View Full Version : Pain That Never Goes Away
03-04-2011, 10:37 AM
I was diagnosed with Lupus, Fibromyalgia, Glaucoma, Orthopaedic issues from childhood that went undiagnosed until adulthood that has caused leg, back and hip problems and a Chiari Malformation. I am on Prednisone, Oxycontin, Percocet, Soma and Valium and I still can't take care of my family and my house I am in so much pain half the time. I have tired so a many things and nothing is working. I have 3 special needs kids and my boyfriend might have MS. If that isn't enough, my sister has Leukemia and my mother has breast cancer so needless to say things I have to do everything myself and I am getting so scared. I have tried praying, imagery, frequent breaks, physical therapy, counseling, crafts, raw food diets, supplements, all kinds of tests and medications, wrote to specialists and talk shows. I am at wits end I just don't know what to do anymore. Any suggestions?
03-04-2011, 11:48 AM
Welcome back! I see you joined here a few years ago but are a new poster now. So welcome as well!
I know you have a lot going on and please know that what I am about to say is not meant to sound blase. Have you tried just breathing? There are several breathing techniques specifically used to help reduce stress and calm the body. I can see that you clearly have a lot of personal and outside stress going on and you obviously know you need some sort of outlet to manage it. Maybe you just need a combination of things like breathing techniques + praying + counseling + exercise to helo you with that stress. Obviously it won't make all your problems go away, but it might just make them more manageable.
03-04-2011, 12:14 PM
I am so sorry to hear that you are dealing with so many stressful situations at the same time. It must be extremely frustrating to feel that you are at wits end with no relief or help in sight.
One of the things that you may find helpful is being able to talk with others who completely understand you and who do not judge you. While we cannot offer you any physical assistance, we can give you support, comfort, understanding, advice, and a safe place to unburden yourself.
Again.......Welcome and I hope that you are able to find some physical and emotional relief.
Peace and Blessings
Hello Reckerdt. I am so glad that you decided to post! I have to agree with Susie on this. I am a firm believer that bottling things up causes more stress (which for us leads to pain and illness) than anything else. We can't fix it for you but we can and will help you through this by being a shoulder to cry, an outlet for anger or simply be a place where people understand.
The pain is often times horrible but for me finding WHL helped that because I had finally found a place where people understood that I was really sick and not lazy or crazy or whatever. Give it a shot. What can it hurt.
PS We are really glad to have you join our family
03-05-2011, 12:45 PM
I am a newby but contact your local council. They can offer you quite a bit of assistance. I get a house cleaner once a fortnight, they organised making my shower safer and more user friendly, got me a physio (via Dr). I can't remember what else, I just remember they really helped me at minimal cost. I think my cleaner costs me $3or $4 for 1 1/2 hrs. Hopes this helps.
God Bless, Lena
03-05-2011, 01:17 PM
Hi reckerdt, I'm glad you posted. You're going through too much to go through it alone. This group is wonderful and a valuable venue to let it all out with people that care and understand.
03-05-2011, 02:50 PM
I am a Newbie also, so i really dont know much about Lupus myself and have no advice except that my heart and prayers go out to you and your family. Your little ones are beautiful . There seems to be a lot of good people that care on this board. May God bless and be with you.
05-12-2011, 03:21 PM
Hi reckerdt, I sure can relate with you. I too have Lupus and severe Fibromyalgia and the only time I ever get relief is whenever I am asleep. Other then that, 24/7 severe pain. I just want to mainly say, thank you, for sharing and positive thoughts going your way!
05-13-2011, 07:10 AM
I really do sympathize with you mate the pain is 24/7 and if it eases in one place it shoots to another and my medication does knock me out but you can guarentee come 5 or 6 am i'm being woken with muscle spasms lately.
I hope your abit less pain free today HUGS Terri xxx
05-13-2011, 07:17 AM
I was diagnosed with Lupus, Fibromyalgia, Glaucoma, Orthopaedic issues from childhood that went undiagnosed until adulthood that has caused leg, back and hip problems and a Chiari Malformation. I am on Prednisone, Oxycontin, Percocet, Soma and Valium and I still can't take care of my family and my house I am in so much pain half the time. I have tired so a many things and nothing is working. I have 3 special needs kids and my boyfriend might have MS. If that isn't enough, my sister has Leukemia and my mother has breast cancer so needless to say things I have to do everything myself and I am getting so scared. I have tried praying, imagery, frequent breaks, physical therapy, counseling, crafts, raw food diets, supplements, all kinds of tests and medications, wrote to specialists and talk shows. I am at wits end I just don't know what to do anymore. Any suggestions?Hello reckerdt,
Nice to have you back with us but so sorry about your circumstances, my god you have got your hands full of worry and concern.
I was like you had things for years but never diagnosed till adultness and it does get so annoying, it's neglect really bad when it could have just been a few more bloods to be took.
I know your doing alot but all this stress with only make your symptoms alot worse because by your typing your sounding stressed out to the full and your condition's thrieve on it and you'll feel much worse.
I know it's hard for me to say but you do need out side help and if that's possible where you live i would definitely look into it.
All my thought's are with you and wishing you the very best and your family. Terri xxxxx
05-15-2011, 04:01 PM
Oh, I feel for you :( I am lucky, the rest of my family is relatively healthy... they are just not sympathetic so wont help out on principle. I too have a special needs child :) Just one, my little girl. She has SOD/ONH but is a very bright little girl. She is exceptional at maths but is taking a little longer to read. She is six and we are already doing multiplications with her... but she still cant reliably read. I know what its like to struggle with a condition and the extra needs of a special needs child while having to work and look after the house! My sister has an unknown illness in the process of being diagnosed... and my family isnt helping her out, she is all alone. I live over 1000kms away and wish I was there for her :( She is very small and has been fit and healthy all her life... a fitness freak... she was a personal fitness trainer. Over the last five years she has been suffering from ever increasing hand shaking and dizziness... til this year it got so bad she was passing out regularly... one day she broke a front tooth. She finally went to get something done about it and they discovered cysts on her brain and her blood sugar levels indicate she has some sort of pre diabetes. They dont know why. I wish I could be there for her, I am going for a loan today so I can move back to brisbane and go to specialist appointments with her. No one else is taking it seriously!!
Have you tried writing a blog? I know there are a lot of people out there with incredible lives who have found writing a blog to be very therapeutic. I know your story would be interesting so I am sure you would have a bunch of followers who in turn will offer you support. It will also get your plight out there and known and you may be able to snag some help from organisations who might feel compelled to offer a helping hand through a free cleaning service or products that will make your life a little easier.
Let us know how you go, I know my problems are small compared to yours, but I have a mini version of your problem so I would dearly love to see you get some relief!
05-15-2011, 11:30 PM
contact centrelink. they can offer interest free, or reduced interest loans.
relocating for family health reasons, qualifies for these loans.
05-16-2011, 03:11 PM
I will look into it :) Im not on centrelink though but hopefully they can still help me out.
05-27-2011, 05:33 PM
Just stopping by to see how you are?...and i hope tomorrow is a better day for you.
((Hugs Terri)) xxx
05-29-2011, 05:41 PM
I have back/leg/hip pain regularly but it has been nasty in my back & neck to the point I couldn't take it. It limited my physical capabilities until I got the right combination of medication. I tried narcotics and couldn't tolerate anything (Lortab, Percocet). Muscle relaxants, Ultram, NSAID's, Darvocet didn't help. Only thing that worked for me was the right dosage of neurontin and that keeps my thoracic pain under control, and toradol kept my neck pain under control over the past few months, now it's calming to where I don't need toradol much anymore. Physical therapy helped too. You might consider trying that if the pain is that bad.
05-30-2011, 07:53 AM
Hi I am new to this forum. I have pain and fatigue daily and take many meds to cope. My greatest coping mechanism is trying to remember that today is all I have. I live moment by moment trying to appreciate the little things. I can't imaging raising 3 special needs children. I have one and he breaks my heart daily. Hold on to faith and try to find something beautiful in every day.
05-30-2011, 12:10 PM
Welcome again and it's been a pleasure just reading what little you had put, great comment about living day by day.
What touched my heart was your child breaking your heart daily, so beautifully expressed on how your feeling in general.
Live by the day. We were just discussing that in the movie thread. One of my all time favorite lines and I do try to live by it although it is a bit harder since I became ill.
Carpe diem(Seize the Day)! Wonderful way to look at life loved