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  • So scared at how I feel...



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    Old 10-16-2003, 10:34 AM   #1
    Stephanie6603
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    Unhappy So scared at how I feel...

    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. Iím in such desperate need of help I donít know what to do. Iím 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 couldnít imagine why my bladder felt so bad. Anyway, as time passed more and more ďsymptomsĒ 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 donít know how to describe it but as my whole being feels so sick and I feel like my legs wonít 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. Iím 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 donít 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 canít 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, didnít 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 doesnít 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. Iíve 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 Iím 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 canít 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.

     
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    Old 10-16-2003, 10:52 AM   #2
    spaniellove
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    It really does sound like fibermylasia. I thought that toward the beginning of your post when you were listing your symptoms. I feel so much for you! My best friend growing up was diagnosed with this a couple of years ago after she got married. I know that she has had a terrible time, and like you, I've known her most her life and she was very healthy. Now going to work is a challenge. Stress, depression both play a part in this. K. has gone to countless doctors and many are clueless because this is so new.

    If this is what it is, have faith. Take the pills and hopefully they will alieviate some of your symptoms. If your current medication is giving you side effects, tell your doctor and find something that does work for you. Most side effects do calm down after the first two weeks. The pills should take 2-6 weeks to kick in, so you have to give them time. I'm sending you a big hug (((stephanie))) K. has lived with this for three years now. She and her husband have just started to try for children. This may slow you down at times, but it won't stop you! I'm sending prayers and good thoughts your way!

     
    Old 10-16-2003, 11:19 AM   #3
    im_a_jersey_girl
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    When I get really, really anxious, I get an chy feeling all over, kinda crampy like. Mysteriously, when I stop thinking about it and concentrate on something else, it goes away..so I know it' all in my head. It's anxiety. It feels so crappy, that I'm sure I'm coming down mith the flu or something. Before you know it, I'm feeling just fine. Anxiety and stress causes everyone very different symptoms, and if your doctors tell you you're OK...believe them!!! Keep giving the Paxil a try..it should help you in a little time..mine took about 3 weeks to kick in.

    Good luck and feel better
    Cathy

     
    Old 10-16-2003, 11:45 AM   #4
    luvmyboys
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    Boy, where do I start. I have many many of the same problems you are experiencing. I went to all kind of doctors for many years. When I started high school, my ibs kicked in. I learned how to control it and it got better. However, it flared up again when I got in college. Then it kind of plateaued for a while and I learned to live with it, but it was starting to consume me. Then I met my husband and things got better for a while. After we got married(and by the way I had a major ibs attack on my wedding day) it started to flare up more and more to the point where I was afraid to eat and drink and was hospitalized with dehydration. I was then put on elavil and a birth control pill and things again got better. Went off of these to get pregnant and it took 3 years. The thing was when I got pregnant, my ibs got better. After having my first child, the ibs was awful. Stomachaches and anxiety and mood swings coupled with post partum depression were the rule of my days. Again I tried elavil. Couldn't take it. I had tons of side effects and then I started noticing side effects to simple over the counter medicines like tylenol and sudafed and advil. I couldn't take normal dosages. I had to take smaller ones. (First symptom I had of fibromyalgia) I saw and gastro doctor and of course everything was normal. Then I had my second child. Same thing, good pregnancy, bad after pregnancy. I am now 34 and my kids are 5 and 8. I have been diagnosed by going to many doctors and even up to Mayo Clinic with, you ready?, Irritable bowel syndrome, interstitial cystitis, depression, anxiety and panic disorder, chronic reflux bile gastritis, arthritis in my neck (from car accidents and causes headaches), adenomyosis and fibromyalgia. I think most of it from what I have read about fibro is symptoms of that and not necessarily separate disorders.
    There are days I don't even want to get up my legs are so achy or my head hurts so bad or my colon is so wild I cant stand it. But I keep on going because the more I move around the better I feel. The only medicines I take are prevacid, carafate and xanax. I really think the anxiety and panic stems from the many years that I searched for what was wrong and thought I had something really terrible and would never see my kids grow up, but I've been suffering with most of this for at least 5 years and I'm still here. Scared a lot, but here. I do the best I can each day and try to keep busy. I would like to work, but am lucky because my husband has a very good job and I don't have to. I think in my case it would add to my stress level having to go away when not feeling well. Plus I am here for the kids and all their school stuff.
    Please know that you are not alone and I only wrote all this so you would see that major life changes such as college, marriage and kids can stress people even if they don't realize it at the time. I cried when I read your post. I know what it's like to be scared about your health. You are in my prayers. If there is anything you want to know about any specific symptoms I experience, please post again. I will keep checking this board. Keep in touch.

     
    Old 10-17-2003, 08:46 AM   #5
    Stephanie6603
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    Spaniellove, thanks for your reply....thanks you for sharing your friends story with me. It really meant alot. I don't want to have Fibromyalgia, but Im scared it could be some kind of nerve damage too. Taking the pills is very hard for me since i usually don't even like to take tylenol, but I will do anything at this point to try and feel better. Im so happy your friend is able to at least try and have children with her husband. I hop that someday I can do the same....Im so scared that I will be worse and will be on pills forever. I know I shouldn't think that way, but its hard not too. Thank you for you encouragement and time!

    Stephanie

     
    Old 10-17-2003, 08:52 AM   #6
    Stephanie6603
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    Cathy, your words sound so encouraging, but no matter what I do, (workout, go out with friends, do a hobby, or even try to meditate) my pain and ucky feeling is ALWAYS there. Its so great that you have learned this about yourself as it is powerful tool to help you when you are in an anxious/or derpressed time. Im going to give the paxil a shot, no noticable horrible side effects after day 10, but not feeling physically any better. It stinks cause my mind seems so clear, (even before the paxil) but when I dwell on how I feel, thats when I lose it and feel sad. I will give the paxil a shot to show the doctor that maybe my gut is right and its more than just anxiety....a part of me hopes not though cause I just want to wake up and be my old self again.
    Thanks for your time,
    Stephanie

     
    Old 10-17-2003, 09:43 AM   #7
    Stephanie6603
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    luvmyboys...thanks you for your reply and for taking the time to share your life with me! Boy, you really know where I'm coming from. Im so happy that you have your children and I can imagine your fear of worrying about them growing up but my god look how far you have made it. Iam so happy for your family in that sense, I just wish you would feel better. Imagine how I feel. My husband is an only child and I want to give him children so bad and fear that my pain or meds will keep me from having a baby. I feel inside that I have let him down, myself down and our families cause they can't wait for grandchildren....this is the weight I bear and guilt I feel everyday. I know I shouldn't worry about this but it's easier said then done. The weird thing about my IBS is that in college I can admit I was nervous being away from home. I can look back on it now and admit that though consciously then I never would have believed it. After all those invasive GI tests and the IBS diagnosis I started Liberax for a couple months and stopped on my own. My flares were very limited, usually I would go on a cruise (cause i hate flying) and eat too much and then through my system into a world wind. but otherwise, thankfully, the IBS never held me back as I can see yours may have. I don't want to ever say that I want to have Fibromyalgia, but it would be easier to accept than having possible nerve damage or neuropathy in which I believe I may have. I mentioned this to my doc, and he kind of chuckled in a nice way and said no way. I just think these feelings I have are something so terrible. My newest symptoms started with a chilling sensation all over my body, and now I feel, though not numb, weir sendations in my fingers especially pinky and ring fingers. Im constantly checking them with a pin to make sure I feel, and am obviously driving myself crazy. They feel almost dulled and then I have shooting, sharp short pains down into my hands, in my finger nails. Sometimes feel deep and sometimes feel right below the skin. Really everywhere, but more noticebly lately happening there. and the the cold and hot sensations started. Sometimes my hands feel cold and again the pinky and ring finger seem colder than the rest, its so weird, but my hands do not change color like suggested with some syndrome called Reynauds or something like that. Plus the hot/cold sensations are felt in my feet and lower legs too. I hate when new symptoms arrive, I wish one would go away everyday. Through all this, barely any sleep, supposed anxiety, supposed depression, and pain, I thankfully never get headaches except for the occaisonal sharp pain in my head or pain behind my eyes (probably from crying so much). I thought headaches were a main symptom of FM. I just read about that, and never told my doctor that. Anyway, you are so lucky that your husband has a good job that allows you to stay at home and tend to your home and your children. But to be honest, that may be harder than going out to work....lol.... I was working 6-7 days a week before I was married for two years to help pay for my wedding, and pay off bills. I have a full time job during the week and waitressed /hostesses at a resaurant on the weekends. I just gave up my part time job two weeks ago because it just became too much for the new me. I really liked that job though. My husband is incredible, and he is a policeofficer which doesnt make alot of money, but at least we have insurance and his job is safe. Thats funny cause I cried when I read your post too. Thanks you again for your time and for allowing me to ramble. This so isn't like me, but feels comforting knowing that there are more people like me. I told my husband the other day, we all know how much Sadam Hussein is hated and Osama Bin Ladin, and I actually told him that I don't wish how I feel on my worst enemy, including them!

    Stay tough!
    Stephanie

     
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