Hi everyone. I see the positive tone here and apologize in advance for the following.
I haven’t experienced a minute free of pain for more than a decade. As you all know, the level pf pain varies bit it is forever with me. My fatigue level can be low or insurmountable. When it is pn the rise cognitive fog joins the fun.
I am a field repair technician and work 50 to 70 hour weeks. Despite the toll on my health I feel truly lucky to be able to work so hard for my family’s support.
BUT…
For the past 2 months or so my seizures have become a nightly thing. They can last less than ten minutes or they can go on for over an hour. My seizures consist of extremely powerful contractions of my shoulders and arms. If I try to speak I loop my words over and over. The pain in my shoulders becomes exquisite (extreme fails to truly represent the level of pain) after 15 minutes or so and the looping makes my wife cry. I have teied to just carry on, even making dinner by timing my food prep actions between spasms and not attempting to speak.
It is jist getting to be too much. Monday I went through four separate seizures and, for the first time in a long t ime ii wanted to die.i feel like i am being broken by these things… Every night is just too much. Help…
It is true that you will see quite a bit of positive interaction on LWL. We are here to lift our friends/other members up and encourage them to keep on staying strong.
However, we are also here for each other in the way that we know what you are going though - even it hasn't happened to each of us exactly as it has for you. We may have exact symptoms or something just as bad, but different.
What I'm saying is, that it is very, very okay to make a posting by discussion or blog in which you vent or are frustrated with this disease. We all feel that way too!
Having said that - I also have much pain and extreme fatigue every day. I am in my bed at least 90 to 95% of every day. Basic grooming chores are difficult for me. Lately I've been on the computer a bit more, but I can go days and days without the energy to sign in. This group is a big motivator to push my energy to sign in. :)
What worries me for you are the seizures. Your profile shows that you are taking seizure medications. Yet, you are still having seizures. I thought that the medication was supposed to stop the seizures. Maybe there is a better med out there for you? Has you doctor offered an opinion on this? Perhaps he has thought about changing you seizure medication or adding a 2nd complementary seizure medication? This way maybe you'll get something that works to control that part of it. It sounds scary. I've only ever had minor seizures with Lupus - years ago. They were controlled with Neurontin.
I have much respect for you in continuing work at 60 to 70 hours per week! Please rest and take care of yourself when you can though!
Let us know how you are and what you decide to do about the seizures. I'm so sorry you are going through this, but we are here!
OH my god. I dont know what to say. I have never had anything like that happen to me. Are you on any medication for te seizures? Have you called your doctor and told him about this?
I want to cry with you. My heart goes out to you and your family. Certainly those of us here have had such times when we wondered if we had any more energy to hang on. Well this is the time to let us pray for strength for you and encourage you. It sounds as if you are pushing yourself to the limit as far as work...and beyond. Those with our illness are some of the strongest most perservering friends I have. One of the meds I was taking caused my seizures, and my pharmacist helped me with the discovery and helped me get off of it.
Please don't give in to your feelings....stay strong. Tomorrow is a new day with new hope. You are surrounded with prayer, a caring spirit, and hope for a better day. Please take some time to relax, to hold your wife's hand and reassure her together you will make in... I've heard it said.... The darkest hour is just before the daybreak! Thoughts and prayers will be for you all day...Stay stong and please keep in touch.
Hang in there! I understand how you are feeling about this nasty disease. When you can I suggest you see another doctor (specialist affiliated with a University Medical Center) to consult on your case. Sometimes another person can see alternatives that may work better for you. You and your family are in my prayers.
Hi Bruce, so sorry to hear how bad you're feeling. I agree with Lisa. I think you may be surprised how many alternatives there are. Attaching yourself to a Research Hospital may help give your body some relief. I'm thinking that will be my next step. Remember, your family does appreciate you and want you to take care of yourself.
I do not have a full Lupus diagnosis, but many of the symptoms, however I do have several other nasty Autoimmune diseases, fully diagnosed, please allow me to urge you to inform your Physician of this. I agree that there could be a better med out there for you.
You have to be your own best advocate, and speak up when things get out of hand, ask for more from the health care professionals, go to the ER if you have to, those Physicians have to be up on everything!
I wish you WELL very soon, you are surely a wonderful man and husband.
Working that many hrs a wk might be contributing to your symptoms. Sometimes it takes trials of different meds for seizures. I applaud you for working through these symptoms but cutting back your hrs might help get your symptoms under control. My husband took seizures for yrs & it took many yrs to find the right combination to keep his seizures under control. Hope this helps
You are stronger than you think. I know what you're are going, these pasth three mo.s have been very difficult to me. My pain level is 8 and the pain i've now is more intense, throbing, i hurt everywhere. I am depressed and i feel like giving up but i continue to fight. You must to continue to fight. Rest when you can and take care of yourself. we have to accept we are and let go of the people we use be. asia64
m so sorry to hear your struggeling so badly,,,I too have seizures,, but not that often any more,, and mainly whats called abscence seizures these days,, but your obviously a tough guy,, and doing your best to cope,, my thoughts are with you and your wife, xxxxxx
I know exactly how you are feeling when it comes to the constant pain everyday. I often get frustrated when people ask me if " I'm feeling better ", when the reality is you never really feel better, you just manage. Sometimes I think of my life and I feel really down about what is going on, and what I could possibly go through with this disease, and I ask myself "Why me?". Sometimes I cry about it, and it can be overwhelming. I have only been diagnosed since February, and I am 31 years old. I thought I would be enjoying life. But I realized that there is a greater purpose for me, and possibly I was chosen to carry this burden, to be able to look outside myself and help others with the disease. I never take life for granted now. I live for my kids, and my family, and I'm grateful that I'm alive. Even though I'm suffering, I remain optimistic. Be strong! Be strong for yourself, and your family! They need you. Don't give up and let Lupus win. Have your doctor reevaluate your treatment if you are not finding relief. You work long hours as well, have your family pitch in if they can to help you around the home, or you may have to scale back some hours. The worst flares for me come when I over exert myself.
Can i first say your with people (2nd family) in my eyes...who truly understand what your going through besides the pain and working like you are and alot of member's have'nt been able to keep working through the pain...it really does hit you hard emotionally besides physical.
I know your working because of support for your family but pressuring your body will make you even lower and the pain strengthen plus besides your seizures occuring....you may not feel this but your actually stressed out and Lupus alone thrieves of stress and depression and it will make your symptoms feel double what they are, when you have lupus so strong as you have it your days should be paced slowly which alot of member's have learnt and also found a difference with the pain and that's including myself besides.
I was born with Lupus but only found out 5yrs ago and have A1 Diseases overlapping autoimmune Diseases which makes symptoms alot more complicated...i'm now 43 and have had 2 forms of seizures since i was 18...i used to have 18 seizures and more a day and that was including night time like yourself and when i mentioned stress earlier, seizures attack mainly through stress any specialist will tell you, your life as to be as stress free as possible.
The speech trouble you have, i also have and it's very and i mean very flustrating to we...the pain from your seizures sounds to me like you've gone to the state of internal bruising which it's called...although your on meds like myself i still have them but through keeping having them over the years, if i have one now i feel like i've been hit badly that's the internal bruising and regarding spasms i have them daily, the pains so terrible so i understand all issues where your coming from.
If you don't mind me asking what seizure meds you taking, as i've took a cocktail over the years but i'm highly drugged now...so they've carmed for me but still classed as chronic, i have grandmal & temporal-lobe seizures besides suffering with Todds paralasis.
Sorry it's been a long answer to you and with seizures never mind foggyness off the Lupus...we can only read to a certain extent before our minds can't take no more.
((Keep strong mate but the stress is'nt helping one bit besides the hours your doing to support your family))
I like your positive attitude,, and may I say you photo shows that you are a very beautiful woman, as a female its tough to maintain a good look when you feel bad,, and all your bits are falling apart,, Im 55yr old,, and many bits have just gone,, but you keep going,, do the best with what we have,, and always remember their are so many in this world so much worse off than we will ever be,,
RisaRae said:
I know exactly how you are feeling when it comes to the constant pain everyday. I often get frustrated when people ask me if " I'm feeling better ", when the reality is you never really feel better, you just manage. Sometimes I think of my life and I feel really down about what is going on, and what I could possibly go through with this disease, and I ask myself "Why me?". Sometimes I cry about it, and it can be overwhelming. I have only been diagnosed since February, and I am 31 years old. I thought I would be enjoying life. But I realized that there is a greater purpose for me, and possibly I was chosen to carry this burden, to be able to look outside myself and help others with the disease. I never take life for granted now. I live for my kids, and my family, and I'm grateful that I'm alive. Even though I'm suffering, I remain optimistic. Be strong! Be strong for yourself, and your family! They need you. Don't give up and let Lupus win. Have your doctor reevaluate your treatment if you are not finding relief. You work long hours as well, have your family pitch in if they can to help you around the home, or you may have to scale back some hours. The worst flares for me come when I over exert myself.
Thank you for the compliment. I think mustering up the strength to keep up my appearance keeps me going, and it’s therapeutic . I don’t want to be constantly reminded of Lupus every time I look in the mirror. I AM NOT LUPUS! I AM ME! If you have come this far with Lupus keep on fighting. I’m determined to do whatever I have to be alive for my family. I don’t like my kids to see me down and suffering, so I get up like everything is normal, and do my hair, or my makeup and continue living.
whispers said:
I like your positive attitude, and may I say you photo shows that you are a very beautiful woman, as a female its tough to maintain a good look when you feel bad, and all your bits are falling apart, Im 55yr old, and many bits have just gone, but you keep going, do the best with what we have, and always remember their are so many in this world so much worse off than we will ever be,
RisaRae said:
I know exactly how you are feeling when it comes to the constant pain everyday. I often get frustrated when people ask me if " I’m feeling better ", when the reality is you never really feel better, you just manage. Sometimes I think of my life and I feel really down about what is going on, and what I could possibly go through with this disease, and I ask myself “Why me?”. Sometimes I cry about it, and it can be overwhelming. I have only been diagnosed since February, and I am 31 years old. I thought I would be enjoying life. But I realized that there is a greater purpose for me, and possibly I was chosen to carry this burden, to be able to look outside myself and help others with the disease. I never take life for granted now. I live for my kids, and my family, and I’m grateful that I’m alive. Even though I’m suffering, I remain optimistic. Be strong! Be strong for yourself, and your family! They need you. Don’t give up and let Lupus win. Have your doctor reevaluate your treatment if you are not finding relief. You work long hours as well, have your family pitch in if they can to help you around the home, or you may have to scale back some hours. The worst flares for me come when I over exert myself.
I’m so sorry you have to deal with all this, Bruce. I can certainly relate when it comes to pain, fatigue and brain fog; it has been years since I have had a pain-free day. I also carry on and work very hard in life, but as my symptoms progressively get worse I am realizing I need to slow down. I am running myself ragged and just can’t do it anymore. It’s a very difficult thing for me to admit as I am only 25 and have a 4 year old daughter that I to whom I would love to give the world. I do realize, though, that she needs me more than anything I could give her.
I do not suffer from seizures, but I have worked with several people who do. I know it takes such a toll on your body. I just can’t imagine…
I wish I had advice for you or that I could help in some way. Really, all I can say is I wish you well and I will keep you and your family in my prayers.
Hello Bruce, I am sorry to hear of all that you are going through, stay strong don't give up, this to shall pass, we are more than conquerors through him that strengthens us, when we are weak that is when God is strong, he has carried me a many days. I do agree with some of the other members, you should talk to your doctor and see if he will be able to subscribe you a different type of medicine because your seizuures should be able to be controlled with the proper medicine that works for you. May God bless you and your family, and I will be praying for God to strengthen you as you go through this situation.
Hay Bruce , hold on to your FAITH !!!!You have to fight even when you don't want to!!! Get some rest fter you get off from work ( remember rest is the KEY factor to Living with LUPUS ) , and maybe your over doing it to your body not resting !!! Take care of yourself ..... Beverly L.
Im so sorry Bruce, I know the frustation, the pain, the endless pain, I know, I have Lupus, Fibro and Lymes, seems like sometimes your life consists of what you have to get done because you dont have the energy for anything else. I have 5 children ranging ages youngest is 5 all of which takes high energy, I help my husband with two businesses, and I have a part time job on top of the full time job of kids and home and family, There are days that I feel like muscles of my forearms are being ripped off the bone, my kidneys feel like they are coming out of my back so dont feel bad about talking about how you are feeling What are you doing medically? I have tried both medical and natural, Ive had luck with the combination it does not take away all the symptoms but it does calm them. Thoughts and prayers are with you. kate