My life is falling apart and I don't know what to do.

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libertykitty
Regular Member


Date Joined Oct 2008
Total Posts : 111
   Posted 10/27/2008 12:39 AM (GMT -7)   
I developed joint and muscle pain literally overnight back in December of 2007 during finals of my sophomore year in college. I was diagnosed with fibromyalgia in February of this year. Since then, everything has been getting harder and harder.

I live in New Jersey but attend college in Maryland. When I came back to school this semester, it was immediately clear to me that things were different. In my classes, it was difficult to remember what the professors said even thirty seconds earlier. I couldn't answer questions when asked. I would stammer through an excuse and be really embarrassed about it. I was always a great student before. Even when I knew the answer I couldn't express it and I would just make my excuses. My anxiety kicked in and I started skipping class because I was too nervous that I would be expected to speak. Also, I noticed that I get tired far more quickly than ever before. I can barely make it across campus and back (the whole thing is inside a 2-mile-long circle of road) during the day. When I get back to my room I am exhausted and can barely feed myself before sitting and trying to do something that doesn't require thought.

I was registered for five classes and dropped two of them in the first two weeks of classes, so that I only had classes on Tuesdays and Thursdays. I have a part-time job on campus working six hours a week sitting at a desk. I arranged it to be 2 hours a day Tuesdays, Wednesdays, and Thursdays to fit neatly between classes, physical therapy, and therapy. As time went on, I began having trouble reading. I can read for fun, but it's difficult to remember what happened in the beginning of the chapter by the time i reach the end. I vaguely remember how the story itself began. When reading for class, I can't remember the beginning of the sentence by the time I finish it. I can read a paragraph, or even a sentence, over and over and not remember any of it.

When I tried writing a paper I found that I couldn't. The words in my head wouldn't come out. It's like there's a block in my brain. When I needed to write about the reading assignments, I couldn't because I couldn't remember what they had been about or what the plot was or the overlying themes. I used to be really good at reading and writing and it's frustrating and devastating to me to be unable to do these things anymore.

Physical therapy has not helped me considerably after a month, but my therapist says that he's working on my core muscles which are really weak because I never use them, and I don't notice the difference everyday because I still don't use them. Counseling also hasn't made me feel any better although my counselor does think I have depression and anxiety. I have refused medications. I was on Lexapro for awhile earlier in the year but I didn't like how it modified my moods. When I started having cognitive problems I didn't know if it was the drugs or not so I decided to stop taking them. It took two weeks for me to get through withdrawal even after two weeks of slowly reducing my dose. In the end, I still have all the same problems.

I saw a neurologist but he thinks I have ADHD, which is impossible because I didn't have these problems until I was 19. My counselor says that you can't just get ADHD, you have to have it from youth. I never had anything remotely like an ADHD symptom until the past year. He is going to run a four-day EEG on me next month to see if two small arachnoid cysts in my brain are affecting me but he doesn't think that they are.

I am withdrawing from college for the semester, which is a really sad decision for me to have made. I don't feel that I am capable of passing my classes, and that I have no other choice. I am quitting the job that I love and going home for the rest of the semester. I fully intend to return in the Spring. If I am not better... then I don't know what I'll do.

I sleep 12-14 hours at a time. Less than 10 will make me wake up feeling groggy and I'll be tired all day. I've always slept longer than people my age, and no efforts so far have helped me develop a better sleep cycle. My problem with this is, I believe, that I sleep for 12 hours and am awake for 14, so I am on a 26-hour cycle. This obviously doesn't work.

My rheumatologist thinks that all my problems will go away if I get a regular sleep cycle and get treated for IBS. She wants me to train myself to sleep for less time, but I just don't see how this will help anything. I am a college student with morning classes and getting less hours of sleep has never gotten any easier even when it's a regular part of my routine for an entire semester. I refuse to be treated for IBS because, for one thing, I don't think that my problems are all that bad and, secondly, I have a sort of phobia of gastroenterologists. When I was little my doctor needed a fecal smear for something and I was rather traumatized by the whole experience. I'm terrified of the idea of a doctor sticking things up my butt or down my throat or anything, even if I'm unconscious. I don't feel that my problems warrant such measures.

I just don't know what I can do to make anything easier. I can't exercise because I am too tired and weak. Physical therapy doesn't seem to be helping that. I'm anxious and depressed and I'm so frustrated with a series of three counselors now that have not helped despite being very nice people that I don't want to have to go through the process a fourth time.

My mom and rheumatologist complain that I'm being too negative but I don't see anything that I have to be positive about. The only good thing is that my amazing boyfriend continually refuses to let me break up with him whenever I fall into a bad mood. I just have had no reasons to be happy when it feels like every problem I have is getting worse and worse every day. Everybody either doesn't believe me or thinks I'm making a big deal over nothing or tells me to do things that I've already tried and that don't work.

I feel like my life is falling apart and there's nothing I can do about it. The only things I can still do are watch TV, play computer games, and drive. I can sometimes go for walks, but I have to take breaks when my body starts to hurt. I can't read anymore, I can't knit, I can't do yoga, and the list goes on. My limbs are always so tired that it's hard to clean, cook, or anything. I hate showering because the steam makes me feel dizzy and if there isn't steam it's not hot enough (the high volume of steam is a quality of our shower head that nobody else will admit to noticing).

Oh, the last thing is that I apparently have a vitamin D deficiency. My level is 11.7 (normal is 40+). I have a prescription for supplements but haven't had a chance to get it filled yet. I don't know what difference this might make.

Does anybody know what I can do? Doctors I should see? I'm desperate to feel normal again.

Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 10/27/2008 1:49 AM (GMT -7)   
Hey Ms Lib- First let me say hello, welcome, and its great that you have joined us here. You'll find this site is wonderful, caring and knowledgeable.

I am sorry you are having such a rough time! I can relate to so much of what you described. My FM has progressed to a stage where I require several Rx and I appreciate what they do for me. Many, many things in my life have been altered to a degree so that I can prosper as opposed to just enduring. This has taken time, medical attention, support and motivation. This can and will happen for you, too. I am sorry that you have had to leave school, I'm sure that was a very tough decision for you- but I think you did the right thing and I support your decision. I would like to encourage you to use this time to visit with a mental health counselor. Listen to me carefully, please- I am not suggesting this because I think you are crazy. :) I didn't go this route until it was almost too late- it saved my life- I mean this. FM requires many adjustments in your life- and a counselor can help you prioritize the steps you can take to have a full life again. You mentioned 3 counselors- if these were mental health counselors, I applaud your going. Please try again if you haven't found the right person. You will have a fuller and more meaningful life if you allow others to help you. I understand being frustrated and discouraged. Go to the library and check out audio books- take them somewhere peaceful, and listen. See if your comprehension improves by listening. I too have experienced this problem, but the good news is that it went away as I got stronger.

Please keep us posted on how you are doing. We are here to help. Peace!
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 10/27/2008 9:42 AM (GMT -7)   
Hi, Libertykitty, and welcome to the fibromyalgia forum!  Gee...I'm not sure where to begin.  All that you have mentioned is part of fibro...even down to the Vitamin D deficiency.  I have that too.  And I think you are suffering from what we call fibro fog.  We have cognitive memory problems with fibro and can do some really dumb things.  One time I couldn't remember my phone number and had to get out my checkbook to see what it was!  That's not unusual either.  It is difficult when you are going to school but once you get control of the pain, the fog may get better.  I have good days and bad days.  You shouldn't be "foggy" all of the time...at least that's not been my experience and I've had fibro for 21 years.
 
Check out the Fibro 101 thread...the second thread on the forum.  You will find a lot of good info about fibromyalgia including a list of symptoms.  There is also a list fo stretching exercises.  These do help and are done sitting down.
 
You do need to keep moving.  If you sit or lay too long, you will be stiff as a board.  Walking is one of the best exercises for fibro.  Stretching exercises are good too.
 
Hot showers or baths help with the pain.  You might want to get a Bed Buddy.  It is filled with beans, I think, and  you can heat it in the microwave and it gives off moist heat for quite a while.  I have seen them at Walgreens but I'm sure other places sell them, too.  You can make a bag with raw, long-grained rice and it works the same way.  If you do not sew, take a tube sock and fill it about 2/3's full of rice and tie a knot in the end.  You can microwave this and use on the painful muscles.  I also see a massage therapist that give LIGHT massages and they do help me.  She knows all about fibro and has taken special classes to learn how to massage a person with fibro.  A deep massage would kill me!
 
I don't take the heavy duty drugs for fibro because they knock me out or make me feel weird and I would rather deal  with the pain instead of sleeping through my life.  I take ibuprofen and Tylenol for pain and I also take malic acid/magnesium supplements for pain and fatigue.  I started the malic acid routine last December and they have really helped me a lot and I don't have the fatigue like I had before.  I have more energy, too.  They don't work for everyone but there are quite a few members that have tried them and they have helped them, too.  There is a link in the Fibro 101 thread all about them and it also shows how it works in the body and there is even an article about a double blind study that was done using malic acid/magnesium supplements.  You see, we do have deficiencies that we need to replenish with fibro.
 
You might ask you doctor to check  your thyroid, too.  There are a lot of fibro patients that have hypothyroidism.  That can cause fatigue and memory problems, too.  Just a thought...
 
I know it's so difficult with  your trying to go to school but, when  you get the right help, you will be back on track!  We have people that have gotten their degree on line, too.  But, we are here to help you.  Don't hesitate to ask questions.  You can live a full and enjoyable life with fibromyalgia.  I know I am!  
 
I'm so glad you joined in and I hope to hear 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


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 10/27/2008 11:34 AM (GMT -7)   
LK,
 
Welcome to the fibro family.  You'll find a lot of good info here, and get a lot of support.
 
The more you read the posts, you'll find that everyone is different in the way fibro affects him/her.  There is no one simple "cure-all."  We all have varying degrees of pain, and we all handle it in different ways.  What works for one person might not work for another.
 
Anyway, I'm really sorry you've had to drop out of school.  Recently, I had to move back in with my parents because of being sick.  I understand your disappointment about having to stop part of your life.  Hopefully, it's only temporary.  I can really relate to not being able to put your thoughts into words.  It's like I know what I want to say, but something gets lost between my brain and my mouth.  And, ask anyone here, talking is something I love to do! tongue    BTW-I really doubt that this means that I have ADHD.  Like you said, I don't think ADHD happens overnight. nono
 
I also understand your depression.  I was first dxd with depression when I was 15, but I wasn't dxd with fibro until this year (I'm 36).  Did I have fibro when I was 15?  Probably.  But, in my opinion, depression & fibro go hand in hand.  I'm not saying that everyone who has fibro is depressed.  Have you tried another antidepressant?  I have tried just about everything until I finally found something that worked for me.  Like I said, everyone is different.
 
Before I moved home, I went to physical therapy and I think it helped a little.  But, I also think the human interaction helped, too.  I used to live alone, and while I prefer it that way, talking to people who understand helps so much.  So, I hope you'll come here often.  BTW-your boyfriend sounds very supportive.  I know when you're feeling bad, you want to push people away (I'm an expert at that, fibro or not).  But, if he is a positive in your life, let him help you and talk to him.  He might not completely understand-but if he wants to try to understand, that's half the battle.  I wish I had more people in my life like that.
 
Sleep issues seem common in people with fibro.  I'm on the flip side of your problem.  I rarely get more than 3 hours of sleep a night, and if I do get some sleep, it's broken up into 20-30 minute intervals.  In my opinion, if I could sleep better, I think I'd feel better.  Also, if I wasn't so stressed out and weighed down by the guilt and humiliation of moving home, I think I'd feel better.
 
So, if it helps, you and I (and a lot of us here) are in the same, very large boat.  Believe me, I know how hard it is to put on that fake smile everyday, even though you're hurting like hell on the inside.  It's hard to be positive when some of the people around you are dragging you into their negativity.  And, it's really hard to stay positive when you're constantly stumbling over roadblocks in your life.  My point is (and I swear I have one, LOL wink ), I hope you know that you aren't alone in this situation.  There are very few of us that go skipping down the road singing show tunes.
 
Anyway, I hope something I said helped.  If not, I'm sure someone will say something that helps.  There are some really caring people here.  I hope you find that out for yourself. :-)
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


libertykitty
Regular Member


Date Joined Oct 2008
Total Posts : 111
   Posted 10/27/2008 11:53 AM (GMT -7)   
Thank you for your support!

It is kind of humiliating to have to go home. For awhile now I've made a point of telling the truth to anyone who asks how I am (as long as I think they really mean it, anyway). But it's hard to explain why I'm leaving school, if only for now.

As for my thyroid, it was checked back in February and again last week and so far it's fine. The cognitive problems never go away. There is sort of a baseline and it occasionally gets worse than that but never gets better. It's there all the time, every day.

All three of my counselors were for mental health. The first insisted that I had been abused, which I had not. The second didn't listen to me at all until I had a panic attack and then she insisted that I had to be medicated. The third is really nice but after a month it still feels like she's just getting to know me, she doesn't ever have any suggestions even when I ask. I will probably look for a new one at home after I get settled in but I'm not really looking forward to it.

I think my main problem is that I don't want to take medications. After being on Cymbalta for a day (it made me so sick that I couldn't sit up) and Lexapro for about 4-5 months, I really have no desire to be back on an antidepressant. I didn't have side effects from Lexapro unless I forgot to take it, but I didn't like that I was always questioning how I would feel if I wasn't on it. I'd rather have the lows than be unsure about my feelings.

Tylenol, Advil, etc don't help my fibromyalgia pains. I take ibuprofen at least once every 2-3 days for headaches, and sometimes to help me sleep if I can't get comfortable. I'm not interested in taking a prescription painkiller.

I've tried acupuncture but after many months of weekly sessions there was no cumulative effect even though I felt great for 2-3 days after each session. I've also tried massage. I actually liked deep massage, because even though it hurt it felt better after. Most of my aches are in my back and they are very deep in the muscles. I'm not currently getting massages because the therapist was at school and I'm back home now, but we're working on finding me a new one here.

I do have books on tape, I listen to them on the 3-hour drive between home and school. It's easier to remember what the tape says because I'm not under any pressure to remember it, which is, I think, the main problem I have with reading for class. It's still not easy and I still can't remember the beginning by the time I reach the end. It does help to keep me from getting upset on my drives, which does happen sometimes, because I'm not just sitting there driving, I'm actually occupying my brain with something (I've made the drive hundreds of times by now and it's sort of an automatic thing, I don't have to think about where I'm going and what exit I take).

As a last note, my boyfriend is great. I especially like sleeping alongside him because his body is always warmer than mine, and when I press my back on him it's better than a heating pad. I suppose that's a little bit of optimism. ;)

-Sandi

Post Edited (libertykitty) : 10/27/2008 1:01:19 PM (GMT-6)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 10/27/2008 12:00 PM (GMT -7)   
Sandi, when I take ibuprofen, I take 600 mg at a time.  I will do this every six hours around the clock...if needed.  That's the hightest "safe" dose.  If I take 200 or 400 mg.  it does absolutely nothing for me.  Ask your doctor about it.  The highest safe dose for Tylenol is 4,000 mg.
 
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


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 10/27/2008 12:13 PM (GMT -7)   
Welcome to HW and the fibro forum
I have been recently DX well a bit ago now........

I have other DD that I do take pain meds for and they dont knock me out I am able to function but thats me
I really wish at times I didnt have to take all I do.....

I also take Ibruprofen( thanks Sherrine) and it seems to be the only thing that will help with the aches and pains .........

That thread Sherrine mentioned has great info on it
I have it printed out and have had my family read

I love the "Teaspoon Theory"

I DO hope you will stay with us and get to see how great all are on this and other forums as well

Often with any chronic illness anxiety/ panic and depression will or may set in..........

Be well ............

I dont have the "fog" all the time either

...................LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
    We Have Anxiety / Panic ..Anxiety / Panic DO NOT have US 
 You have To Have Some Laughter as Well as Those Tears IMHO         
 
    
 
 
 
                    


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40569
   Posted 10/27/2008 7:18 PM (GMT -7)   
Hi Sandi,

I wanted to welcome you to healingwell and add that the vitamin D does help you to feel better. I had low levels too and now that I am taking it I feel a lot better. There is also a malic acid/magnesium supplement that you might want to look into. All these help you to feel better but don't interfere with your thinking.

I know it seems like you can't walk comfortably, but don't stop walking. You have to keep moving around or you will be stiff as a board. You wont be able to function if you don't keep moving.

I also know that things seem negative, but if you think more positively you will be a lot more happy. Your body might ache all over, but atleast you still have all of your working parts. I had been complaining about my legs aching one day then I saw a lady with no legs. She was in a scooter type chair. And was trying to navigate in the nasty weather. I sure did feel differently after that. I am happy that I have legs to ache. So there are a lot of positives in your life, you just have to be able to recognise them.

I hope that we can help you to feel better. I do suggest the reading. There is a lot of information on the different threads. We also try to have a little fun with daily checkins. In fact we all try to maintain a sense of humor to keep going. It helps.

Have a wonderful evening,

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 10/28/2008 9:42 AM (GMT -7)   
Hi Sandi and welcome. I'm sorry your feeling so bad and having so many problems but I'm glad you found this forum. The knowledge on this forum is amazing and you will learn so much about fibro and all that comes with it. I really think that is what you need right now is getting to know everything there is about fibro.
 
You have already been given some good advice on what may help. We are all different and what may help one may not help someone else, it's all trial and error with fibro. It takes time to get to know this DD and what works for you. Sorry but you won't have all the answers over night. You read and ask questions and we all share what we have found that works.
 
I feel like I have developed AD too with the fog. If I start a book and put it down for awhile I have to start from the beginning. I use to be a wiz at research papers and things and now wonder around the house not knowing what I was doing seconds before. I am much older than you at 58. We learn to cope with our problems and compensate. The fog is not always bad we have times when we feel like we are thinking clearly.
 
I hate taking meds too but I had to go on amitriptyline and xanax years ago for anxiety and panic attacks. I do think the amitriptyline helps with the pain for me. Xanax helps me sleep. Some of us sleep too much and some do not sleep enough, I'm the later.
 
I can not take nsaids so I take 4000 mg of tylenol a day. I take tramadol for back up. I also use a TENS unit to interrupt the pain to the brain when it gets really bad. Moist heat of any kind. Lower the stress and worry as much as you can in your life, I know that is hard to do. Positive thinking helps too. Looking at the positive and not focusing on the negative.
 
We are here for you and will help you to understand all this.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin

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