Hello everyone. Posting on these boards is usually not me, but when I read and see the compassion that people have, I thought it was worth a shot. I’m in such desperate need of help I don’t know what to do. I’m a 28-year-old female, healthy, just lost 90 lbs in 13 months. Over the last year, I went to the gym 3-4 times a week, weight trained and did aerobics, planned a wedding and worked full time plus waitressed on Saturdays. I was married in June and came home from my honeymoon on June 22nd. The last week of my honeymoon I began having stomach pains and loose stools. At first I thought a bug since I was on a Caribbean Island, but it was relentless so I attributed it to my irritable bowel that I was diagnosed with freshman year of college (1993). Coincidently, I received my third shot of Hep B vaccination on June 24th. Over the next few weeks, I did feel blue that the wedding was over and back to reality. I started to develop urinary frequency and a painful bladder and burning after urination. My Gynecologist said everything on that end was fine and referred me to a urologist. No signs of an infection! After seeing the urologist, she suspects pelvic floor tensed muscles or something called Interstitial Cystitis (IC). After reading information about IC I was obviously upset to find out that the outcome is not positive I couldn’t imagine why my bladder felt so bad. Anyway, as time passed more and more “symptoms” were coming out. Three months later I can tell you that my body hurts in so many places. My shoulders ache, mid to upper back have severe pains, deep pain in chest, stomach pains, legs feel weak and shaky like i can't support myself, feel like my walk is off, even pain in my rectum. Plus sharp, shooting pains ALL over. Sometimes I get this feeling that comes over me and I don’t know how to describe it but as my whole being feels so sick and I feel like my legs won’t walk, (but they always do). I have small muscle twitches or feelings of like bubbles all over like my calves, trunk, chest, face and even female parts. I feel so tired, but my mind races with so many thoughts and cannot sleep at night. Am up tossing and turning or crying to my husband. The worst is recently I began to have painful shooting sensations into my hands and feet and tingling. Sometimes even holding the steering wheel of my car hurts my hands. Others times the pains just shoot for no reason. I feel sensations of heat and cold in my hands in feet. Mostly my ring and pinky fingers. My lips are tingly and feel slightly burned. I’m terrified that I will get worse and not better. I have gone to my regular doctor twice in which he did a whole bunch of blood work for CBC, ANA, RF and sed rate plus a urinalysis. He said all the results were normal. He sent me to a rheumatologist to set my mind at ease, so I went and the rheumatologist said Fibromyalgia and prescribed Elavil 10mg at bedtime. I just don’t understand how a perfectly healthy person could just develop fibromyalgia. Now I can barely do 20 minutes of aerobics maybe 3 times a week and forget about weight training, I can’t even raise 10lbs above my shoulders. I Took the Elavil as the rheumatologist suggested for 12 nights and just kept feeling worse, the pain is so bad at night so I made an appointment with a Neurologist. He performed the regular in office test of coordination and muscle and said that everything neurologically looked fine, didn’t see any muscle weakness despite how I feel. He said the only test he would perform on me would be a spinal tap and he doesn’t even think that would yield any results. God I really am scared to have that done. He said to stop Elavil and gave me Paxil CR 12.5 mg to try. Thinks is all anxiety. I’ve been on Paxil CR now for 9 days and feel worse everyday. I pray everyday it is anxiety and the change of marriage and a new life but I’m terrified every minute of every day how awful I feel. I know that I do have anxiety and nervousness as a result of my pain. I feel in my gut that it is from the Hep B shot and I can’t stand the guilt I feel for doing this to myself, especially since I was at no risk to get Hep B. I was stupid to have asked for this vaccination! None of the 3 doctors believe its from the shot. I worry about Neuropathy, CIDP, ALS and MS. If anyone has any input I truly appreciate it. Its so not fair to my husband to start our marriage off like this, we planned on trying to have children next summer and fear that I will never be able to. If you made it this far, thank you for reading.

First of all, it is not your fault! Don't be blaming yourself. That will just make you feel worse, and there is nothing you could have done to prevent this.

I admit, I'm new to fibro, I just saw my PCP yesterday, and have been referred to a rheumatologist for further diagnosis. Thanks to this message board, I am learning fast. That is what is helping me accept the possibility that I have fibro (that and alot of faith). The healthiest thing at this point is to learn all you can about the condition, how to live with it, and what you can do to feel as good as possible. There are many suggestions on here, from people who have learned by experience, and hopefully we can learn from them.

Hang in there! There is hope!

i am very sorry to hear this has happened and i wanted to reply so maybe you would feel better. my brother has had fibro since 7th grade and just was diagnosed two years ago. so he suffored for 7 years. since he has not gotten any better in these two years with all the trial and error of treatments. we did lots of research and started seeing many doctors because it seemed there were so many other things that could be wrong with him and we just needed the right doctor to take interest, like the thyroid. i wish i could tell you he is all better, but i must insist that you do not give up and believe that fibro is your diagnosis. there are doctors out there that believe fibro is simply a cover for something else and needs to be treated. it is a lot of work to keep researching a visiting doctor after doctor but please let your husband know you need all the postive reinforcement he can give. you are young and that should be the red flag that you do not have this. i will pray for you, because i know how you feel. i will post when we find out what my brother really has and i know some people may not like we have come to this conclusion about fibro, but oh well. you will get better!!!! JEN

[This message has been edited by Jen M (edited 10-16-2003).]

i am very sorry to hear this has happened and i wanted to reply so maybe you would feel better. my brother has had fibro since 7th grade and just was diagnosed two years ago. so he suffored for 7 years. since he has not gotten any better in these two years with all the trial and error of treatments. we did lots of research and started seeing many doctors because it seemed there were so many other things that could be wrong with him, like thyroid and we just needed the right doctor to take interest. i wish i could tell you he is all better, but i must insist that you do not give up and believe that fibro is your diagnosis. there are doctors out there that believe fibro is simply a cover for something else and needs to be treated. it is a lot of work to keep researching a visiting doctor after doctor but please let your husband know you need all the postive reinforcement he can give. you are young and that should be the red flag that you do not have this. i will pray for you, because i know how you feel. i will post when we find out what my brother really has and i know some people may not like we have come to this conclusion about fibro, but oh well. you will get better!!!! JEN

bjo....thanks for your reply. Everyone tells me not to blame myself, but Im an intelligent person and should have researched the vaccine and then i would have known I would never be a risk for this type of hepatitis. I live with this guilt everyday. I agree we have to keep learning and finding out what will work for us. You hang in there too!

Stephanie

Jen M....thanks for taking the time to reply....Im sorry to hear about your brother, thank god he had you and your family's support. I agree, I just don't understand how I could wake up one day and start to feel so sick. I don't have the energy, emotional stability or money to doctor hop, but if thats what I have to do to help myself then I guess I have no choice. My husband is giving unbelievable support and reinforcement. I just hate burdening him with this so early in our marriage! The guilt is tearing me apart. Thanks Jen and tell your brother to stay strong!

Stephanie

Stephanie, My DR said the IC (bladder problem) and a lot of your other symptoms sound like Fibromyalgia, but I'm NOT trying to diagnose you. That ribble feeling of your muscles is a FMS symtom. Terrible exhaustion and then insomnia is part of Fibromyalgia.

I hurt for you, because after 3 yrs, I have a wonderful PHYSICAN that is an accupuncurist too. She found so many "trigger spots" all over my body that she diagnosed the FMS. We are trying different things for the pain.

I'll try to keep you posted. I hurt so terribly for you. http://www.healthboards.com/ubb/bigcry.gif

Much Love,
Jamy

Jamy....thanks for replying....I appreciate the heads up. You are so lucky to have found a good doctor. I have yet to find one, but when you doctore hop that is looked down upon. Anway, stay strong and keep your head up.

Stephanie

Dear Stephanie,

I'm 45 now but was diagnosed 10 years ago. I too used to be very active, running 3 miles a day, riding a bike 10 miles a day, up at 5:00 a.m. every morning, work a very stressful job, come home, clean house, do laundry, cook great meals, raise two boys, and still have enough energy on Friday nights to go out dancing with my husband. Now, I'm just grateful for the days that I can walk when I get out of bed. I don't want to discourage you, everyone's progression of FMS is different. But there are a few things that will help. First, you do need to find a doctor that believes in and is familiar with fibro. Second, take the meds prescribed for you, if they don't work, go back and tell your doctor you want something different. It takes a lot of experimenting sometimes to find just the right "mix" of meds. Try to keep a high level of water and fiber intake in your diet. For me, the better I can keep all the crud flushed through my system, the better I feel. Don't push yourself until you're exhausted. Learn to listen to your body, on days that you just don't feel like doing anything, don't. On the good days, do what you can, but don't push because you'll end up with a flare up. Get as much rest as you can, avoid stress when possible. Try so gentle exercise such as Yoga or Pilates that cause very little impact to your joints.

And stay tuned to this board, there are a lot of us that care and will share our experiences with you to help as much as we can. Good Luck.

hi, praying you are better! i have been thinking of you. my brother is currently seeing three doctors. remember this is your health and do not worry about hurting a doctors feelings. have you looked into guillain barre syndrome? i heard somewhere that it has been known to be a side affect of hep b shot. just wanted to pass this on and hang in there!!! jen