Advice someone? Anyone?...begging here.

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Mrs.T
Regular Member


Date Joined May 2009
Total Posts : 58
   Posted 8/21/2009 4:25 PM (GMT -7)   
I have been so exhausted lately. It's all I can do to get up my stairs, and when I do I am out of breath. How do you guys and gals combat this? I can't do the caffeine, it gives my muscles cramps. I do take vitamin D and drink a ton of orange juice, but apparently it isn't enough. I am at my wits end. I have 2 young boys, and I rarely can take them outside to play even. I feel like a terrible mother. I want to start taking walks, but I am honestly afraid I won't make it back! I have to use a cane to help me out sometimes, and I hate it, but I really need something to lean on sometimes. Also I have a nearly crippling pain in my left ribcage area, and I don't know what the heck it is, and it makes things worse! I have to go school supply shopping tonight, and I am dreading it to the extreme. The mere thought of walking around walmart makes me cringe, because for one I will most likely hurt after and two, I'll be panting and struggling the whole time. I don't want to use a wheel chair, but I just might have to, and I never have before. I'm not overweight at all, so I know that's not the issue. In fact, I have lost so much weight and continue to do so, despite not being able to exercise. I can barely do my stretches, let alone work out. My housework is falling to the wayside and it's darn depressing. I know I don't sleep enough at night, despite my ridiculous fatigue, and I have no idea why that is either. I am getting to my wit's end here because it seems to be getting worse, despite the fact that I am out of my 6 month long flare (praise God!). I have been in my PJ's all day because my clothes are upstairs shakehead.
if anyone has any suggestions, or perhaps some meds that I could mention to my doctor I would be the most grateful little fibromite you ever met. This is beginning to impact every aspect of my life. School is starting for my kids and I really want to be able to participate in some of their parties and stuff, but I am afraid to sign up (they have you do it at the start of the year here), because who knows if I will be able to or not?
Thank you in advance,
Sharla
Mother to two wonderful boys and wife to the best husband ever.

~Fibro, Diabetes, PCOS~


** "Don't tell me to suck it up, do I look like a vacuum cleaner?"


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 952
   Posted 8/21/2009 4:47 PM (GMT -7)   
I know this may sound crazy, but since doing my new herbal regeime I've been sleeping much better. I'm going to look
into the melatonin for the times I don't sleep good (rare now). I've been on it for 4 months now and feel great. I'm finally
getting into the REM mode at night. One time during a "flare" I counted over 40 times I woke up in one night. I asked
my dr about this last year and he said because of the arthritis/fibro my body was going into pain spasms during sleep
which made it so it was unable to go into REM. All he did was give me another round of drugs. Now I'm getting rest,
better energy and not so miserably *****y all the time. If it helps, see how many times you wake up in a night. I know
hot showers help to get into the initial sleep.

cydful
New Member


Date Joined Jul 2009
Total Posts : 17
   Posted 8/21/2009 6:14 PM (GMT -7)   
I can pretty much relate to everything you are feeling, I have 4 children, 2 just started their school year. Right now I am hurting so bad it's hard to hold my head up, or use my arm-let alone the housework that is needed very very badly. It does get depressing. I went to the rheumatoligist for the first time yesterday. Right now I am on Sevella & Lyrica for the fibro, ambien CR for sleep-my GP doc prescribed those; the rheumy wants my GP to increase the Lyrica to 200mg BID, add zanaflex, add B6B1 vitamin, and some other pain med I can't read very well, lol....I don't know anything about the other meds he wants me to take, but I'm hoping it works! Like you I feel like a bad mother, my 3 year old wants me to carry her all the time-and it hurts so bad....not to mention the constant getting up & down getting her the things she needs or is getting into; I feel horrible for my 12 & 14 yr olds that at times I hurt too bad to make dinner and they have to warm something up in the microwave, or that I can't get out and play ball with them. It's tough, on all of us. I try to make up for it when I'm having a good day, which then back fires on me because I find myself hurting for several days afterwards by doing too much- it seems like a no win situation. I really don't have any answers, but just wanted you to know that you are not alone, I understand.
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Post Edited By Moderator (Jeannie143) : 8/22/2009 10:23:32 AM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/21/2009 7:35 PM (GMT -7)   
Are you pacing, taking pre-emptive rests, things like that?

Please let us know if you don't know what I'm talking about, and we can tell you more.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Mrs.T
Regular Member


Date Joined May 2009
Total Posts : 58
   Posted 8/21/2009 10:51 PM (GMT -7)   
Ivy6,
I'm not sure I know what you're talking about. I pace all the time though, because it helps the pain on occasion. I do have to rest frequently though, so that may not be what you mean. As for preemptive rests, I don't really have a lot of time for resting. If my kids nap, I try to nap with them, but that's rare. If they are napping then that means I have about an hour of uninterrupted time that I can get a little (very little, sadly) housework done.
Is this what you mean? Sorry I didn't understand you better.

thanks to everyone for replying and giving support :)
Mother to two wonderful boys and wife to the best husband ever.

~Fibro, Diabetes, PCOS~


** "Don't tell me to suck it up, do I look like a vacuum cleaner?"


bs2455
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/21/2009 11:26 PM (GMT -7)   

I have to say that i know exactly how you feel.  I am currently on cymbalta for pain management, flexeril for muscle spasms, elavil to help me sleep, calcium pills, zantac for my stomach, and b12 for energy.

I know it sounds like alot and I would love to get off some, but I have tried in the past and it has sent me into major flare-ups that refuse to go away.  I really like the b12. I have noticed a big difference since taking them, I also got my mom to start taking them for the same reason, and she has gotten alot of her energy back. The best thing is, it won't hurt you, but help. Good luck! I hope this helped!

BS


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 8/22/2009 6:51 AM (GMT -7)   
I'm so sorry you feel so bad. Last summer I had so much fatigue, I could not get motivated to do anything. Like you, I felt so guilty for the kids. I couldn't even push my dd on the swing for 5 minutes before I felt like I would collapse. Then I tried a malic acid/ magnesium combo that was a life saver for me. Sherrine is a big advocate of it. You can get the bottles fairly cheaply at Puritan's Pride, as they always have a BOGO going on. Start off slowly, b/c excess magnesium can give you diarrhea. I worked my way up to 4 tablets/ day, 2 with breakfast, 2 with dinner. Within a few weeks, I felt almost normal, and I could function. It was aroudn teh time I also started taking amitriptyline (Elavil I believe?) to help me sleep.

Good luck to you, it sounds like you have a lot going on.
possible fibro and trigeminal neuralgia
taking 50 mgs amitriptyline, 500 mgs 2/day Naproxen


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/22/2009 7:17 AM (GMT -7)   
Mrs T.

I am sorry you are suffering.Being a mom of two young boys is exhausting in itself.
Are you seeing a doctor soon? You mentioned you are losing lots of weight without
exercising. Have you been trying to lose weight? If not, that is a concern.

Sometimes sleeping can be difficult. At times I will take Flexeril at bed time, it makes
me sleepy. I can't really take it during the day though unless I know I won't be driving.

You could ask your doctor to check for anemia. When my blood count is down I am
really fatigued. Hope your energy level improves soon and that you are feeling better.

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 8/22/2009 9:20 AM (GMT -7)   
The less you do the less you will be able to do. You have got to keep going and rest frequently between spurts of action. I only shop at small stores like ALDI for groceries where I"m in and out in 20 minutes. For bigger stuff or clothes I only shop in stores that have Amigo style carts for the customers. Shopping is almost fun again when I'm tooling around in my 'go cart'.

Plan your dinners in advance. Do some research and get out the crock pot. Clean, cut and pare your vegetables sitting at a table. Read your grocery ads and plan your shopping around them. Ask your children to help out. Even if they can't reach the cupboards they can take the dishes out of the dishwasher and stack them on the counter so you don't have to do the bending. Have the little ones carry their laundry to the washer. My kids learned to do laundry at age 8. I figure if they can play a video game or navigate the internet at that age they can run a washing machine. Type up simple directions and post them over the washer and dryer. Have a folding party and teach them how to fold things nicely. You'd be surprised how proud of themselves they become when they do their own laundry.

Try to get in a really hot bath about twice a week. Light several candles in the bathroom when showering or bathing. They will warm the room so you don't chill when you are drying off. When the weather turns colder start wearing layers especially fleece. If your muscles get cold they are harder to move and hurt more. Use more pillows in your bed. Put one behind your back when you lie on your side. Put another between your knees and one under your arm. Get a hot water bottle. When you go to bed put it where you hurt most. The best thing about a hot water bottle is that they get cooler and don't burn you like a heating pad can. In the cooler weather one of our members used to put an electric blanket in the recliner and lay in it, wrapping herself up like a burrito. She got excellent relief from this and liked it better than trying to get in and out of the tub.

Hang in there, girlfriend. You can do this. Just gotta KOKO! (Keep on keepin' on!)
~ 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


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 8/22/2009 9:24 AM (GMT -7)   

You mentioned that you drink a lot of orange juice.  That has sooo much sugar in it and it could be raising your blood sugar high and making you more tired.  I see you are diabetic so you shouldn't be drinking that!   I know I can't drink orange juice or eat an orange.  My sugars go through the roof and then I'm soooo tired.  Also, watch how many carbohydrates you are eating.  Those turn into sugar and your blood sugar rises and will make you extremely tired.

I heard a doctor this morning say that drinking two glasses of beet juice a day significantly raises energy levels!  It might be worth a try!

The pain in the rib cage could be costochondritis.  I have that and use ibuprofen with food for it and that does help.  I get this more in the summer because I flare in the summer.  Here is a link all about it.  See if it sounds like you.

http://www.geocities.com/lynndebeal/CostoPain.html

Have you given the malic acid/magnesium supplements a try?  They have helped me with pain and fatigue, too.  Just a thought.

I hope you will start feeling better, but, lay off the orange juice!  That's very bad for you, not only for fatigue but for your diabetes.  An 8 oz. glass of orange juice generally has 22 grams of sugar in it...the same as a two tablespoon serving of Hershey's Syrup! 

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) : 8/22/2009 11:30:55 AM (GMT-6)


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 8/22/2009 1:37 PM (GMT -7)   
A nice way to combat fatigue is to spend some time in the pool. If you cannot swim there are shallow water classes where you can work at your level. Our bodies are designed to move and when we exercise, we have a lot more energy.

Start with however long you feel comfortable. You can sign your children up for lessons and?or let them swim at the same time.

I reared three children the scooter in the store. THe trip will be so much easier that way.

Take care,

Donnaeilren with this syndrome and I understand what you are going through. I did not know anything about fibromyalgia or chronic fatigue at the time. I wish I had known. But then, doctors were not diagnosing it then.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/22/2009 3:50 PM (GMT -7)   
No, pacing isn't walking :-). It's a method for dealing with illnesses like chronic fatigue and fibromyalgia. Too often, we try to push through the pain and fatigue, telling ourselves that we need to be "productive", and then we fall into a heap with even worse fatigue, pain and exhaustion. It sounds to me as if this is what you're experiencing.

Pacing involves examining yourself and determining what you *are* able to do each day without hurting yourself. This becomes your "envelope" and you try not to push yourself beyond that, because you know that you will suffer for it. You *can* increase your envelope through training (just like an athlete), but you need to do this slowly and carefully - in other words, don't do twice as much as you normally would today, just because you're feeling a bit better, because you *will* pay for it tomorrow.

Alternate between hard activities and easier ones: for instance, maybe only vacuum one floor, and then sit down and make a telephone call, and then vacuum another floor.

Break any big jobs into smaller, easier tasks. I often only wash a few dishes at a time, and then sit down and rest. I don't kill myself doing a whole day of gardening: instead, I've worked out how long I can spend out there without doing myself damage (for me, it's about 10-15 minutes), and try to do that much each day, and then stop. I don't iron a whole basket of laundry at once; instead, I just do a few things and then stop.

Make sure you have lots of little rests throughout the day. It may only need to be for two minutes, but lie down, in silence, with your eyes closed, as often as you can. With experimentation, you will work out for yourself how much rest you need. Yes, I *know* this is difficult with littlies in the house, but I do think that even 1-2 minute rests might be possible, and I think they may make a lot of difference to your energy levels. I find that it also makes a huge difference to my pain: I stop and lie on the floor the minute I feel a nasty twinge, and do relaxation exercises for a couple of minutes, and quite often the pain disappears after that.

Links for you to read:

http://www.recoveryfromcfs.org/]http://www.recoveryfromcfs.org/

http://www.cfidsselfhelp.org/library/pacing-an-alternative-push-and-crash

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Post Edited (ivy6) : 8/22/2009 4:55:00 PM (GMT-6)


Mrs.T
Regular Member


Date Joined May 2009
Total Posts : 58
   Posted 8/22/2009 6:06 PM (GMT -7)   
Thank you all so much for the tips and vitamin suggestions! I will absolutely look into them. As for the orange juice and my diabetes, well, since I have lost so much weight recently, it doesn't even affect my sugar levels. I have had to cut my insulin by more than half, most days even 10 units of N will get my sugars right on target. It's funny, I used to pray for my diabetes to go away, and now it practically has, but at what cost? I know diabetes is probably more dangerous in the long run, but at least I knew how to control it, you know? I do have a prescription for elavil, but I have seen no results from it, sleep or otherwise. It's only 25 mgs though, so maybe I should ask for an increase? The neuronton says it will make me sleepy, but I got zip there too. It's like I am immune to sleep! I don't "exercise" exactly, but I also would not be considered inactive, or at least I don't think so...but who knows.
Jeannie, thank you for the advice about planning meals, I do use a crock pot often. I also have a dishwasher that the kids help me load. Right now they are both too young to help with the laundry. They are only 5 and 6, and I am not too sure they could haul their stuff in and out of the basement. Luckily though my husband helps with this, I am FORBIDDEN from doing laundry, since I have fallen down those stairs already.
you guys are so all so great and caring, and it means the world to me. I am missing my Mom so much right now. She was my go to for advice, since she has went through all of this and more...but she's gone now, and you know, that may be part of all this. I do get depressed about her passing and it is still so fresh. When I do sleep I dream about her, and in the dreams it was always a mistake, and she really didn't die. If it's not that then it's about me murdering her because I let them take the tube out..so maybe in my subconscious I don't want to sleep?
Anyhow, thank you all so much. I will try to pace myself and get those vitamins and ease up on the OJ etc.
Mother to two wonderful boys and wife to the best husband ever.

~Fibro, Diabetes, PCOS~


** "Don't tell me to suck it up, do I look like a vacuum cleaner?"


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 8/22/2009 8:41 PM (GMT -7)   
It would be great if you could get off insulin.  That might be possible if you stopped all the sugar.  I do not take insulin.  I take glyburide pills and have it under control but I can't have that much sugar in my system.  If I did, I'd have to go on insulin to control it. 
 
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

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