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FM is No joke

Jun 24, 2015 8:43 PM

Since I have been little I have always had pain threw out my body only since January of this year has it gotten worse starting with crazy migraines the pain all threw out my joints some days its my elbows and wrists, ankles and knees, hips and pelvic joinys, fingers and neck basically it likes to move all around my body whenever it wants, rainy days its excruciating, hot summer days the fatigue kicks in and the pain is unbearable, basically the only time I don't feel pain is when I am alseep and getting to sleep is a tough one in it self, "My history" my mother had lupus and when I was in womb at her age of 30 she just found out that she had it and the doctors where pumping her full of trial and error medication basically a lot of different nasty medications, the doctors then said you need to abort your child, Me! She of course said no way to that because both of us would have died, so I have inherited basically everything she had and a bunch of other illnesses she didn't, GERD, bilateral plantar fasciitus, bilateral pes-cavus, asthma, depression and all that comes with that, fibromyalgia & possibly Lupus, she was a trooper and what she calls a lab rat being poked and podded by hundreds of doctors their needles and treatments she finnaly had enough and decided to stop treatment in 2003 she passed a month later,,,:(
At 35 years of age I have more things wrong with me than she did first finding out she had Lupus the pain from my recent FM diagnosis has gotten worse each month, i tried 4 medications so far, Sevella, Gabapentin, Lyrica & Tramadol for pain all of which have not worked and or had to go to the ER because of side effects, i use medicinal marijuana for pain and most of the time that doesn't even help, my doctor wants to try Cymbalta but is afraid I may get in a manic eppisode for i no longer take phsyc meds and have overcome having to rely on them for the depression and anxiety. My mothers side of the family has ostricised me and they really dont even know who I am and only hear about the bad things i have struggled with in life from my selfish and disrespecful brother and even now my father and brother think they have an idea of the pain and fatiuge i constatly go threw but actually have no clue, so i really have no support in my life and not sure what to do with all that is going on, for I have exasperated just about every option, guide me, help point me in the rite direction.

Thanks for reading, JiR

Jun 24, 2015 9:01 PM

CopperChef35 welcome to our family community. We are hear for you anytime you need to talk. There usually someone here, you can rant and rave all you want no one will judge you because each one of us has been there before and probably will be back at some point. We talk about everything in our lives, there is usually someone who has had the same thing or knows about what you are going thru and can offer suggestions to what they did in those situations. We talk about Dr.s and medications, procedures. It seems like you have had a hard start in life. I'm sorry about your Mom it's hard to see someone you love suffer in pain ,and there is nothing that you can do. But hold on to your faith, and God will see you through. Don't give up stay strong. Will be praying for you.

Jun 24, 2015 9:33 PM

Thank you for those kind words, ill keep strong and continue to seek the medical advice i need.

Jun 24, 2015 9:37 PM

Welcome to our community CopperChef35! I'm sorry about your mom's suffering, and yours also. It's very painful, emotionally when family judges us. As Weezie said, we are all here for each other. We all share in common our chronic pain. I hope you find the people in this community as supportive and compassionate as I have. They're full of ideas and suggestions that I hadn't thought of.

I also have the fibromyalgia and last year was on cymbalta. But they took me off due to sudden death thoughts (not suicidal but wanting death to come), and it began to increase my pain. Not everyone reached that way, but I have too many meds allergies & intolerances to count. Last year I was diagnosed with MTHFR gene defect, which prevents me absorbing B vitamins and metabolizing benzodiazepine drugs. So I have to tolerate a lot before I take prescription pain meds.

Just this year alone I've been diagnosed with dementia, hypothyroidism, and sjogrens. I'm also awaiting a diagnosis for tremors that are worsening, imbalance (now use cane/walker/e-care), tingling/stringing/burning senses that comes & go, dizziness, etc. I was very surprised to see that hypothyroidism, sjogrens, & fibro share many symptoms, so my last fatigue spell was extreme. The Plaquenil is helping some but I tire easily. Seeing your description of symptoms it bet you have one or two other issues compounding your fatigue and pain. I opted you will find the support and understanding as we all have. Here you will not be judged. Though we are all different, we try very hard to respect each other & individual beliefs. I'm a very faithful trusting Christian, who trusts God for my strength to get through day by day. I pray for everyone. But as faithful as I try to be, I am only human, so I'm not perfect. I believe in the golden rule, of treating others as I want to be treated, and I try to remember to act as Jesus would want me to (as He would). Again, welcome & God bless you! 🌼

Jun 26, 2015 11:42 AM

Hello CopperChef35 😊, welcome to our little community. You mention seeing doctors; do u see a pain mngt specialist, or a neurologist, or even a rheumatologist? There are also NeuroPsych doctors as well - they help ppl who are dealing with both chronic pain and emotional issues because of it.

I also have had pain since I could form memories. I was born with a rare congenital medical condition known as cloacal exstrophy, or bladder exstrophy. I have extensive severe nerve damage plus copious amounts of scar tissue. Later on it led to IBS, GERD, Interstitial Cystitis, Endometrioses, Vulvadynia, etc.

Also, have you heard of The Spoon Theory by Christine Miserandino? She has Lupus, and came up with a brilliant way to explain it to ppl. The great thing about it is that you can use it to describe many illnesses and diseases.


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