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Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/18/2009 9:34 AM (GMT -7)   
Just a few days new to HW. I'm Rachel. Having a very hard time right now.
 
My body is deteriorated so rapidly. I feel like I'm dying. My GP and now the Rhuematologist have juat diagnosed me with fibro. I don't understand how this disease could take someone down so fast. Each day is way worse than the previous. Every office visit brings yet another new drug. They're doing more bloodwork and probably sending me to an Endocrinologist. Today I see a Neurologist. This is happening so fast.
 
I'm a single mom of a 3 year old. I can barely manage her these days. She doesn't understand at all. I try to explain it. Although we're married on paper, her father is completely out of our lives. No support whatsoever. I'm so scared about our future. How will I support and care for my girl? My family is not emotionally or financially equipt to help, other than to provide a tiny room in a highly dysfunctional house at a cost. The Unemployment will run out in a few months. I'd planned on starting a new job, but now wonder if I shouldn't just try for disability. I'm very clear that, as of today, I'm completely unable to work. I'm feeling very hopeless today, which I'm sure only makes the symptoms worse. I shake and cry. I'm so scared. I don't understand what's happening. I've tried to do as much research as possible. But, I can't seem to wrap my brain around the idea that there's no cure.
 
 
Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller


crazyoldcatlady
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 9/18/2009 9:56 AM (GMT -7)   
Rachel,
I can certainly understand you statement about it being difficult to wrap your brain around the idea that you have something "uncurable". That news can really mess with your head for a while.

I'm glad you found this forum. It is a great place to get things off your chest, and find friends who understand what you're going through. You will find it to be surprisingly helpful as you figure out how to live life with fibro!

SSD might be a good idea for you if your doctors agree that you cannot work. I don't know about your marital situation but I would think you could legally force your "husband" to pay support of some sort. It's hard to deal with those sorts of things when you don't feel well but it would be worth the effort to get some sort of court ordered support out of him. I know every state's laws are different for that stuff so you would have to check into what's available to you.

I'm sorry you are in such a bad situation. Stress like that from financial or family problems can cause fibro symptoms to be worse. I don't have any magic answer for your right now but I wanted you to know you've been heard.

{{gentle hugs}}
Donna
 
I would be unstoppable...
                           if I could just get started.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/18/2009 10:01 AM (GMT -7)   
Hi Rachel, I am so sorry that you are going through so much. It does sound like your GP
and rheumy are working together to help you. Doing the bloodwork will help to find what you
need to improve. I know that this process can be frustrating and exhausting, and scary too.
Believe me I have been there. Hopefully you will get the help you need. Finding good docs
is half the battle. Your doctors seem to be looking out for you.

I know how difficult it is to wait for a dx. Try to take one day at a time, it is so much easier.
Added stress is not good for you. Believe that things are going to get better and do what
you can to help yourself. Spend some fun time with your daughter and try to relax.
Sending gentle hugs and prayers your way.

Hugs

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


Wishst
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 9/18/2009 10:07 AM (GMT -7)   
Dear Spendidlife,
 I am not new to HW, I just never post and have really been helped out by reading all the wonderful encouragement on here.  Your post compelled me to start writing here.  I'm so sorry you're having such a hard time with this.  Sounds like you have your hands full!  You've come to the right place though for support!  There are so many experienced loving people here.  I can only tell you a little about my story with fibro.  I was diagnoised three years ago.  I had gone through a lot of stress that past year, and I was in so much pain and couldnt get out of bed, much less work.  I dragged myself to work though and every night I'd come home and go to bed until I had to get up the next day.  I stayed in bed all weekends.  My kids are grown, so  I am lucky there.  But I felt like all I needed was to get rest and then I'd be fine.  It never happened.  No matter how much I slept or stayed in bed I never felt better.  I went to my primary care who refered me to my rhem.doc.  To make a long story short, I got adjusted to meds, started to feel less pain and was able to funtion a little more, but I did take a leave from work, tried to go back and found I just couldnt, so I did appy for disabilty, private and social security.  I got both, but I did get denied the first time as SS, which is very common, in fact being turned down numerous times is common, But the one point I wanted to make was that DON'T get discouraged, it does get better!  The one thing you have to learn with fibro is to pace yourself.  If I remember right a three year old if full of enegy and always wants attention.  Try going for a little walk, exercise, believe it or not is good for fibro,in moderation!  Keep going to your doctors, if you don't agree with the meds they're giving to you talk to them, it takes a while to adjust not only to a med, but the fact that you have to take something!  You're also right, stress does seem to  make the symptoms worse.  Just remember, you're not alone!  You'll have bad days.....but you'll also have good days too!  Good luck with everything. 
Gentle Blessing
Deb

Jhemi
Regular Member


Date Joined Jul 2009
Total Posts : 223
   Posted 9/18/2009 10:52 AM (GMT -7)   
When I was first diagnosed with Fibro I also had a very hard time...and it seemed my pain was getting much worse. But then I realised so much of it was due to stress. Going to the doctor is stressful and I'm one who abhores needles so just the thought of having bloodwork was stressful. Also getting ready to go...getting there...waiting to see what it is. etc..

I can't imagine having to care for a three year old and do this as well.

Know this though that it does get better as we eliminate the stress from our lives and just knowing that you do have fibro will make a world of difference. Think good thoughts...go for a small walk with your darling daughter and get some fresh air...a little exercise goes a long way with us.

Jhemi

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/18/2009 11:08 AM (GMT -7)   
Rachel, I know things look bad right now but they will get better.  First of all, the situation with your husband, I totally agree that you should be getting financial support from him and so should  your daughter.  If he isn't living with you then you could file for separation.  I'm not sure how the finances work in those situations but you could find out pretty easily.  The bottom line is, you two have a child together.  That child should be supported by him.  If you were divorced, he'd have to pay alimony, too, I think.  I never went through that so I'm not great at giving help here.  I'm sure others on the forum will pitch in with this topic.
 
As far as working goes, you might be able to work.  We have quite a few people on this forum that work.  I worked in a photography studio after getting fibro and, since you have your child to look after, you have to seriously consider it.  Rachel, right now you are soooo depressed.  You have so much going on and it seems overwhelming to you.  All this depression and stress are causing you a lot more pain.  When you get a plan in the works and get some medication to help you, you should find that the pain will ease up.  Think about things that you are capable of doing.  I know your daughter is tiny so maybe you can watch children at your place to earn money.  We have a few that do that.  This way, you are still home and your daughter has kids to play with.  Or, if she goes to nursery school, maybe you can be the teacher's assistant.    Perhaps, when your daughter goes to school, you can be a teacher's assistant there.  If you need to take courses, you could do that on line...and start now so you are prepared.  Or maybe you could work in the school office or the cafeteria, etc.  These would be ideal because your time off and your daughter's time off would coincide.  I'm just throwing out ideas to get your mind thinking.    
 
I may not know much about child support problems or what work you are skilled to do but I DO know about fibromyalgia,  For me, it hit me smack between the eyes one night while watching television!  My toes started to ache, then my ankles, then, knees, etc.  It worked it's way up my body in about 20 minutes.  When it got to my elbows...oh, WOW!  You know, when you hit your elbow and you get that shock down your arm and you think you are going to pass out?  Well, that happened in both elbows and stayed that way for over two weeks!  I honestly couldn't do anything and just cried so much.  I have three children and they were ages 9, 10, and 13.  It wasn't easy.  (I have another illness that kicked in when my children were tiny....6 months, 1 1/2 years, and 4 years old so I know how hard it is having young children when you have illnesses.)  But, you know what?  I have ended up living a full and enjoyable life with fibromyalgia and we will help you to do that, too.
 
Fibromyalgia has flares and you are truly in a lot of pain but these flares don't last forever.  My longest flare lasted six months.  Sometimes they last a day or two.  You just don't know.  Then you start to feel better.  We usually get flares from overdoing or from weather changes.  Barometric pressure seems to play a big part in how we feel.  Sometime  you have a flare for no reason!  But, just learning about fibro and having some understanding of it does put you in control.  You really need to be in control of fibro...not fibro being in control of you.  Also, once you find medications that help you keep the pain under control, you will have a much better outlook.
 
Fibromyalgia is not considered a progressive illnesses, so that's great news!  I've had it for 22 years.  Once I got control of the pain, I was doing pretty good and now I am only a touch worse than that...and some of that (maybe all of that) could be that I'm older (62) and aches and pains come with age.  But, it is extremely important that you keep moving.  If you sit or lay too long, you will be stiff as a board.  I use gentle stretches and then I walk and I swim.  I didn't know this when I first got fibro.  I didn't have support and I didn't know how to use the computer at the time.  I was so busy raising my children I never took the time to learn.  So, I sat a lot because I didn't seem to hurt as much and I thought that was the right thing to do.  But, not with fibro, I found out!  When I did start moving around, it hurt but then I saw I could do a little more the next day, and so on.  I started getting a little more energy, I could move better with less pain, I could get some things done, and started having a better frame of mind because of it.  I saw that I could do most things I did before developing fibro.  I just had to find ways to work around it.  I know one member mentioned pacing yourself.  That is soooo true.  You can't do things in the same time frame as you did before fibro.
 
I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 for my pain and fatigue.  I know I sent you to the Fibro 101 thread before so, if you haven't read it, I would suggest that you do.  You will learn a lot that can help you out. 
 
Hot baths and showers help a lot and so do Bed Buddies.  You can find them at Walgreen's and other places or you can make one by taking a tube sock, filling it 2/3's full of long grain rice (not instant), and tying a knot at the end.  Pop it in the microwave and it gives off moist heat due to the moisture in the rice.
 
Take your daughter for a walk or to the park.  While watching her enjoy herself, take time to look around at all the wonder around you.  We all have blessings if we just open our eyes and see them.  Your daughter is a huge blessing and I'm sure I'm not telling you something you didn't know!  Just concentrating on some of the goodness in your life helps with depression.  Many with fibro do suffer from depression...after all, being in chronic pain will depress  you.  But, try to keep one step ahead of depression.  If you have a negative thought, replace it with a positive one.  There are always two sides to everything.  We just need to choose the good side and it really does help with the pain.
 
I do hope you have a better day today.  Make a list of what you need to do and then check it off when you are done.  Just seeing this shows your accomplishments and will help too.  Don't hesitate to ask questions because we want to help you.  Hope to hear 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) : 9/18/2009 3:04:41 PM (GMT-6)


Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/18/2009 7:48 PM (GMT -7)   

Thank you so much, Sherrine, Jhemi, Deb, Robin and Donna, for your kind and extremely helpful words. Yes... this IS a very loving and supportive online community. I had such a long day. Hour and a half drive to the Neurologist (who thinks it's RSD and wants to add even more drugs that knock me out). Back up there in a week for an EMG. It seems that I'm at my worst in the morning (which makes more sense, having heard your comments about inactivity making it worse). The depression and anxiety are at their worst at that time as well.

Savannah's dad (my "husband") is an illegal Brit, who's been living under the radar for years. I did get an order for child support while we were still in CA. They weren't interested in his status, as long as he paid. Well, he didn't. Since we moved back East (it'll be 3 years in December), I've received a total of 4 payments. He's always had a sob story about how he can never get ahead... Actually, it's true... he's penniless. Before my daughter and I moved back East, I was going to sponsor him for his green card. I couldn't show 3 consecutive years of tax returns, so that was that. We married long after we'd already split up only to try to get him legal and more in a position to help support our daughter. Actually, he'd already left me way back when I refused to have an abortion. Yikes! This is quite a soap opera. So, then after about 3 months into my pregnancy, he contacted me, saying he wanted to be a part of our daughter's life. You know, even after she and I moved back East, when he couldn't send money (I was working and barely self-sufficient), I still encouraged him to stay in touch with our daughter. Instead, he decided to feel sorry for himself, saying our girl would be better off not hearing from him and that it would only confuse her. Either way you look at it, I'm on my own. He has nothing for the courts to order given to us. At most, he'd get deported. What sucks is that he knows full well that we're going through a tough time (I emailed him several times). He's not responded, nor have we spoken since April. I know he has internet connection, because I see his activity on facebook. I can only see him as a coward, at this point

My Unemployment isn't enough to pay for a place of our own. So, we're paying rent for a tiny room at my sister's... both of us in one single bed. My daughter had her own room plus a playroom in our house before all of this. She's been very fearful since we moved and is literally attached to my hip. My sister has little patience for her, so we're out all day (my sister works at night). We keep very active (except when I have really bad days). Today would have been one of those days, but I had to get us out for my Dr. appt. My head is better. My left arm is in agony. I can deal with that... It's the depression that takes me out. I totally get that seeing and enjoying the blessing of my daughter is THE best medicine. She's got SO much energy. I feel like such an old lady these days. I used be the mom jumping on and climbing all over the monkey bars. Like... the only one. I still go down the slide, though.

I would LOVE to be a teacher. I have my MA in Psychology and my BS in Geology, but no credits in Education. I hear that Science Teachers are in demand. What I'd really love is to be a elementary school art teacher. I used to be a Counselor then a Director in Residential Dual-Diagnosis Treatment. I just donn't have the skin for this kind of work anymore. Having my daughter smoothed off any remaining hard edges. For that, I am eternally grateful.

It's encouraging to hear that Fibromyalgia is not considered a progressive illness. It, however, has been getting progressively worse for me... and quickly. That's because I'm seeing it from the perspective of it's beginning. Had no idea it could come on this fast. Sherrine... It must have been so frightening for you to feel it spread up your body that rapidly... without knowing what was happening to you. Wow!

Eliminating stressors is impossible, at this point. How I deal with them is what's going to be crucial. Just having you're input and your hearts to listen and understand has made a huge difference. I was really looking forward to getting home, so I could check this Forum and... there you all were.

Thank you so much. You're all so lovely!


Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller


watashi
Regular Member


Date Joined Sep 2009
Total Posts : 84
   Posted 9/19/2009 12:24 AM (GMT -7)   
Some days it is overwhelming, after all the scary doctors i think i gets better, but i know what you mean when you say how frightening it is when it just seems to come on out of no where and so very fast. I'm a control freak so when i started this journey it was bawling panic attacks and blaming me cus sometimes i could bearly drag myself from bed. I think it would be cool to teach too, but ya i'm not really socially out going in the real world. So many different ways this can be managed though I hope soon they find ways to help. Though i too am new here this has been a huge help!! Everyone here is beautiful. Plus i collect comedy anime well and others sometimes at the end of the day when i'm so tired sore and depressed nothing cures like strange comedy and nice warm tea... especially chai lattes mmmm so tasty.

Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/19/2009 3:34 AM (GMT -7)   
Yeah, Watashi...
 
Bawling panic attacks susinctly describes my moring yesterday. Now, the sun is coming up on another day and I'm racked with pain again. I've taken a muscle relaxer and am waiting for the storm to subside. I know this probably sounds like I'm losing it... But, it feels like I'm being cursed. This, coming from a non-religious mental health "professional", albeit unemployed and about to beg for something greater to take the reins. I really took for granted having control (or  believing I did) of my body before all of this. Now I just feel like a sad and ridiculous marionette of pain and clumsiness.
 
A chai latte sounds mighty good right about now.



Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller

Post Edited (Splendidlife) : 9/19/2009 4:38:32 AM (GMT-6)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/19/2009 6:26 AM (GMT -7)   
I know, everbody tells you things will get better. I was one who thought they could not
get any worse. My entire body wracked with pain, I was in emotional despair and just
about given up. I write poetry as a hobby. Going through my journals, I found this poem.
Reading it now, it is hard to believe that I had written it.
 
Prisoner of Pain
 
Bound by the misery of unending pain
I am a prisoner, a prisoner of pain
feeling tortured, trying to remain sane
 
Each day I wait hoping for relief
Praying today I'll be spared from this grief
 
Robin
 
What changed for me was focusing on the positives. I still hurt, but I didn't like who I
was becoming. I always considered myself a strong woman and I was mad as Hell
that this illness was taking over my body and my mind. I wasn't going to let it win.
Each day I focused on what I could do to help myself and slowly each day became a
little easier. Today, I am more at peace with myself and hopeful. I still am not pain
free but I do not consider myself as a prisoner of pain.
 
We are stronger than we realize!!!
Robin
 
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/19/2009 9:14 AM (GMT -7)   

Amen to that, Robin...

I can clearly see how my negativity and self pity has taken me down faster than anything else. This morning, I awoke to pain and unbelievable stiffness. Instead of going straight to panic and tensing up even more, I slowly stretched my way out of bed. Thanks to the encouragement of all of you, my day is going better. My daughter needs a happy and sane mommy. Whatever it takes, I'll make it through.


Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller


CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1431
   Posted 9/19/2009 11:24 AM (GMT -7)   
Hi Splendidlife,
Sorry you're going through such a rough time. How are your periods? Is it possible that you are close to perimenopause? I know you have a young child, but you could still be near perimenopause. I only ask because that time in my life caused me so many pains and problems and fatigue.

Wishst
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 9/19/2009 11:29 AM (GMT -7)   
Hi Rachel,
I'm so sorry that today you are in so much pain again! Have you started on any anti depressents? Im sure you must be aware of all of them in your profession. I was on paxil at first which saved my life. That was the worst feeling in the world when I started into my depresssion over twelve years ago. I hadnt been dx with fibro until three years ago. The pain is really bad with this, but the pain of depression is so much worse, at least for me it was, because I couldnt control my feelings! H had everything to live for, a DH, three great kids, but I didnt care about them. Well Paxil came through for me, after much detrermination I wasnt going the med root. Now I'm on Cymbalta which has made a world of difference in my pain from the fibro. It's also working fine on my depression.

Have you tried hot showers, that really helps my pain, in fact I have a shower seat that I sit on just to let the water run all over me and don't have to stand. Also heating pads help or those heat pads you buy in the store, but they can get expensive.

I can't imagine the headache you'r going through being a single mom and the history behind it! Sounds like you have a really good background in education and it may be only taking a few courese or even tests that you have to go to teach. My son is physical education and health teacher and he loves it. Just in his second year, but he started out in exercise phys and went to grad school to be a teacher. I know in vocational schools you can get a job teaching and be working on your certification,so when your feeling a little stronger (and you will) look into what it will take! You sound like a very strong person. Your daughter is very lucky to have a mom like you.

Sometimes that pain can go away just as quickly as it comes, but don't get discouraged, it does come back, that's the fibro playing tricks. So when you have a good day enjoy it! Don't worry though there will be good days ahead! I'll keep you in my prayers!
Deb

Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/19/2009 11:46 AM (GMT -7)   

Thanks, Deb...

Actually, I had been on Prozac for almost 20 years until last November, when I completed slowly weening myself off. All was well until I lost my job in April. I can't help but wonder that, if I had been on the Prozac through that, the stress wouldn't have taken me down like this. I started back on the Prozac about a month ago and am also 5 days into the Savella, which has a double purpose. Still shakey as heck, but hoping for the best.

 

Cathy...

Yikes! Hope not.

All the women in my family went through menopause very late in life (well into their 50's). All were very late bloomers as well (myself included).

My periods are regular, however, they used to be a full 28 day cycle and, since this Spring when all the s--t hit the fan, they've shortened to every 21 days.  Thank you for reminding me of that fact. I failed to let any of the doctors know that piece and will now tell them.



Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/19/2009 12:48 PM (GMT -7)   
Rachel, there are alot of us pulling for you.

I am on savella too. I am taking 50mg 2x daily. It has really helped with the burning, muscle
achiness. I was lucky that I had no bad side effects like the nausea ect... I did have to wait
7 weeks before I found noticeable relief. I almost quit taking it a month after I started it but
I am sure glad I waited. Hope the Savella helps you too !

I wanted to applaud you for being a good mom to your little girl. It is not easy being a single
mom. I know because I was a single mom to my daughter for the first five years of her life.
I had no support from her birth father. I met and married a wonderful man who adopted her.

Hugs

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


beanley
Regular Member


Date Joined Sep 2009
Total Posts : 124
   Posted 9/19/2009 7:14 PM (GMT -7)   
i can totally relate to feeling cursed. i just can't understand sometimes why me? what did i do to deserve this. my therapist and some very wise friends helped me see why not me? who said i was exempt?

pain is part of life. suffering is optional. with the right attitude of gratitude it's easier to accept the pain but not let it define you. i hate fibro but i love my life.

beanley
fibro, migraines, ibs


summergrl
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/19/2009 7:55 PM (GMT -7)   
Hi I am new here as of today, i wanted to start a new post but did not know how. I was told i had fibromyalgia 12 yrs ago. i am 46 yrs old woman. I have suffered greatly. Especially in the beginning. Not knowing why my body was falling apart. It was frightening. And ya know after all these yrs , it still is , to me any way. I thought i had it beat when i was 40 yrs old. I went on a very strict diet , on my own, And i really dont know what happened but i got better 98 percent better. i was pain free. I was just starting to sign up for kick boxing lessons and a week later i was in bed,. I have no idea what happened. Here my miracle was gone. Now im at the worse of it. if it is still justy fibro. New painful aches and pains, ones i have never had before. I am scared to death, i need others to talk to. I hurt so bad especailly my head. i cant even ie it down on a pillow, im going throughh so much and no one understands , my mom did but she passed away 2 yrs ago. I had an mri on my brain for the bad headachess 2 yrs ago, and my neuro doc said i have a brain disease. He said hes not sure if its MS or Lyme Or something else but he wants to do a spinal a lumbar spinal on me. To me that is the most frighteneing thing to hear from him. I was in p/t from April to the end of august for a bulging disc in my lower back. i have so many strange symptoms from fibro im so scared to have the spinal i live with enough pain. I am afraid it will leave me with so many more things and issues, that i just dont think i could dela with. I have beeen with the same man 23 yrs and its finally tearing us apart. I am a strong person , but all of a sudden all these new symptoms and pai n i feel like im going to become a cripple and im scared it feels like the pain i have in my head will never go away. i dont know if im panicking or if ,,, oohhh i dont know im afraid to have th elumbar spinal Please some one talk to me. I am all alone with this i feel like im fighting for my life here and my sanity. my doctors just say they dont know how to help me honestly i dont think a spinal will. anyone who has a few moments to respond please do, i have been battleing this for 12 yrs i think im finally losing this battle. thank you Maria

Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/19/2009 8:21 PM (GMT -7)   
Thank you so much, Robin...
 
I'm so glad to know that about the Savella. The Neurologist told me to give it a month. I'll give it more. My GP said that my insurance wouldn't cover it (gave me a 2-week sample starter pack). Hope it's not too pricey. I'm going to call my insurance on Monday to verify that it isn't covered. I can already feel it improving my mood... seems less effective in the morning. The only side effect I've felt is already over...  Just felt a little speedy.
 
The freakiest part of all of this is never knowing what to expect. It's like a shape shifter inside the body.
 
I'd love to meet someone who would love my daughter enough to wish to adopt her. Kind of feel like meeting someone is out of the question now. I'm covered with white spots and have had a pained expression on my face that seems almost permanent. I know it's not quite that bad. At least there's no spots on my face (that's the Vitiligo).
Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller


Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/19/2009 8:36 PM (GMT -7)   
Oh, Maria...
 
I'm just a few days new to this forum and, already, have received so much love and encouragement. The information has helped ease the panic tremendously. Do you have anyone to advocate for you... someone who will go with you for the spinal? I sure do understand the longing for your mother's support. My mom passed away 3 and a half years ago (just 3 weeks before the birth of my daughter).
 
Please know that you are not alone in this.
 
Hugs,
Rachel
Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 9/20/2009 4:34 AM (GMT -7)   
Hi Rachel and all! I haven't had a chance to respond to this yet because I've had the flu this week. Tonight is the first night I feel good.

Rachel, you express your feelings very well. I admire that. You said what I'm feeling - when I get overtired I start to feel sorry for myself, I immediatey wonder if someone put a curse on me. My illness has been a fast tumble from bad to worse, before my diagnosis, and am starting to feel better thru medication and diet. I'm on my third round of meds and now take Cymbalta, gabapentin, Baclofen, and Tramadol. I'm almost at the point where my pain is leveling out, so I can start a swimming/ gentle exercise plan. I realized I could think and wonder and fret about a curse, who put it on me, how do I get rid of it, why someone would curse me, and then I'd be getting paranoid and self-conscious, and the stress would cause more pain... or I could refuse to give that curse any attention and power, and use that energy on something I CAN control.

Welcome to the forum! I was dx in February so I am kind of new to fibro as well. This is a warm, nurturing place where we can all help each other.

CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1431
   Posted 9/20/2009 7:40 AM (GMT -7)   
Splendidlife.........I would definitely look into your hormone levels. The first thing that happened when I began perimenopause was to have shortened times between periods. Its just a suggestion, since I think some of us are sooooo very dependent on our hormones that when they start to wax and wane, we can feel just horrible.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/20/2009 9:01 AM (GMT -7)   
Hi to all the newbies and welcome to the family. When I was given the dx of fibro many years ago it was devastating to me. I was a "I can do anything a man can do but only better" kind of woman and proud of it. I knew something was wrong but figured it would be something I could take a few pills for and be back to my old self, wrong. If you have a history of depression getting the dx of fibro can very easily depress you, I have the history of depression and anxiety. I was already on anti-depressants and it still depressed me. I know it is a big pill to swallow but the sooner you accept it the better off you will be. I wallowed in self pity for quite awhile and it didn't help one bit.
 
Many with fibro have a low serotonin level so anti-depressants does help. Low vit D can cause depression and many of us have low vit D. so it might be a good idea to get it checked.
 
Rachel, it sounds like you have hit bottom so there is only one way to go and that is up. Some times analyzing our lives and making plans to change the things that we can change makes us feel better and gives us hope. You have the education to find a job that you can handle so think about what it is that you would really like to do and that would be easier on your body. Then make a plan to get out of your sister's house and on your own with your daughter. If you need help from the state to get back on your feet take it. I think once the meds kick in and you have a plan of action even if it is baby steps you will find the fibro is better cause we all have to keep moving forward and have hope to feel good about ourselves.
 
I wish you all the best of luck.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/20/2009 9:10 AM (GMT -7)   

Thank you, Littleneck...

Yes... it does make a huge difference to use energy on things that are in my control... Like getting out of bed and stretching my way into some motion. Like getting on this forum and connecting with so many knowledgable, dear and brave people. I sometimes ask what the pain has to teach me and it occurs less like a curse... more like just an experience. All these new "experiences" can almost be viewed like new aquaintances whose nuances are just being discovered (painful as they are). This way (I hope), there will be less resistance, faster acceptance and, consequently, less pain. The mind can rule like a tyrant or be utilized as a useful tool. I've seen both sides.

Dx in February... How long did it take your doctor to put it together?


Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/20/2009 10:07 AM (GMT -7)   
Hi Rachel! I just wanted to welcome you to the forum. You have already had wonderful advice in the previous posts. And I just know in my heart that things can only get better for you. You are already well on your way to improving your pain by adjusting your view of fibro. Acceptance and then a fighting attitude that fibro was not going to rule me anymore were my way out of my darkness. And the one thing that I have learned over the years, is that the only constant in life is change. I have been at the bottom 3 times before this, where I thought all was lost. But we adapt, we change, situations change, and things eventually improve. I wish you the best.
possible fibro and trigeminal neuralgia
50 mgs amitriptyline


Splendidlife
Regular Member


Date Joined Sep 2009
Total Posts : 46
   Posted 9/20/2009 10:43 AM (GMT -7)   

Thanks, Marlee...

I have low vit D, so have been taking D-3 1000 mg. for 3 weeks now. I've been depressed since I was 3 years old. Wasn't treated for it until I was in my 20's. Now, 20 years later and after going off of Prozac completely for 9 months, I'm just now picking up the pieces. I read that taking Savella and other SSRI's should be avoided so as to prevent "Serotonin Syndrome". Every doctor I've seen so far has had nothing to say about it. If anything, the added Serotonin has helped. Taking 80 mg Prozac once daily and 50 mg Savella twice daily. In just a month's time, I've become a walking pharmacy. Between the Doxy for possible Lyme, Lodine and Mobic for inflamation, Soma for muscle spasms, Prozac, Savella and plethera of suppliments, it's like I've become instant geriatric.

I thought I was doing the right thing by trying to get off of Prozac. Didn't want to be dependent on it for the rest of my life. Now, look at me.

As for me getting help from the state... I'm on Unemployment and will not be eligable for "Welfare" until the Unemployment runs out. I was told this by phone. It was suggested by a friend that I go to the Welfare office, in person, to at least fight for housing assistance. Even if I wanted to, I couldn't pursue disability yet, or I'd loose Unemployment. I feel kind of caught. Even though I have a Masters Degree, I hold no license or certificates. Only 10 years experience is in Dual-Diagnosis Treatment. This is THE last thing I need to be doing now... Don't ever want to go back to that kind of work (talk about depressing). Have another 10 years experience in Veterinary Medicine. Loved that work, but it's highly physically challenging.

I look in the paper for cheap rentals... they just don't seem to exist. We could get into a Winter rental, but then would be seeking housing in the Spring at the most expensive time. Who knows if I'll be able to make a move by then... So, as you said, once the meds kick in, I'll probably have much more clarity. I'm told it could take as long as 8 weeks. I'm just hunkering down until then at my sister's. As funky as it is staying here, I'm grateful to have had a place for us to land. My daughter's made some little friends and I've befriended one of the mothers (whose dear friend has Fibro, so she's very knowledgable and understanding).



Rachel
"You never change things by fighting the existing reality.
To change something, build a new model that makes the existing model obsolete."
- R. Buckminster Fuller

Post Edited (Splendidlife) : 9/20/2009 11:47:21 AM (GMT-6)

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