, referring me to a therapist, giving me off-work orders etc.) to help to curtail the detrimental results of stress. I tell you this to say that it might be helpful for you to let your doctor know about the amount of stress that you are under, tell him about your new symptoms and the worsening of your old symptoms. If he is a doctor who understands the correlation between stress and Lupus flares, he should immediately start to make changes in your medications, prescribe new medications and even write you a referral for therapy/counseling to help you through this very trying time.
During my therapy after the loss of my daughter, I learned that the stress caused by the loss of a marriage is equal to the stress caused by the loss of a loved one and is exponentially doubled for each child involved. So, I know that you are under a terrible amount of stress and you cannot handle all of this new stress and these new symptoms by yourself. Do not be afraid to ask for help from your doctors!
I will keep you in my prayers and hope that you are able to get some relief and some help!
Peace and Blessings
09-06-2007, 12:22 PM
I'm so glad you're rejoining the board! Many gentle hugs for you at this stressful time...
I'll echo everything Saysusie said - she is so wise!
If you are part of a faith community, maybe you can talk to your minister or someone else appropriate there about the stress and coping with it. Or if you are working, see if there is an EAP (employee assistance program) they are free to the individual and staffed with wonderful people who can help you work through the stress.
May the difficult times pass quickly, dear, and may the pain subside - know that we're here caring for you as well.
gentle hugs ~
09-06-2007, 03:48 PM
There a few ways to handle situations that cause stress, divert it, shelf it or we have to deal with it.
For minor things, I divert it with busy things. Read, clean, draw, write, help another...focus on one thing.
Things I have no control over..shelf it.
Larger than life things...deal with. Look at objectively. Weigh my options, make a plan and stick to it. The results will leave me feeling better.
How and what do I actually do. I weigh the pros and cons of the situation. Ask how important am I and how it will affect me, my life and how my decision will affect another. Make a plan to change and do it. Be mindful as the change is taking place, whether it is my body, heart or mind.
Being a Chrisitan and I do enjoy Buddhism also, the philsophy. Impermanence. Change is constant so treat all things with compassion, even ourselves. When we fall prey to "bad" things..lose our way I like to recall these words...
What is born will die,
What has been gathered will be dispersed,
What has been accumulated will be exhausted,
What has been built up will collapse,
And what has been high will be brought low.
The only thing we have is nowness, is now. Your nowness, you and your children, this very second...
Breathe, deep breaths in through the mouth and slowly exhale through your nose. Calm yourself. Thing of good things, a beach with the waves, a garden with the smells of gardenias, skiing on a sunny slope...let your mind to take you to a peaceful place when all seems so overwhelming.
You would be surprised how chanting a mantra and humming in a deep vibrating short hums calms the mind. Such as OM AH HUM VAJRA GURU PADMA SIDDHI HUM or OM AH HUNG BENZA GURU PEMA SIDDHI HUNG. Say it with a deep low humming over and over.
When you are ready take on that feeling of the divorce...turn it into self power. Seems hard, it is...but it will come. We fall, get depressed, have self loathe, feel anger...but with each fall in empowers us a bit more to move onto the next item we have to tend to.
This is your life, it was a gift to you and don't let anyone take it from you and make it theirs, especially the man who you are now divorced from.
Deflate the stress and I hope today you are closer to finding your way,
09-07-2007, 10:17 AM
Well Said and Beautifully said Oluwa :D
09-07-2007, 01:29 PM
Thank you Saysusie,
Sometimes I forget my life is a gift and forget to treat myself with compassion and those thoughts, words remind me when I have gotten lost.
Hope you are doing well today,
09-10-2007, 05:52 PM
I normally lurk a bit, haven't posted in awhile but that post about visualization and being in the now was just so moving. THANK YOU!! I always want to try to think that way but you just made is so much easier to try. Well said and well done!
09-11-2007, 04:46 AM
You are welcome. Mentally imaging and a quiet spot... I learned it from my Mum who used it through her journey through terminal cancer.
Feeling good is what hope for you today,
09-25-2007, 12:40 AM
I forgot that I do have another family here waiting for me, to not only share my joyous times, as well as my hard times. I have found the hives have calmed dosn so muc when my children spent time with their father, but came back when they got home. I don't want them to think it is them because it is not! I need to find my power like has been said but is easier said than done. My childen went to his girlfriend and her kids the first time and had a great time. That is what I want. However a schedule was set that my children wanted and I enforced that with their father for them. But with the fun time they had and a missunderstanding of the days changing for them to go up there every other weekend is not what they want. I have such a problem of not knowing what to say at the time it needs to be said (Brain Fog) And I I allow his demeaning and disrespect to render me hurt and powerless. I need to find strength, a new me, someone in control and strong, but lately I am sadly finding myself not wanting to do this anymore and that scares me. I love my children and don't know how do this, make decisions, the right way without putting them in the middle. They need to come first but I am losing myself. I am so open for some help and advice. Michelle
09-27-2007, 12:57 PM
Yep, Michelle..Easier said than done..but practice, practice and the benefits you will reap. And I bet the hives will disappear too.
Your children are the link to your husband, which indirectly your husband, the thought of him when they are on their way home... maybe triggering the hives.
Have you sought counseling to guide you, to use as a sound board? Primary Physician to test for possible clinic depression?
Maybe write your thoughts down, what you really want to say to him and read them outloud, in front of the mirror, over and louder till you feel the power...Ooooh I got the Power...wasn't that a song. I can hear the beat in my head. Then the next time you see him, they will flow with confidence...
This is where the practice, practice comes in. We can wish, hope and etc. You got the tools, mind, heart...you have the seeds..ideas, techniques, now make those strong towering Sunflowers, you.. grow.
Don't give anyone your power anymore. That is giving your spirit away to someone who could careless. Now stop it. Sometimes we treat strangers and friends better than we do ourselves. Be your own friend...and handle with yourself with care.
09-27-2007, 09:42 PM
Thank you again! Was definately having a bad day. I was introduced to a someone from a friend who has been through her share and is now teaching classes and seminars. She sounds so much like you and I am liking it. I think the first step was the hardest, (email with my feelings and terms to him) and for the first in a long time I felt the empowerment. I know what I want, am ready to go there, just not sure how to get there and the tools I need. But I am seeing the light at the end of the tunnel and I WILL make it. And......my hives have been MIA for the last 2 days. Along with the nerve pain :-) So thank you again for your words of encouragement and support and I hope the day finds you all happy and healthy. Michelle
09-28-2007, 07:23 AM
You have the tools. You just don't realize it.
Your heart, your feelings..let them be your guide.
Love for your children.
Love for yourself.
Hobbies and interests.
Maybe you feel you just don't know how to use them?
Find the things that ring true to you. To your heart. To who you are and want to be inside. Example be around people who bring out your best. Read books that coincide with your beliefs and follow the words. Modify your reactions..and that comes with practice for the words, and lifestyle to adhere. To become a way of life.
Example. I want more confidence, empowerment. Read books on how to empower yourself and follow the words to give that back to you. Practice, practice.
Take a dance class, free to be you. Attend a retreat for women. Volunteer. Do things you never thought you could, but only wished. Those things can bring about confidence.
See a doctor, maybe you are suffering from clinical depression, which comes and goes. Short term medicince can work wonders. You don't have to be on a pill for life. A few months can do the trick just to get you jump started on feeling whole...back into living life.
Divorce is a trying time. On the top list of the Most Stressful Life Changing Event List. Cut yourself some slack...understand the pain and move forward. Let that pain thrust you into being whole again. An individual.
My take..You are a child of God first. A life, your life... Second you are a mother. Third you are sister to your family and to all people of the world. Fourth you are a daughter. To me, that is my place in life ( though not a Mum). Your thoughts maybe different and you know what..That is okay..that is why we are individuals. We have the power to think for ourselves and believe in what we may. So, find who you are and take your spirit back.
Once you realize, and are aware that you want to be different, you don't want to hurt any more then it is only you who holds you back now.
Hugs..now go take on the day.
10-01-2007, 10:04 AM
Thank you, with all my heart thank you. Your words hit deep and are things I am so waiting to achieve. I know that stress plays such an imortant part in Lupus. I Just received SSI benefits, and am doing my best to know that I do deserve them as hard as it may seem at times to think that someone may need them more than I do. This way I am able to take the energy I have and use it for me so I can then in return have me to give to my children. I am taking 10 different meds a day and I'm sure as all have felt have wanted to toss them all out. I have tried to cut them back but have felt the effects. I don't want to be on them for ever, I know some are very necessary but I am afraid of long term what some are doing. Especially the pain meds. Have you or any of you found that when stress is more manageable, or you when you are not flaring up that you have been able to cut back on your meds, or is your Dr. wanting you to stay on them for a longer period of time before making changes?
Thank you for your patience and advice, I forget at times there are others who relate on a physical level that is so hard to explain. And thank you for making me feel welcome. Michelle
10-01-2007, 10:31 AM
You are very much welcome..
I and others too think of stopping the meds. Decreasing them on our own. Some found it wasn't a great idea and flared. I would seek out the opinion of your doctor before trying it.
I don't know if my words on depression and takling meds for a short duration was confusing. I was referring to anti-depressants, that if it's clinical depression they can be used short term. From my reads, they have new drugs out there that doesn't cause a stupor or weight gain.
Does your doctor run routine tests being on high risk medicine..to see what effects it is having on your body?
SSI isn't free money..you paid Uncle Sam too in many ways. You are just making an early withdraw under a different program. You are not taking from anyone, anyone who needs it more. That is why they have an application process. So don't fret about that.
Use this time and the money to find ways to manage your stress, your illness.
Plan your days...make a list, create a rountine...include nutrition, exercise, activities...what you would like to accomplish that day. Find things you and your children can do together.
I've read many wonderful ideas how families interact with the parent who has Lupus..check them out. Modification is key.
Did you do anything today to bring about your confidence, to find the strength you've always had and didn't know it? If yes, how are you feeling..if not...how are you feeling? Waiting doesn't bring them about, you have to make it, take it...it is all there for you. Reach.
Enjoy the day,
10-03-2007, 12:37 PM
I was on anti depressants a few years ago but we didn't seem to notice a difference. I don't wan't to sound like I am complaining but it is hard to do things. When the kids are in school I like to rest and have some "ME" time so I am ready for when they get home. Lately my nerve pain has really been acting up and pain meds don't touch the burning. It is hard to be patient and do things when the pain is so intense. I know that I do need to eat. Nothing sounds good very often. Do you know of quick foods or food supplements that are good for you and energy boosters? I know my dr draws blood every other visit and says they are ok. I don't know what exactly he is drawing for. I will ask on my next visit.
What I did do today was to email my ex with a list of my boundaries. I feel good, but a little nervous at the same time. I know I shouldn't care what his family thinks but at one time we were so close. And I did get my nails done which made me happy. Took my kids to their Dr apt and came home with such a stomache that I went to bed. I now i need to take one day at a time. Start being more active and eating more healthy. I need to challenge mself to just do it. Start off slow and do it. I have come a long way over the past year, and am ready to go even farther. :-)
Thank you again for your comments, Michelle
10-03-2007, 01:34 PM
Sounds like you are finding your way. No set pace or time. I know..it is hard and must be even harder with children. I have none..so I only know apart of what you are going through. We all fall into the hole, even me..even just as recent as last week. You will learn your way to get yourself out of the hole when you fall in. The hole really never gets covered or filled. We just learn how to retrieve the ladder quicker and get out and the other times we learn how to go around.
When people talk about their lives, their pain, sadness I never think of it as complaining. I say sharing...share...share..share.
On the anti-depressants, you never know there just might be a product out there to jump start yourself onto feeling whole inside. Sometimes prolong periods of depression can change us or lead us to acccepting things that we don't have to. We can get used to things even when they are wrong. Have you sought any counseling?
As long as you are being true to youself and your children..that is all that matters. I don't just mean literally speaking the truth in that sense. Just know what you need, want, what is real and don't compromise yourself, your integrity. So, worry not what another thinks.
Supplements, I would ask you doctor for any recommendations. I take a B-Complex, and Fish Oil.
When you say nerve pain, is that like in the feet and hands pain..and the burning is it from nerves or inflammation?
Eats, quick..For breakfast..
Whole grain toast with sliced cheese and piece of fruit.
Plain yogurt with crushed flax seed, fresh fruit and a dash of Splenda if needed.
A handful of chopped nuts over frozen sugar free yogurt.
Homemade rice pudding with fresh strawberry slices w/ juice and slightly frozen.
Half banana, berries blender-ed with milk and ice.
Sliced soft mozarella. Sliced tomatoes. Basil, fresh or dried, salt, pepper and drizzle with olive oil and crusty bread on the side or heck make it into a samwich.
Saute garlic cloves with olive oil then add fresh Spinach and toss till wilted.
Fish fillet...2:1 tablespoons of olive oil to cooking sherry or H20. Salt, pepper, cayenne pepper, garlic...bake.
Boneless chicken baked or even boiling a whole chicken is my favorite, with just salt.
Those are just ideas..if you like certain foods I can come up with a healthy quick dish for you. I am a self-proclaimed cook. One time I did want to be a reknown chef..that dream came and left. I have many shortcuts in how I prepare food. I learned as my pain increase to modify it up a bit.
Did your doctor suggest you to avoid sugar? Splenda is okay mine said.
And another key to feeling as well as we can get and lessen the fatigue would be to eat regularly, breakfast and snacks included. Lighter meals..five meals. Do you stretch daily..try that to start with too and while stretching focus on each muscle. Neck side to side..Shoulder blades drawn together as if touching your elbows behind your back. Legs flexed by moving foot up towards the shine and back towards the heel. Arm circles and full body stretches. You get the idea..
How is the tummy today?
Hugs...and don't forget to buy a bunch of flowers for you today...
10-03-2007, 10:52 PM
Feels like I found a new friend, and thank you for the pep talks and the smiles.
The nerve pain I get I can only describe as if someone put acid in a spray bottle and sprays it on, that or road rash from being dragged. It usually starts in my face then works to my arms, torso then legs. Sometimes to the point where my clothes hurt when I walk and hugs hurt. I am taking 300 mg of neurontin 10Xday. And my Dr wont up that anymore.
When we separated 2 years ago I lost 35 lbs in about 3-4 months. I used to love eating, now I get mad when my tummy growls and nothing sounds good. Prety silly huh. But when I am hungry...look out. I do eat sugar and havn't had a problem with it. I think I felt the best when I was going to a wellness chiropractor. I was drinking lots of water, on supplements and eating more. I am trying to get some money together to do that again.
As for the anti depressant, sometimes I think of it as ANOTHER pill and don't want to add that, I have also heard some pretty scarry stories, as well as ones that were so necessary.
I went to counseling as a couple, and then for a while longer after my ex stopped. I felt that I went as far with him as I could go. I had to feel out a lot of paperwork, self history and so forth when we started going, and the thought of taking that on again right now is overwhelming.
Tomorrow my mom is coming to stay over night with my kids so I can go to a wedding of my friends son. I am going a day early and staying in a motel so I don't have to wake up and leave by 6AM ..... ick! Don't much like mornings. I am excited to have this time and spend it with friends. Then when I come home it will be just be a day of work, which I cut hair so I get to talk to clients-friends, then my kids will come back from their dads on Sunday. So I am going to have a nice fun time and am looking forward to it.
Thank you so much for listening and helping. And my tummy is feeling better thank you. I must say I am feeling a little selfish although. I have done all the "sharing" while you have done the listening. How are you doing? I hope well and feeling good and as symptom free as possible.
Thank you for the hugs and I am sending some right back your way!
10-08-2007, 07:38 AM
How are you today? How was the wedding? Did you have a great weekend?
Ten Neurontin a day? Wow girl...is that considered to be excessive? Have you been taking that large dose for a long time or it it just for short time therapy? Any side effects?
Why my doctor advise to avoid sugar, forms of sugar and substitutes because it has been link to promote inflammation in joints and muscles in Lupus patients. Aspartame can be a trigger. Splenda can be eaten.
By your post it sounds like things have left a bitter taste with you. I know that taste too. But sometimes we have to swallow it down with changing our thoughts about it to get better. Sometimes that gives us a sense of control. I am going to do it.
I know the lack of enthusiasm you feel. I dislike going to doctors, from being tested, poked, x-rayed, lack of symptoms for proper treatment and diagnoses...unfortunately we have to keep going in order to find our wellness. I just scheduled an appointment for tomorrow to see my PD because my chest and back pain not being resolved with current medication prescribed by Rheumatologist. I am going to request a chest x-ray and MRI. I dread it, but I want to be better than I am.
So, I guess we have to ask ourselves how well do we want to be...how well do you want to be? Enough to make another appointment, enough to fill our more paper work, enough to swallow another pill? I am. Maybe have your doctor reevaluate all your prescriptions, omit or change some of them up.
I am going to go dragging my feet tomorrow, but hey what if, what if it makes me well. That is what propels me forward. Hope.
Counselors, they all have different methods to counsel. Maybe there is one out there that can take you to the point you need to be at.
Me, today I am doing alright. I have my mental overwhelming days, day I feel flat…angry, happy, my normal, depressed from pain…lonesome my husband travels...days I have great belly laughs. I am finding my way, not to worry so much about what hasn’t happened yet. Day by day. Today is my day and I am doing alright.
I find when I talk with another who has woes like me, more than me or less…in any case it helps me to heal mentally and find answers that help me physically too.
Sometimes it is important to be understood and I think that is why we all come here first. To be understood then we become understanding. Understanding of what we feel and also come to understand those who interact with us in our Lupus lives. It affects all, not just us.
How do you take care of your hair with all these medications? Any advice? Mine is breaking, the shaft is thinning, drying. I just went to a quick cut shop and had five inches cut off. My hair grows fast, but lately my hair is getting ugly. It was nice a several months back...seems like I was on to a good hair care regime..but don't know what happened as of late. Cotton candy. I do dye my hair with a low peroxide solution. 20%, sometimes 10%. Once a week I may blow dry my hair and hot curl it...so I figure must be the pills...
Thank you for the hugs.
10-08-2007, 11:48 AM
Well hello there,
I hope yur dr apt and tests went well and that you are not dragging your feet today. I hope your pain has subsided. Is your pain localized in your chest, or is the pain in your back down the sides or more in the middle? Just went through a whole lot of that stuff and actually found out it was my galbladder and hysterectomy. It took a long time to find that. I hope all is well.
I had a wonderful time I must say, even sat in the hot tub for a bit. BUt it was short lived when I came home and had arguements with my ex about when the kids would be home and my daughter didn't finish her homework. I was in tears most of the day and so frusterated. I am finally taking a stand and he thinks I am just on a power control. I just want whats best for the kids, that is really it. I know I shouldn't care about the cuts he makes to me but they hurt and sometimes he can make a good arguement. There are times I feel empowered, and other times I am just hanging on. Don't like it.
I have been taking that much neurontin for almost 2 years, no side effects. Last month I went in and he put me back on plaquinil, and prednisone for a short boost. If things don't pick up next month he wants to raise my cellcept. Speaking of hair loss!!!!! I think it is from the plaquinil. I have lost my hair before and just got it back so I understand that freaking out point. Mine is falling out by the handfulls right now and I am thinking of stopping it. Seems you are doing the right things with your hair. When you color it make sure if you are going darker to use the 20 vol on your roots it there is grey, other wise use 10 vol. Put on your roots and then for the last 10 min take the color that is left andmix it half with water and shampoo and shampoo it in your hair for the last 10 min. I would make sure you are using a professional shampoo, that really does make a difference. Sounds like you are taking care of it and styling it as little as possible. I hope that helps.
My goal today is to try to figure out a visitation plan, and if that doesn't work I am going to have to hand it over to the attorney because I can't handle the stress. What hurts is he knows that, but plays it against me.
Wish me luck, wish you luck, and I hope you are feeling better and having a wonderful hair day :-)
10-08-2007, 12:39 PM
My appointment is tomorrow, I’ll keep you posted.
Some people they know your vulnerable points and use them to turn you over… turn you inside and out. Shame on them, eh? When the ex does that, count to ten in your head, if your still upset count to 100 and say “Now with that being said and you feeling better can we return to the (topic of discussion) like two adults?”. And if he continues, say, “I can wait another day for when you are ready. Call me when you are.” Or..say..”My lawyer is better at handling these things; I will have him give you a call.” When we shut down the conversation this way, really they have nothing more to say. If he still wants to be disrespectful I would say, “You are going to have to argue by yourself.” Just try not to engage in such behavior. As I am sure his goal is to have you spar verbally :agrue: with him, so he feel he has defeated you. He is only good at arguing as much as you allow him to be. Key to empowerment also is to talk with respect, thus saving your dignity and walk away. Walking away isn’t defeating but just knowing you didn’t disrespect yourself by engaging him. Sometimes power is derived from saying nothing too.
It is hard to find the medium between being passive and aggressive. We stumble, we find our medium. You will find your way. Try different approaches to tackle the discussion and you can see what will work by his demeanor when he responds. Just remember to be respectful despite him being not. It really isn’t a battle, so your goal shouldn’t be to defeat him either, but seek a resolution a compromise. When we behave like the other we lose a bit of our dignity and our respect for ourselves.
Now that you know he does it to hurt you, to cause you stress let him know it doesn’t hurt anymore by changing the way you respond to him.
The goal isn’t to be like, nor do you have to like him but to find a middle ground of communication for the sake of the children. Tell him that too.
If he is way beyond approach, I wouldn’t tackle it anymore, just let your lawyer handle it.
For your daughter, maybe have a chat with her about the importance of homework and the honor system of entrusting her to complete it while at her fathers. Ask why she didn’t in a concern way and explain the importance of completing it. How old is she?
On the hair, I do the method you instructed...but on my ends I leave it on for only five minutes. I like a lot of the professional products but I am allergic to them. Dimethicone is the culprit. I have only found Biolage and Nexxus that have few that do not make my scalp itch. Yea, I looked liked I had a halo in the light when my hair fell out in February. Now it just breaks splits and breaks. Maybe throw a gob of mayo on the mop.
Here’s luck, hope, faith and prayers for you,
10-18-2007, 04:19 AM
How goes life? New and improved? Just wondering how you are..haven't seen you around. Hoping it is because all is good. Is it?
Hope today is even better than the one before,