new to fibro, question about flares and guilt.

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Amber Jo
New Member


Date Joined Feb 2007
Total Posts : 16
   Posted 2/10/2009 9:03 AM (GMT -7)   
I am newly diagnoses, and I have a question about fibro flare ups. It seems like about 2X a year I get a flare up that is really bad. But there are times of the year that I am just fine. Is this part of fibro? If so is there anything that can be done to prevent the flare up? Right now I am in the longest flare up I have ever had. It has been since this summer that the pain has been awful. Normally it just last a month or so. I have been trying to go for walks, but sometimes I can't even make it home without my son or husband to help me. My doc said exercise really helps, and normally it does. But this flare up is different. I feel like I am never going to get out of this flare up. And I feel like my family is sick of me feeling bad. Normally they deal with the few weeks well, but this has been a really long time. I sit on the couch, try to get anything done that I can, but get so weak that I have to sit down, or lay down. I feel like they think I am using fibro as an excuse. And I am pushing myself as much as I can to do simple things like dishes and laundry. I honestly feel useless at this point. I just sit on the couch, suck on candy to keep my stomach from throwing up and do very little to help everyone with simple chores. I wish I knew how much longer it will be till I feel better again.
 
I also forget things, and repeat things over and over. It is like my brain is stuck in a loop. I forget that I asked my family to do dishes, and end up asking them if they will do them over and over. I think they think I am nagging them all day while I sit on my butt and do nothing. I think I annoy them a lot. I really don't know what I can do. My husband is retired, so he is home all day, my son is 18 and homeschooled and he is home all day. I feel like if I could just get the day alone it would be better on everyone. Then I could relax without guilt, and my stress levels would be lower. Then I wouldn't feel so pressured all day to get housework done. Does this make sense to anyone?
 
I need advice on how to overcome the pain and get things done without collapsing and disappointing my family. I want to be functional, and after six month of sitting around, I feel like I have to make up for it and get over the pain and make up for sitting around. Sorry so long, but I feel like I am stuck in a cycle that I can't break.
 
Also, does anyone have hair loss. I have lost almost all of my hair. I have to wear bandana's on my head it is so bad. It was at my waist in October, now I only have a few inches left.
Fibro, Hemiplegic migraines, Seizures, Abnormal Heart rhythms, Sleep apnea..... Trilepital 1200mg, Keppra 1000mg, Ativan 3mg, Klonopin 3mg as needed, Oxycotin 20mg 2x daily, gabapentin 600mg, Altenenol 50mg.


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 2/10/2009 10:21 AM (GMT -7)   
Amber Jo,
I'm sorry that you are having such a hard time with your fibro. It can be discouraging, to say the least. In reading your post I noticed something... You say, "I think they think I'm nagging..." or "I think I annoy them a lot" or "I think..." I don't want to be hard on you but you are doing what my Irish Grandmother used to call "Borrowing Trouble". You may be making suppositions about how your family feels and they may not feel that way at all. Time for a family Pow Wow. Brew a pot of coffee or get out some sodas and sit down to talk.

They need to know that you feel awful and also that you are feeling guilty about what you can and cannot do. They need to understand your pain level. They may also need to know that you need increased rest at this time. Only if you speak candidly can you get them to understand what they have probably figured out already. You are going to feel this way until the flare passes so feeling guilty will only add to your pain. You have to let that go and accept it. You also need to let your hubby and son take over the daily chores without your direction. They are grown men and totally capable of caring for a home, buying groceries, cooking and doing dishes. They are also bright enough to do these things without being asked. You may have to let go of the control of HOW these things are accomplished and let them do things their way... But right now the house and their comfort is secondary to your healing.

You appear to be on a lot of meds that may affect your ability to get up and get going so a talk with your Pharmacist is in order. He/she is the person who understands the meds you are on, even better than your doctor. Your pharmacist can let you know if any of the drugs you take may be affecting your hair loss, pain levels, energy levels and how they are all interacting. Then you may have him/her make some recommendations to your doctor. Most docs are more than happy to get some drug pointers from the people who understand it better than themselves.

The only thing that I take to help me with my energy levels and muscle pain is Malic Acid. I started taking this about four years ago and have since been able to convince many of the peeps here to try it. Sherrine has a great post about it so read here -> Malic Acid and learn.

Hope this helps. Just remember, you gotta take care of you, because if you don't, who will?
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 2/10/2009 10:32 AM (GMT -7)   
Welcome Amber Jo,
Have you had your thyroid checked? Low thyroid can cause fatigue, muscle pain and hair loss, in addition to other symptoms. Also a low level of vitamin D can cause the same symptoms. I believe there are other reasons for the symptoms too. I'm not saying you don't have fibro, but you could have some other issues that could be taken care of and might help to alleviate some of the symptoms.

I wish you well,
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


julieleaps
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 2/10/2009 10:38 AM (GMT -7)   
I pray you have had plenty of medical tests to rule out any other illnesses. I've never heard of hair loss with fibro, but then, I haven't researched all the drugs you are taking, so perhaps that's a side effect?

Jeannie's advice is sound: talk to your guys. Do some research on your medications. Take care of yourself. No one else can do it for you.

Take care,
Julie
Still learning how to manage my Fibromylagia, and all the lovely gifts it brings.   
I had severe spinal stenosis, had fusion done on C5-7, and my life has changed. 
 
 


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 2/10/2009 10:41 AM (GMT -7)   
Hi Amber Jo and welcome to the family. I felt like I was in a flare all summer, we had a very wet and weird summer here. I was feeling pretty good when it was cold but then Fri the temp got into the 50s, Sat the mid 60s, Sun. in the 30s, yesterday in the 60s and in the 60s today with storms tonight. I live in central Illinois and this is very high temps for this time of year and I have been hurting a lot more even though I have enjoyed the weather and getting outside. There is snow in the forecast for Sat which is just crazy. Weather changes like this plays havoc with our fibro bodies and I'm sure the closer these storms gets to us tonight the worse I'm going to be hurting. So you might want to pay attention to the weather and seasons that you have more pain and don't feel good.
 
Stress also has an affect on our bodies so I do a lot of self analyzing to see what is causing me stress when I'm feeling worse.
 
There really isn't any rhyme not reason sometimes to why we feel so bad so we have to adjust our lives to how we feel. Don't feel guilty for having fibro, none of us asked for this DD. Educate your husband and son on fibro not that they are ever going to really get it cause you can't unless you have it but they may be more understanding about the way you feel.
 
I have not felt normal for many years, fibro is always there to some degree so don't expect to feel like you did before fibro or you will disappoint yourself everyday. We learn to work with it to live as normal as we can now.
 
The fibrofog gets to all of us but we learn to live with it too and even laugh about some of the crazy things our minds do to us.
 
The hair loss I would get help for. My hair is thinner than it use to be but I don't have any bald patches.
 
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


Amber Jo
New Member


Date Joined Feb 2007
Total Posts : 16
   Posted 2/10/2009 11:15 AM (GMT -7)   
I have had test out the gazoo! I have a great neurologist, a rhuematologist, a cardiologist, and primary care. They say the hair loss is stress. My thyroid was low on my last set of test, so they are running a full pannel on it. I have spent 4 weeks total this year on 4 different occasions hospitalized, and have great doctors. My diagnosis has been confirmed by both my neurologist and rheumatologist, so I am pretty sure they are right. I also have other disorders, such as seizures, so that is why I am on so much meds. I have had a lot of seizures, so in order to keep my drivers license they have to be in control. All my doctors work together, so my meds are watched carefully. I am actually hoping my hair loss is related to my thyroid so it can be fixed. But I can assure you that I am not self diagnosed, and that all my issues are monitored my my doctors. I was just very happy that I didn't have lupus, or MS. Even though my docs still think they are possible, I have no official diagnosis on those. I refuse a spinal tap, so they can't confirm or deny the MS. They tried two spinal taps, both put me in seizures, so I could have been paralysed. That is why I refuse a third. I have MRI's twice a year on my brain, and have a monthly EEG, and a yearly EKG, but in the past year I have had 8 EKG's and about 20 EEG's. So on top of the fibro, there are other issues. Trust me, I am at one of my doctors every week, which is hard because they are 60 miles away, and a lot of the time that drive can cause seizures so I can't drive myself. The hardest part of all of this is the pain. That is why I guess I am so low right now. I can handle everything else with a smile on my face, but this pain, this flare up is almost unbearable. I thank God when my hemiplegic seizures kick in and I am paraized on half my body, then I only have half the pain to deal with. So, is it true that fibro does have flare ups? Or can it get to a point that it just keeps you in pain forever? I am sorry to sound so down, but it has been a really rough few months, and I feel like I can't just smile about it anymore.
 
And Jeanie, you are right, I talked to my hubby, and he understands. I am just being down on myself he said. I got up to do laundry, he stoped me and said I need to take care of myself, not everything else. So thank you for your advice. I do have a family that understands, I think I just need to come to terms with letting myself rest and heal.

And thank you to everyone else. I don't feel so alone here. It is nice to talk to people who understand and are going though the same thing!!!!!!!!


Fibro, Hemiplegic migraines, Seizures, Abnormal Heart rhythms, Sleep apnea..... Trilepital 1200mg, Keppra 1000mg, Ativan 3mg, Klonopin 3mg as needed, Oxycotin 20mg 2x daily, gabapentin 600mg, Altenenol 50mg.

Post Edited (Amber Jo) : 2/10/2009 11:21:30 AM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 2/10/2009 11:37 AM (GMT -7)   
Amber, you can have flares and then have them leave...for no reason at all.  I started a really bad flare last July and it lasted until January 3rd.  I woke up and didn't have nearly the pain I had been having.  I can't explain why this happens but it happens to me nearly every year.  I think weather plays into this.  I live in Florida and in July the humidity rises and the summer storms come every afternoon.  But, this all stops around October or November, but the pain lasts generally through Christmas.  Then I'm better again for several months.  Perhaps the stress during the Christmas season plays into this too, but I don't feel stressed.  Who knows?
 
But, I think this will get better again for you.  At least that's what's happened for me.  But, I'm never without some pain.  I can just manage it much better when I'm not in a flare.
 
By the way, hair loss can be a symptom of fibromyalgia but I'd still have my prescriptions checked out by the pharmacist like Jeannie suggested.  I was very sick 20 years ago and was on a lot of medication and my hair was falling out badly.  I'd wash my hair and my hands would be covered with the hair that fell out.  Once I was off the meds, that stopped and some of the hair grew back.  From what you described, I would guess that it's the meds, since I've never heard of a fibromite losing that much hair.
 
You are going through some tough times now so try not to be so hard on yourself.  You shouldn't feel guilty.  You didn't ask for these health problems and you didn't do anything to get them either.  It just happened and now you need to make some changes that will help you to live your life and enjoy it.  Do pace yourself.  Try not to do a lot in one day.  That usually causes more pain and fatigue.  I gave some tips as to what I do about mealtime, too.  So did other members on the thread called, "In tears, am I unreasonable".  That may help you too.  Be sure to ask questions.  Someone here will probably have been though whatever is worrying you and you can get some help.  So, try to relax.  We are here to help all that we can.
 
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


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 2/10/2009 11:50 AM (GMT -7)   

Hi Amber...I go months were the pain is just back ground noise and then it hits out of nowhere.  I've been in a flare since October and I know it's miserable.  I also have had hair loss...my thyroid is fine.  I finally cut it really short thinking the thinning wouldn't show so much.  And as far as the forgetting things..I think I am the Queen of that symptom.  I drive through a blizzard to buy one item in a store and once inside, have no idea what I am in there for.  I have been looking for my purse since this morning...even in the garagae and basement.  It will show up..probably in some insane place like the freezer.

Feel better

huggies

donna

 


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 2/11/2009 7:17 AM (GMT -7)   

Hi Amber,

It seems all of the posts cover what I wanted to say.  So I'll just let you know that I really feel for you and your pain. 

I agree that you shouldn't be too hard on yourself.  The stress only makes fibro worse (lol, I'm good at telling other people that but I'm not so good at telling MYSELF that)

Please go slow.. take care and know that we all support you!!

Warm hugs,


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel. 
Meds = Elavil, Tramadol, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Willie-Will
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 2/11/2009 9:38 AM (GMT -7)   

Hi Amber,

Iam also new to fibro and can assure you that memory loss is a factor. It also frustrates me because I've always been on top of everything. Even as I'm writing you, I have to stop and look at the keys. I have a form of fibro call Costochondritis which affects my chest, ribs and back. I sometimes feel like I'm having a heart attack because it comes out of nowhere. My cardiologist says my heart is fine.I don't know what FLARE means. If it means irritable pain then yes i have that also. I try to perform my every day life and ignore what we have but sometimes dwell on it. My mind feels like I'm in a cloud or dream. I just turned 40(male) I don't know if females have different symptoms...Well I guess i just needed to talk (write) to someone. Well i hope me telling you my problems will help you see that your not alone....Take care of yourself. 


Willie-Will


SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 2/11/2009 11:47 AM (GMT -7)   
Hi Amber Jo (and Willie-Will, too! I'm sorry, I can't remember if I've said Hi to you yet or not),

First of all-Welcome to the family! This truly is a wonderful place and although I am very sorry that you are struggling with fibro, too, I am glad you found us!

You have been given some wonderful tips and advice, and I don't have much to add there, but I did want to let you know that I DO understand how you're feeling! I agree that you need to be gentle with yourself. Please take it slow and only do what you feel physically up to. (But do keep moving whenever you can since being too sedentary can make things worse! On my bad days, I just get up every hour or so and do some light stretching and walk the loop around my house. (My house has a circular design so all the rooms connect)..Anyway..I also can relate to feeling like you are not doing enough-I went through this when I first started having symptoms, and still feel it creep up on me now and then, but as long as you are open and honest with your family about how you are feeling, I am sure they will understand and help in any way they can. I am thinking of you and hoping you are feeling a little better.

Oh, also Willie-Will. "Flare" just means that your fibro symptoms are acting up really bad. For instance, I normally (on a "good" day) just feel generally achy and not 100% but then sometimes I will have days (weeks..months) when everything hurts so bad-my joints will ache, my muscles will burn, my tender spots will be especially sore, I feel tired and worn out and almost like I have the flu. For me, things like overdoing it on cleaning or shopping or exercise can send me into a flare. So can high anxiety and stress.Sugar and caffeine make me flare, too, and so I've had to cut both out of my diet. "Extreme" weather tends to bring it on, too. (either super hot or super cold) Sometimes, though, flares just seem to come out of nowhere with no rhyme or reason. Fibro can definitely be unpredictable!

Hope that helps a little!
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck

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