Skip to content
My WebMD Sign In, Sign Up
New member
avatar
smithfamily4 posted:
Hello, my name is Kathryn. I am 45 years old, married for 26 years, mother to 3 amazing adult children. I was diagnosed with fibromyalgia in 1994. I was in my last year of college when it became unbearable and I was forced to leave school. I did end up completing my education but it was delayed for a bit. In 2002 I was also diagnosed with lupus. I still was unwilling to accept the diagnosis. I was so angry. I had spent so many years denying that there was anything wrong and it just seemed that it all just kept getting worse. I didn't want my husband or my children to see me as a burden so I refused to see the doctors for awhile and I refused all medications. Until in 2008, I woke up in the middle of the night and found that I was paralyzed from my waist down. My husband took me into the ER and I was diagnosed with Acute Transverse Myelitis. It was explained to us that lupus had attacked my spinal cord and that whatever progressed I made in the first year would be as good as it ever would get. My doctors did not think that I would walk again as it had been such a quick and thorough attack. I spent the most part of 6 months in a wheelchair and going to physical therapy after I was released from the hospital but I did walk again, However that attack was just the start of a downhill progression. I now have cognitive memory dysfunction and heart involvement. I lost my job in 2011 after it became impossible to make it through the day due to pain and fatigue. I am currently trying to get disability but it has been one rejection after another. I have more bad days than good. I get up each morning and if I manage to get dressed, brush my teeth, and let my dogs out than I am ready for a nap. I need another nap about 4 hours later and then I am in my bed again by 8 pm. I have a hard time finding clothes that don't add to my pain. I have discovered that bamboo fabric is the most comfortable fabric against my skin. My husband or my kids now brush my hair and help me to get dressed most days and I very seldom cook because I cannot function enough to keep track of a recipe. I do not exercise anymore because I do not want to deal with one hour of exercise only to spend the next 3 days just suffering miserably from the pain. I had been a fitness instructor from 2004 to 2007, prior to that I was a high school English teacher and a girl's cheerleading coach so it isn't that I don't know the benefits but for me the benefits just do not outweigh the cons. My husband put a pool in the backyard and he takes me swimming every day in the summer months just enough to move my joints around .I am also limited to driving no more than 10 miles from my front door which is enough to allow me to go to the grocery (1.3 miles) and to my rheumatologist and neurologist (6 miles) even then one of the kids usually has to go with me so they can take over the driving if I get too tired. I take Lyrica 300 mg daily, Plaquenil 50 mg daily, Namenda 50 mg daily, Aricept 20 mg daily, Trazadone 50mg daily, Vitamin D3 2000 iu daily. I have Vicodin 7.5 mg as needed but I try so hard to avoid it because I am concerned that it is a narcotic and can be addictive, I don't want to become an addict on top of everything else. ntil this past 2 years I didn't think I was depressed but now I do and I just wish I didn't feel so incapable. This pain and fatigue are killing me. With all the medications and therapies available has anyone found something that helps with fatigue?
Reply
 
avatar
missist responded:
Hi Kathryn, Welcome! boy that's a lot and you asked the million dollar question--what helps fatigue? We all wish we knew I'm sure. I think for most of us it is pacing and more pacing. I think I am pretty well functioning --considering I don't have a job outside the house anymore. I feel pretty good much of the day but am very tired in the late afternoon and evening--so don't do much then. Surf the net, think, read short things..

I felt some energy when I added B1 to my daily meds--currently I take a mix of B vitamins, D and RX meds.

For exercise--you might like this--I stretch in my hot tub. There are no hot tubs in facilities within driving distance from my home so Hubby got an old one and got it running for me. When it was warmer I kept it a little cooler but now that it is fall I like it fairly hot. My biggest stretching problem is my legs-- muscles are like steel they just do not relax but I can climb stairs much better when I do those stretches. I love a free on public tv exercise program Classical Stretch--but I can't do more than maybe 5 minutes at a time. An hour of exercise no way-- I wouldn't try that as I know I do pay for being too active.

I think its probably easier to treat pain than fatigue--but if you get pain down you will have a little more energy--unless the pain reliever makes you even more tired.

Well anyhow-- welcome, there are some very knowledgeable folks here hopefully you will enjoy the support and get some new tools to try.
I'll add you to my prayer list.
Mary
 
avatar
Anon_10089 responded:
Hello and sorry for what you've been through! Of course, we here don't know much about issues other than the FM but this is a good place for support.

First, I noticed you said you don't want to deal with "one hour of exercise". Don't do an hour. Do 5 minutes if you can. If you can do 5 minutes a few times a day, that would be great. If you can do 5 minutes once a day, that would be great! Maybe even 5 minutes is too much right now.

I attended a FM class once and they said that we may have to work up to mere minutes by just walking through our houses. If a few minutes is too much, go back down. Build up slowly. I know you used to be a fitness instructor so doing just 5 minutes must really mess with your head. Well, that's probably the biggest struggle with FM: the mental game--letting go of guilt and who you used to be.

My next comments are purely my opinion and I am in no way trying to convince you to use medication you are not comfortable with. I used to also resist using vicodin. But then I realized that my quality of life was nil. Research shows that people who use it for chronic pain usually do not develop addiction issues. And there is a difference between physical dependence and addiction. Physical dependence happens with many medications and is just the body being used to a chemical and will react badly when that chemical is stopped. Addiction is more of a behavioral issue. If you were in less pain, you may be less fatigued and less depressed. Again, purely my opinion without knowing all the facts. It might be something to talk to your family/doctor about.

I know Lyrica and trazadone can also be pretty sedating so although they are probably helping with your pain, they may be contributing to the daytime fatigue. I've also read some people's comments here about Lyrica affecting their emotions so maybe take a look back when you started it and how you've felt since then.

I've taken wellbutrin (an antidepressant) that has worked well for me for depression and energy. Anti-depressants can help with pain, energy, and fogginess so that could be a possibility for you too.

I hope you find some solutions! This is a great place for information and support!
 
avatar
bette_kaffitz responded:
Hi,

Mary is right about 5 minutes being better than nothing. For many of us, it's even better than an hour. Try 1 minute intervals several times a day. Then try 2 minutes. The 3. If you take 5 days to work up to 5 minutes, where would you be if you spent those 5 days doing no exercise? You'd be 5 days older, but not much better.

I'm 70, but my fibro began when I was 29 and in my second pregnancy. I brush my teeth, and then before I can climb into the shower, I have to walk to the bedroom and set out my clothes. If I climb right into the shower, my back will not allow me to finish the shower. I just cannot stand for more than a few minutes at a time. By breaking up each task into smaller bits, I manage. Of course it takes a lot longer than it did pre-fibro. But just as you learned--with great effort--to walk again, you can reclaim bits and pieces of your life. Just do it in fibro type baby steps.

It is SO discouraging to try to to something right for yourself and then have your body punish you for your effort. Through trial and error, you WILL discover how much you can do on a good day, and how much you cannot do on a bad day.

About those meds, the fentanyl patches let me work for several more years than I would have without them. Those years made the difference in my disability payments that meant we could keep our farm. I chose to go off these and other opiates when the fibrofog got to be an issue.

You are right to consider the fact that opioids are addictive. On the other hand, can you honestly imagine a day when you will be pain free and no longer need to take them? If not, then the idea of withdrawl is not an issue. And IF you do get to a point where you no longer need these meds, your doctor will put you on a step down program to make it as painless as possible. You won't be climbing the walls craving your next "fix."

Been there, done that.

Bette
 
avatar
meg_k replied to bette_kaffitz's response:
Oh my goodness, what a tough cookie you've had to be to get through all of this. You are so brave!

I am concerned you are sleeping so much, both from a medication sedation standpoint and also this could be a sign of depression. That's not a very good quality of life, to be sleeping it away. I know it may seem less painful than being awake, but it's concerning. I would definitely talk to your doctor about this. How can we *not* be depressed dealing with all this stuff?

The ladies here all have wonderful suggestions. Fatigue is a real killer and there's no easy solution. I would add to have your Vit D and B12 monitored closely. I have had some luck with a supplement called acetyl-l-carnitine. I also take thyroid medication which seems to help.

Another thought is for you to try acupuncture/Chinese medicine. I have found this very helpful, and my insurance does cover it, with a copay.

Best of luck...rest assured that there is hope and you don't always have to feel as badly as you do today.

Take care. Soft hugs.

Meg
 
avatar
franr responded:
Welcome Kathryn
So sorry you are going through so much .You are coping with so much at a young age of 45. Many of us have also been in denial about our diagnosis at sometime in our lives. It is possibly that some of the medication is causing your exhaustion. You didn't say how long you have been on medication. Sometimes the side effects wane after a few weeks. Check with your MD about side effects. Depression can also cause fatigue. Maybe speaking with a therapist will help Maybe alterative therapies can help. Massage and acupressure are good. Sometype of meditation or prayer can be helpful. Rest a sure there is always a helpful member here at this community who always willing to listen. Hugs...Fran R


.


Helpful Tips

Living Well with Fibromyalgia
Greetings! I have learned patience and a positive attitude is key to my pain management. I developed Fibromyalgia after a hysterectomy in ... More
Was this Helpful?
190 of 207 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.