27 yr old female; intro etc.

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cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/3/2009 10:58 PM (GMT -7)   
hi, i'm new to the forum, and i tried doing this on my blackberry first, then hooked up my laptop when i realized that i can't.  lol.  i'm a text typer, so if i abbreviate too much, just let me know, i'll try not too.  i already finger typed this once, and couldn't copy it, so it may not sound as enthused  :)
 
ok, so i'm 27.  i first showed signs of fibromyalgia in college.  at that time, i was only affected once a year.  Now, it rules my life.  The first day that I really felt symptoms I asked a friend to write notes because i could not even hold a pencil.  I described it as having a rubberband around my arms and legs that cut off the circulation, and that if i could run i would probably feel better b/c it woud warm up the muscles, but i hurt so bad, i could barely walk.  at the time, i was not even 21 yet, and i described it as feeling 80.  i was a single mom, 4.0 gpa, job, and managed very well.  i took a break my sr. year, and have yet to complete my last semester, but there were more important life decisions at the time.  my child's father and are married now, and i got a great job during my break, worked there for 4.5 years.  everything was going great for me until the end of my employment..aside from battling migraines.  then, in 2008, january i became pregnant.  i miscarried in march, with an unknown clinical conception date due to amennorrhea.  i had a dr that preferred natural miscarriage, and didn't adequately check for fetal tissue afterward. she would check my hcg levels, but after 5 months of multiple instances of pelvic inflammatory disease, and numerous rx of prescriptions, she should have done more.  finally in late june i found out i developed mrsa in the uterus (which is mecically unheard of ..extremely rare).  so i switched dr's and 3 surgeries later, no fetal tisse.  we were told if we wanted more, which i did desperately, we needed to try that month.  i couldn't, not after all that, and my job was suffering.  so, the pain continued to get worse, and problems persisted, and finally i had to have a hysterectomy in november.
 
finally, i thought my problems were coming to an end, not even close, i developed a surgical hematoma from the hysterectomy, severe, had to have blood transfusions, it was a miracle that i survived, i think i had a 1 in 10 chance.  the problem was, the hematoma was the size of a canteloupe and it was bouncing around all of my incisions and stuff.  and of course, like everything else in that area, it would not drain.  so, several months later, the hematoma had shrunken, i could still have it to be honest, but i doubt it.  my body began to absorb it the day they were going to put drain tubes in, which was 6 weeks after surgery.
 
then i thought everything was going to be better, i went back to work, and i still was missing from severe abdominal and body pain.  well, i found out the trauma had activated the fibro and i have all symptoms but 2.  so, i've seen a "fibro specialists" and i've had dr's promise me my life back, and i've had them tell me that i should be glad i don't have something that causes "real pain".
 
i'm in pain management, and it helps, but i'm on 100 mg of oxycontin.  i can't take tylenol b/c of the migraines, and i can't take ibuprofen because of the stomach surgery  at least i can't take them daily.  i also use various other medications, but at one point i was taking so many pills a day it was my food!!!  now, not that many.  luckily, in the last few years, my high bp, high cholesterol, and diabetes have resolved.  lately i have more problems than good.  i recently spent 8 days in the hospital from what appeared to be appendicitis.  it wasn't luckily bc i will not have another surgery if i can help it..the very word makes me panic.  i instead had mesentary addenitis and vomiting from an unknown source.  i ended up continuously vomiting for 6 weeks.  i still get sick.  weird..i know.  so as i'm sure you can imagine i have multiple vitamin deficiencies, but the most continous one is vitamin d.  i did find out that i most likely have a tumor on my pituitary gland that is too small to see on scans, i just have so many odd symptoms that they are relatively certain it is there, an i just have to get checked.  and as a lot of you know, fibro patients tend to be more aware of there bodies so they feel more that is going on. 
 
right now, this week, the pain from cervical stenosis (i have lumbar also) is severe.  and i've done everything i can think of.  i had my husband massage my "hump" yesterday.  it grosses him out, but it's not going away, so i make hiim help me...when i'm miserable. however, he doesn't fully believe in fibro so when he is "helping" me he feels the need to try to desensitize my tender points, which makes it unbearable.  but i've had several migraines this week and i'm having bad muscle pain around the bone.  especially in the shoulder and neck area. 
 
i don't know if i covered it all, but fibro rules my life right now.  i lost my job, i cannot work, and i barely manage my home.  i find that i'm very depressed and i'm becoming more and more reclusive.  little jobs seem like huge jobs.  our son is 8 years old.  i try to enjoy him more, now that life has slowed down for me, but i spend most of my time on the couch.
 
i'm supposed to have a sleep study done this month (i sleep little 2 weeks, then can't get out of bed for 2 weeks), and i'm supposed to begin aquatic therapy.  i'll let you know how it goes. 
 
i'm hoping to learn from other fibro patients.  i've found it very draining emotionally learning to adjust to being disabled without yet being on actual disability.  u guys no what i mean.  disabled in the sense that i don't volunteer for anything, and i'm tired and sick all the time.  i'm always on the couch and i have absolutely no energy.
 
any advice is very appreciated
 
 

Shiffs
Regular Member


Date Joined Jul 2007
Total Posts : 43
   Posted 11/4/2009 1:05 AM (GMT -7)   
Hi Cat,
First let me say Welcome to the forums.. you will find a TON of support here for alot of wonderful people. I have just from reading posts.. I don't post much. (yet)

I'm truly sorry for everything that you have gone through and the stuff you are at the moment. I also had to have a hysterectomy and yeah.. that sucked.. I was 28 at the time, so I know how you feel. When I read that some doctors have told you that you should be glad not to have something that causes 'real pain', I'm just wondering if you kicked them? I think I would have! And then said.. is that real pain? I really hope you no longer have ANY of those doctors.. if you do, kick them for me and then find a new doctor.

I have a feeling that you are going through what I did about 2 years ago..has gotten better in the last 3 months. The depression and being reclusive. Many people that I have talked with that have fibro have gone thru the same thing. The best thing I did was to get checked for a different kind of depression. I have had depression since I had my hysterectomy and have meds for it, but it seemed the meds were not working and I was just getting worse. Sure enough my doctor said that my depression now has signs of other types of mental illness. He said due to all the trauma and pain this happens alot. We added another med in a small dose and wow.. huge difference in every aspect of my life. Might be a path to check out.

The hubby.. mine was the EXACT same!! Didn't really believe in fibro and always tried to help with the sore spots. He stopped the day he saw me crying from him tiring to help. It was then that he asked more about fibro. I went and got a few books on it and had him come to my appointments. He also comes to my counciling appointments, I started going to counciling 6 months ago when I was crying all the time because I could no longer even make supper for my family or clean the house they way I use too, and sat in my fibro chair all day long. Now, I will be the first person to stand on a soap box and tell everyone that has fibro and gets down on themselves for not being able to do certain things.. to knock it off! It is not your fault!
That is the one of the best things you can remind yourself as you go through all of this...it is not your fault, so try not to take it out on yourself. That is what I was doing for the last 3 years and it made matters alot worse.

I hope this might have helped in anyway, keep coming to the forums everyday...even if it is just to read posts. The people here are one of the best support systems anyone can have.
Love & Soft Hugs,
Stacy

Dx with: CFS '09...Fibro '02...Myofascial Pain '02... Gerd '03...Migraine Headaches...
Restless Leg Syndrome '08...IBS '99...Depression '99...
Early Menopause from Hysterectomy '00..removal of gallbladder '00 and appendix '08

Meds: Fentanyl Patch 75mg,Lidocaine Patch 5mg, Ropinirole 1mg, Zoloft 50mg, Aciphix 40mg, Darvoct as needed to help with RLS, Aleve & Tylenol as needed


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 11/4/2009 4:24 AM (GMT -7)   

Hi, Cat, and welcome!  Boy, you have been through an awful lot...especially considering your age!  I'm so sorry you have had all of the health problems but perhaps you are now on a better road to better health.

Fibro is a real pain...literally!  But, the goal is for you to have control over fibromyalgia.  If you don't, it will control so many aspects of  your life.  You will find things that can help with the pain and that will help you work around the fibro.

Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibro.  You can learn a lot there and this can help you, too.  There are also links that can help your husband try to understand what you are going through and that, yes, this is a very real and very painful condition.

GENTLE massages help with fibro.  There is no way I would allow someone to massage me that didn't know what they were doing.  You are just asking for more pain!  My massage therapist has studied fibro and knows how to massage people with fibro and not cause more pain.

Laying or sitting too much will make you stiff as a board and will cause more pain.  You do need to keep moving.  There are some good gentle stretching exercises in the Fibro 101 thread that really do help.  Also, gentle exercises are wonderful for fibro.  My form of exercise is walking.  I have a pool so I swim too so, if you have access to a pool, that is a wonderful exercise, too.  I walk a mile each morning before breakfast and sometimes later in the afternoon, too.  The exercise raises the serotonin levels in the brain and that helps with the pain and also with depression.  I always feel better and have more energy after my walk.

I use malic acid/magnesium supplements and vitamin D3 to help with pain and fatigue.  Many people with fibro are deficient in these vitamins and nutrients.  I live in Florida with all of the sunshine and I'm taking 3,500 IU of D3 a day and I'm still not quite up in the normal range!  I see that you are deficient in vitamin D, also.  There are links about malic acid/magnesium supplements and vitamin D in the Fibro 101 thread. 

I also use ibuprofen with food and extra strength Tylenol but see that you can't take these.  But, keep searching.  You will find what works for you and you will get your life back!  I've had fibro for over two decades and have had a full and enjoyable life in spite of it.  I keep a positive outlook and look forward to each new day with anticipation and that helps, too.  Also, I keep busy and when I focus on something else, the pain fades some in the background. 

I'm so glad you found us and joined our fibro family!  Don't hesitate to ask questions because we are here to help you.  I'm looking forward to hearing more from you soon.

Sherrine

 



Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 11/4/2009 4:27:49 AM (GMT-7)


cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/4/2009 7:11 AM (GMT -7)   
Thank you both so much for your response. i slept long last night, but not good. my shoulder and neck are feeling better though.

i have fibromyalgia in my family. my mom has had it for well over 10 years but at first was diagnosed with lupus. we live in arkansas which is home for the world renowned fibromyalgia treatment known as the modern "surgery without a knife" that retrains the brain and they hydrate and stretch the spinal vertebrea. she is doing soooo much better. not as better as she expected to with the price she paid, but better. sometimes i have to remind her what it was like for her when she was really really bad. my mother is extroadinary and is a fighter like the two of you. fortunately she has a very understanding job so she never was even threatened with "being let go". sometimes she wants me to just get up and go, and i see her point. but i can't seem to do it like she does. when i was still at home, she would miss work 2-3 days a week and she could only manage a 20 hour work week. she also made dinner in "session" peel the potatoes in the morning, brown hamburger early, that type of deal. she was unable to move, and now she barely has symptoms. because of the lupus it was hard at first because she was fatal. but now, of course, we prefer the diagnosis. i have her genes, so most of my problems are genetic and we share soo many of the same symptoms.

i agree that i really do need to do something for my depression, and i will consider another route. my husband does not believe in medications, and i used to be a person who didn't want to take medication either. i see my grandparents on my father's side, who are in their late 80's and only take an allergy pill and still live on their own, and they are healthy. then i see my mom's side of the family which the family tree is down to a twig, with only her and her siblings still alive. and one aunt, everyone else is dead from cancer.

so, i know that getting out helps with well being and everything, i just lack motivation to do it and each time i mention to my husband that i need help he tells me that i'm fine, but he also complains all thetime about how i am. i used to be so strong, and i think they expect me to be stronger than i am right now. i need help, it has been a year since my hysterectomy and i am finally coming to terms with it. if everything would not have happened in the way that i did, i could have recovered, i know that, and i will recover but the sequence of events and the year of trauma and surgeries, and losing my fertility immediately after being pregnant for the first time in 7 years, was just too much. my husband and i were together in high school, early, i was 13 he was 16. then i got pregnant immediately after hs, but we were in different walks of life so he didn't even know he had a child. we are married now, but it's a long story. needless to say he never held a newborn at all until he knew i was not likely to have any more children. then he held my niece. before that he was waiting to hold his own baby for the first time. and even though he doesn't like to admit it becase he tries to be strong for me, he wanted a big family just later when we were more settled. now he and i both try to focus on the one that we were so blessed with. he is an awesome father. but you can see why it would depress me. i was soooooo drugged up through all of that with pain meds, that i wasn't coping at all, it was just happening and happening and happening....and still happening with the fibro although things are much more quiet now.

i only had one dr that specifically said that and it was recently. i saw an internest because of vomiting for 6 weeks. he said that and i have a hard time going back to him now. my mom took me to the apptmnt and she wanted to kick him too, but she expects me to follow up with him.

thank you both for posting. i think i will make an apptmnt with a counselor in the next couple of weeks. i do have access to a rehab facility with a heated pool and fibro treatment, i'm supposed to start that soon. hopefully the sleep study will help too as i've begun to show signs of rls, which is painful and irritating.

looking forward to talking to you all more.

thank you
cat
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