How to cope with Chronic Fatigue Syndrome and Fibromyalgia



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CFS Fibromyalgia

And yet, another rough day in the life of Tawra with CFS.

 

You can read Part 1 in our series About Chronic Fatigue Syndrome and Fibromyalgia.

And Part 2  on Getting Diagnosed if you have Chronic Fatigue Syndrome and Fibromyalgia

 

How We Live with Chronic Fatigue Syndrome and Fibromyalgia

Things that make my Fibromyalgia  worse:

Lack of Sleep
Stress
Too much exercise like climbing the stairs in our old bi-level house. (BIG MISTAKE!!!)

 

Things that seem to help Fibromyalgia

Taking a regular Alka-Seltzer, not the ones for cold.
Sleep
Air Bed may help. It did for me for a while but now I’m sleeping on my $20 garage sale couch because it’s easier on my muscles.
Pain medications (over the counter or prescription)
Stretching
Reducing stress (Ok, I know MUCH easier said than done but do what you can.)
Massage (I am lucky that my husband has learned how to do it for me so I don’t have to pay $80 a week to go once a week!)
Neuromuscular therapy works best for me when I have someone else do it.
Hot Baths (I have to take one almost nightly to ease the pain enough for me to sleep.)
Ben Gay Cream
Heating Pads
Resting, just sitting and reading or watching TV.

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Things that help my Chronic Fatigue Syndrome

Taking regular Alka- Seltzer, not cold

Taking NADH – This is a supplement sold though http://www.immunesupport.com . This is the only thing that I have found helps me. It did not help my mom or brother at all. It did give me more energy and made me feel a little better. It is fairly expensive ($40 a month) but worth it if it works. If it doesn’t work after a month or so, stop taking it, it’s probably not going to work for you. It DID NOT cure me. It only made it so that I have a little more energy and my Chronic Fatigue Syndrome wasn’t quite so bad.

Cutting out gluten. This helped me but not mom or my brother. You might check for food allergies as they can make symptoms worse.

Cutting all social activities (I keep it very limited. I have one friend and I see her for a few hours every 2-3 months)

Limiting phone calls

Reducing Stress

Getting Sleep (With 4 kid that’s the same as impossible, even with my husband getting up with them at night.)

Cool, dry climate – I felt much better in Colorado and Idaho than I did/do in Texas and Kansas. Some people report also feeling better in places like Arizona and Nevada.

Running the Air Conditioner- Removing the humidity from the air helps a lot.

Eating on Time – I get very sick if I don’t eat on a regular basis. I really go downhill fast. My husband can usually tell and forces me to eat something, even if I’m not hungry. It helps a lot to eat every two or three hours.

I have recently cut out most of the sugar. It has helped a lot, especially with brain fog and low energy. It was NOT easy at all to do, but I felt it was something I had to do. I am still working on not back sliding.

Wearing all cotton clothes – I feel like I’m going to "crawl out of my skin" if I don’t wear cotton. I don’t know why but I think it’s because I get hot in anything else.

Bee Pollen, Vitamins, Anti-depressants, Fish Oil, etc. have not helped me one bit.  The bee pollen even made mom worse!

These are things that seem to help so far.

First, you have to realize that you are sick. Once I stopped fighting being sick, started using my energy on other things and worked with it instead of against it I started doing much better! I’m not healed but I went from being flat in bed to at least being able to do the dishes during TV commercials.

I cut out almost all social activity. I am an introvert (I get my energy by being alone) not an extrovert (like my husband, a person who gets energy from being around people) so social things really make me sick. If you like being around people and it helps you feel better then do more social things.

I stopped gardening (my favorite thing to do) when I moved to Kansas. It just makes me too sick to work in the heat. Now I am doing small amounts of gardening as I can, mostly in the spring and fall.

My kids can do one outside the house activity at time and that’s it. Swimming lessons, karate, music– We allow only one.

I often have cable TV. Now I don’t normally advocate cable if you can’t afford it BUT in this case I think it really helps. When you are chronically ill, it really helps to take your mind off the pain. Sometimes you get so overwhelmed that you need a break and this helps. I don’t watch things like soap operas or daytime talk shows. I watch HGTV, Discovery Channel and other things that keep my brain focused on something productive. I try to be careful, though. I really enjoy doing home improvement stuff so it can get discouraging if I watch too much and can’t physically do it. Don’t watch junk. You don’t need to be filling your mind watching scandalous stories about what other people (who aren’t real anyway) are doing.

My husband does a lot of the hard things like scrubbing the tub and shower, and vacuuming.

I clean in spurts
. I do something for a few minutes, then quit and do something else. My house is never spotless but it is mostly picked up and neat.

My kids take a nap whether they are tired or not. They play in their room quietly for at least 1 1/2 hours after lunch. They also go to bed at 7:00 p.m. I really need the break and, by that time of night, I am just too tired to do anything anymore. They usually play quietly (or not so quietly sometimes! :-) for an hour before going to sleep. This isn’t just for me. In my opinion, most kids stay up way too late these days!! Except for special occasions, kids under 12 should go to bed no later than 8:30 p.m. Frequently, kids are grouchy and have bad behavior because they are tired (off track, but that’s my two cents).

 

Getting on Disability

A word about disability. I went on disability when I was 20. I used my own Social Security because had I worked since I was 15 and had enough credits. If I would have gone on my dad’s Social Security, I could have gotten $700 a month instead of $300 because I was under 21. Another big mistake, but we didn’t know at the time.

Anyway, I got on disability in 1991 when no one believed in Chronic Fatigue Syndrome, let alone in a 19 year old having it. IT WAS A MIRACLE I even got on! I DID NOT want to go on disability. I felt like I was giving up by doing it but I really had no choice. I had no medical insurance, couldn’t work even though I had tried to "force myself" to work, so I really needed help.

Now it is much easier to get on disability. I would say if you can, start applying as soon as you realize you can’t work any longer. You can always go off if you start feeling better. It still takes a long time to get on. You will be denied several times and have to appeal. It can take 2-3 years to get on sometimes. I have tried to work many times (at least 10 different jobs) in the last 22 years and I just haven’t been able to do it. Even with the website and book, I only do it about 5-10 hours a week now, which is why we haven’t made a very solid income from it yet. It is work like anything else and I just don’t have it in me to work 4-8 hours a day on this business.

I hope this helps give you some insight on Chronic Fatigue Syndrome and Fibromyalgia. There is a lot of information available on the Internet. Be careful what you believe and REALLY read up on some remedy ideas before you give it a try. Many people will tell you their product will cure you because they’re just trying to sell something. Not everything will work for everyone and not everyone will want to deal with the side effects of some things they try.

If you want even more information, Mom has written an e book, Common Cents When You are Sick, which goes into great detail about how to cope with not only FM and CFS but when you are sick in general.

      -Tawra

 

Jill’s Two Cents:

Hot water can make CFS patients weaker. For example I took a very hot shower once when I first got sick and I became so weak I couldn’t turn the water off or get out of the tub. I was alone and it was a scary feeling. The same thing happened once when I got into a hot tub. 

When I drive I can’t have the radio on, the windshield wipers running and someone talking a lot to me all at once. Too many different noises and activities make things worse, so I try to drive without the radio and avoid rush hour traffic.

I read a book on Multiple Sclerosis once and was surprised how many things that affect the muscles of an MS patient affect me too so I try doing some things they suggest to help MS patients.

Massages are a nightmare for me. Anything that messes with my muscles (exercise, excitement etc.) causes me to be weak and sick for quite a while.

We have included so much more in our Common Cents When You are Sick e-book– things like what I had to do with the clothes in my closet so I wouldn’t become overwhelmed.

Not everyone is alike and not everything works for everyone, so just try different things and see what helps you.

As Tawra said, many things that worked for her didn’t work for me. When I first became sick, I got really bad cold sores all over my lips like nothing I had ever had before. 

I went to the pharmacy one day and started talking to the pharmacist and she asked me about my CFS. She saw the cold sores and recommended Lysine for them and my CFS. It worked. I have not had the cold sores and, after taking the Lysine (minimum of 1,000 mg twice a day or more), it helped with my CFS.

She told me Lysine is a little known secret that helps with viral infections. She said the pharmacy companies don’t want people to use it because it doesn’t cost as much as cold medicines and they would lose a lot of money if people didn’t have as many colds. Whether this was true or not I don’t know but it does make sense to me and I do know it helped somewhat to control my CFS.

I also find it interesting that researchers have now found that CFS is probably caused by a virus, which would explain why the Lysine is helping me.

      -Jill

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Comments

  1. Paula says

    God Bless the three of you!!…I have put you on prayer lists…I also suffer from severe fatigue. I have Hashimoto’s Thyroiditis (where the body looks at the thyroid as a ‘foreign’ object and destroys it, leaving you Hypothyroid-underactive). It is passed genetically from Mother to daughter (my daughter has it), yet my mother does not. I was told that my soy based diet in my early 20′s (vegan) triggered it.
    I didn’t feel well and had every test in the book to find something/anything. Everything normal!…I worked at a lab at the time and started researching for something to diagnose this crummy feeling/exhaustion. I ran a Thyroid Antibody Panel (Anti Microsomal & Anti Thyroglobulin Antibodies)Viola! They were through the roof!! However, they (dr.’s) don’t treat it until it actually destroys the gland. So until my other ‘normal’ thyroid tests were abnormal, no medication…A lot of your symptoms are the same as mine. Don’t know if an antibody screen might help you, but it is food for thought. I currently take 500 mcg of synthroid (near toxic range) daily and my thyroid only regulates for a short period, leading to the worst flu symptoms, hair loss, etc know to mankind. People think (and say!!) that you’re lazy, fat, slob etc…They should walk in these shoes for a few months and see what it is like!…Please take care of yourselves- you’re great people! Please know that I’m thinking of you and praying for a cure!…God Bless!!

  2. Kristie says

    i have learned with my fibromyalgia that melatonin, and benadryl are my life savers. the melatonin helps me sleep and i mean the real sleep when you dream sleep. and the benadryl helps with the sinus problems most people with fibromyalgia have. stress is a big problem for me. but with 2 kids and one of them being totally disabled stress is something that i have had to learn to deal with.

    cutting out most all processed foods has helped me alot.

    i loved the information that you gave.. thanks

    • says

      I take benadryl almost every night too. My problem is that even the smallest does (I’m talking 1/2 of a child’s dose) leaves me hung over in the morning! I was just thinking this morning how I wish that I could find something that would help me sleep but not leave me hung over. I will have to try the melatonin again.
      I didn’t realize a lot of people with fibromyalgia have sinus issues! That’s very interesting!

      • sandy says

        Thank you Tawra,

        Thank you so much for being you and true to yourself. My mother died because of fibromyalgia and I am sorry you have that too. I love everything about your newsletter and thank you.

        Sandy

  3. Suzipam says

    I take Trazedone. It is a Rx, but it is non-habit forming. I take 2 every night religiously. It works on the chemicals in the brain. It helps me tremendously.

  4. says

    For 20 years I was told I had fibro. Everything I would complain about got the response well you have fibro you know.
    They would fix something and it would help but I still had fibro.
    Finally I was sent to a rhumetologist and he looked over all my years of symptoms and treatments and he told me I had sero-negative Rhumetoid Arthritis.
    That was 4 weeks ago. He put me on pills that I take 2 days a week and told me it would take 3-4 weeks for them to start showing results. Well for the past 3 days I have been pain free.
    I would tell people I was born with fibro since I have hurt my entire life and they laughed saying it was not something you could be born with. Turns out I wasn’t. I just didn’t have it.
    Here is why it took so many years 55 to be exact. It does not show up in blood work. that is why the name. You have to look at everything that is happening to your body and joints. It doesn’t disfigure you at all until it reaches the joints in the fifties and older.
    So next time you are talking to your drs. ask them to check into whether you have RA or if it really is fibro.
    20 years of pain that could have been stopped if they had checked harder is pretty mind boggling and I am still shocked that I can sit and knit for an hour without getting stiff and sore and needing pain meds.
    nice feeling though.

  5. Marie says

    Hi, I have all the same problems and when I went to a bone doc he ran tests that showed I was severly depleted on Vit D and B12. I feel better now,not perfect but better. He said most doctors don’t even check for these 2 vitamins and they should for anyone with our problems. God Bless to all

  6. says

    Marie, when my dr. said to take vit. B12 I went to the drug store and couldn’t find it. asked the pharmacist who I have gone to for 26 years and he said to get the chewable ones. I hate the taste of pills so I asked why. He said if you are low on B12 it is because the B12 is not being absorbed so if you take the chewable ones it gets absorbed much better.
    After trying both the chewable seem to be working to better effect.
    I have been taking it for 5 years now and feel so much better.

  7. GardenGal says

    Hi,
    I find your website very inspiring. I orginally looked at it for money savings, but was pleasently surprised to see you had Fibro and CFS. (no offense) I have these two diseases too and many other auto immune diseases. I find friendship and commradory at your website even though we have never met. I appreciate that you do this and I know how hard it is to do this every week. But I also understand having a goal and something to look forward to doing and having a purpose. I was a work-a-holic and I have had a really tough time coming to terms with my chronic illnesses. (Still working on it) It has been almost ten years since I first started getting sick. Before that I was an athlete and one of the go to people in our church, school and family. Many people didn’t/don’t understand my dropping out of the crazy world of “I must do it all” world. I also worked full time – night shift (10 pm to 7 am) And I worked a lot of over time and 12 hour/ 7 day a week shifts with a family and sick parents and disabled siblings. I can’t believe I did all that looking back now, no wonder I crashed and burned. I could barely leave my house for about a year, let alone my bedroom. If you can immagine how bad it was, it ws ten-fold worse than that. But I am a fighter and battled to get disablity (took two and half years) and to get myself stronger. I’ve read alot and at times am more informed than my Doc. But everyday is still a fight and I really appreciate your inspiration to keep going and to get through another day smiling. To be thankful for small wins and the Lord for his grace to appreciate them. So continue to march on Tawra from the sofa, and I will do the same. Thanks and best wishes.

    • says

      Gardengal, one thing I find interesting about people with CFS and Fibro is more times then not they are of the same type of personality you described with many irons in the fire and very strong hard workers. When we were on the study with the CDC they came to the same conclusion. I am like you I look back at what I use to do and think first of all how did I do it and second why did I do so much. It was rather crazy my “normal” life. I know what you mean too about knowing more then your doctor. When we first got sick – 20 plus years ago – there was nothing about our illness at all. My doctor had a patient come in and the doctor asked me if I thought the patient had CFS because I knew so much more at the time then even any thing the doctor could find on it. I just roll my eyes every time I think about it. People are learning a little more now but still aren’t excepting it or totally understanding.

      Anyway so glad to have you as one of our readers and really enjoyed your post.

  8. says

    Jill that type of go getter personality seems to be the norm for people with fibro.
    Now that they know I do not have it I will say that was one of the reasons that I didn’t think I had it.
    You would be hard pressed to find a more laid back person. Things rarely upset me and I go with the flow or take my own way of doing it.
    Mind you I am not lazy I do my share and more but it is not the be all and end all of my life.
    I was educating the doctors in town lending them books and sending them sites for people with fibro. The next wave of people who came for help from them got better advice than I did.
    Education is the only way to get a handle on this disease and if the people suffering from it give up then the professionals will go on not believing it exists.
    Your site does a lot to educate the sufferers as well as the rest of society. Keep up the good work.

  9. says

    here is a poem I found about coping with Fibro and CFS. And life how it is different.
    I thought you might like it.

    My Life

    Up in the morning wash and dress,
    make the breakfast have to rest.
    Pace myself though out each day
    I know this is the only way.

    I long to walk again through woods and fields but oh! the pain
    will not let me go, so here I sit,
    I will just have to imagine it.

    What joy my lovely garden brings,
    I can see so many things.
    Beauty I did not see before
    this creature landed at my door.

    So many things have been lost,
    my mind my friends my social life.
    I hate the dependent I have become,
    having to lean on everyone.

    Now, to reflect upon my life,
    I am the same person, the same wife.
    I can still do things every day
    although not in the same way.

    A better person I have become,
    Iv`e learned to love everyone.
    I hope and dream of a cure
    but in the meantime I will live,
    and enjoy life that’s for sure

  10. says

    Jill and Tawra, I would like to get your opinion on something. I am considering applying for disability benefits. The only thing is I have not worked 5 out of the last 10 years. I have had fibromyalgia for 13 years now. I never thought I would be eligible for disability, but am learning that it might be possible for me. I have been home, raising my children and homeschooling them. I feel this should count for something. I would like to know do you think my chances are good for approval? I understand that I may be turned down at first, but am willing to reapply as long as I know I might have a good chance. Please share, what are your thoughts?
    Sincerely,
    Michele

    • says

      I would say at least try. They told me I was a hopeless case when I had to go on at 19. The told me there was no way I would ever get on. Two years later (that’s about the time it took then, now I think it’s a year) I was on and my lawyer couldn’t believe it!

      About 90% of the people get turned down the first 2 times so just keep appealing until you can’t any longer. It can’t hurt to try! Tawra

  11. Ashley says

    I have fibromyalgia and CFS (though the CFS hasn’t really bothered me so much for the past two years as I’ve been on a new treatment for it). I’ve been sick since I was 13. This quickly turned into being REALLY sick, as you understand. Now I’m 23. Just a few thoughts

    Take a lot of vitamin D. Your body really needs it, and it is hard to get when you are so sick you rarely spend time outdoors. An adult can handle up to 50,000 IU a day so don’t worry about overdosing. I take 5,000 a day. I have noticed a significant increase in energy throughout the day. This didn’t happen overnight though so keep taking it faithfully. I have also noticed that I can fall asleep, stay asleep, and wake up feeling like I actually SLEPT! As anyone with CFS knows, that is huge! Plus I hardly ever get sick anymore. I was sick only once last year despite quite a bit of contact with ill people.

    Also, Emu oil works on your muscles like Ben Gay. This was thrilling for me because I can’t use menthol products anymore. You just rub a small amount into your muscles. There also isn’t that strong smell to deal with. This is a little more expensive ($7 for a small bottle) but it lasts a long time.

    Those are just a couple thoughts. I thought of more, but have since forgotten. :) Will post again when I remember.

  12. rose says

    ashley .. i have read the same thing .. not sure if this is true bc i do not have CFS and/or Fibromyalgia ..
    but vitamin D3 is great to help deal with alot of other health issues too .. i also read that the D3 is the best to take .. it absorbs in ur system the best ..
    my ex mom in law suffered for yrs with the Fibromyalgia b4 she died .. it was so hard to see her suffer with this ..
    i feel so bad for people with this and pray that there will be some kind of “miracle” drup or vitamin that people can take and reverse this ..

  13. Susan says

    I to was like Garden Gal, overachiever, then crashing about 12 years ago, one year after I started a new business and then a 2nd. Dr’s acted like I was crazy, I would get sick all the time and my business was with the elderly and they were fine! So, then they told me stress and my immunities were down due to doing too much, I continued, but I drank 3 pots coffee and then antihistamines to get my 45 minute intervals of sleep. It took 6 years before I found a Dr who knew what they were looking at, from what I told him, he poked around and I had all the points. So, wonderful, now I have a name for it so how do I manage? After trial and error with meds, pretty good, but, this past year has been really bad. Most days I can barely walk it hurts so much. Selling one business, might the second, but, not sure how the disability thing goes on other income? I have a few rental properties, after bills, not a lot of income when consider vacancies and evictions. But, I don’t even work at my business, it is on auto-pilot and I manage by phone. The stress still gets to me, even though not nearly as much, like hyper-sensitive to things now. Does anyone know much about getting disability with still having income, for at least now? Thank you, I enjoy the newsletter and have bought your ebooks, good work!

  14. susan says

    to all out there who are intrested in how i control my pain i limit my intake of tomato, potato, choclate, and especially pork.these foods seem to cause the pain to “spike” i also find that calcium maginisum zinc combo along with vit.B-12 2 times a day leaves me almost pain free. it doesen’t seem to help with the fatigue, but i thank God for leading me to this. I also find that women suffering from PMS usually have fibromyalgia,and or hypothroidism.last ly it might take up to 3-4 weeks to see a difference. but in my case it only took about 10 days. will add more later.

  15. says

    as for zinc use it with care.
    take the 10mg tablets as more than that a day gives you an overload.
    also zinc has the ability to stop absorption of other essential vitamins and minerals.
    If you are low on iron avoid zinc.
    Another thing about fibro that I have heard from so many people is their hair either dies or falls out. By dieing I mean no body at all.
    Try taking flax seed oil in the capsules. When they told me I had RA not fibro they put me on pills and my hair was falling out. It was more snapping at the roots but had progressed to the roots. My hair is the one thing that was still the real me after all the years of ups and downs and meds. So I was desperate.
    Started taking 2 flax seed oil pills a day and 3 weeks late my hair had some body. 4 weeks and no more cleaning the hair trap in the shower every day.
    Now I like my hair again. and I am getting compliments on it from every where.

    • says

      I read a book years ago on the wonders of apple cider vinegar but in it the gal said once she had got a bad hair cut, really bad hair cut where it was 1/2 inch short and she had to go to a special event in just a few weeks. She mixed herself a drink with flax seed, wheat germ and egg and her hair started growing by leaps and bounds so that makes sense grandma.
      Thank goodness now a day we have things like flax seed pills we can take instead because the drink was pretty nasty.

  16. Jackie says

    I agree about the cable/sattelite TV! We haven’t had it for about 8 months and I’ve really noticed the difference in my mood. It really does help to have it!

  17. Jackie says

    to the poster Michelle – Just curious, how have you been able to support yourself and your kids while staying home? Do you own your home?

  18. Wanda says

    I have Fibromyalgia and have been trying this drug the dr, gave me called Savella it really helps with the pain but the cost of it is for the rich a one month supply was $148.00 who can pay that every month i have been following your web site for several years now and was wondering what seems to help you the best I am so tired of being tired and in so much pain.

    • says

      Wanda I wish I could say just take this … and you will find relief but to be honest between us Tawra and I have tried almost everything out there, things the doctor suggested and tons of natural things and have yet to have anything truly work really well.

      Now different people react differently to things so that is not to say you shouldn’t try stuff. The bottom line is Tawra controls her Fibro mostly with hot baths, massage and exercise. None of those get rid of the pain totally but they do make it more bearable.

      I know exactly what you feel because each night when I lay down my last words are usually I am so tired of being tired. But there is a little light at the end of the tunnel. You can learn to function some what. We now know what will make us worse and try to avoid those things (not always easy when you have a family). If it can’t be avoided then we work around it.

      For example going to the store makes us exhausted so on the days we need to go to the store you put a pot of soup on to simmer before you leave so you don’t have to worry about supper that evening, we go at a time where there is less of a crowd so we can get in and out, we have them sack the refrigerator things together so that we can leave the can goods in the car for kids or husband to unload later. When we get home we make sure we have no other major things to do for a few hours or the rest of the day.

      This is just an example of how you start adjusting. And we are forever having days like today when Tawra just called and said “I feel so bad today if the angel of death came to my door I would more then willingly go with him just to put me out of my misery.” Now for normal people you would immediately think those are suicide thoughts but for those of you with cfs or fibro you know exactly what she is feeling and we are talking about. But we still hang in there.

    • says

      I would say if you are only spending $148 a month a meds and it’s helping then do everything you can to afford it. I spend way more than that on supplements, meds, massages etc. and none of it is working that great. I tried the Savella and it didn’t work for me.
      The one thing that has helped a lot is nuromuskular (sp) therapy. The bad part is the only guy who can do it on me and have it work is 500 miles away and costs $100 a treatment. He said I would need at least treatments every week for 2-3 months, then every two weeks and then monthly to get me back into some sort of “livable” state again.
      That’s one of the reasons we want to move to Colorado so that I can get treatments from him.

  19. rose says

    i am so sorry both u and tawra are not feeling well with the fibro and etc .. jill …
    i hope maybe when the weather gets warmer, you will be feeling better …

  20. rose says

    my brother doesnt have the fibro or the cfs .. but he does get lots of aches and pains …
    and he says by drinking this one type of tea helps him alot ..
    not sure if this is true bc i just got some today at the store and i got a different brand than what he gets bc that is all that is sold at my supermarket ..
    he drinks “lifespan tea” .. its african rooibos red tea…
    i got the same tea but mine is from twinings .. and he says his is organic but mine doesnt say that ..
    when i was looking for the tea in the coffee/tea aisle at the store today, there was a woman who came up to me and got the same tea (that is really how i found it; so many tea’s to look at and choose from, it can get quite overwhelming, to say the least) and she said this is awesome tea and helps her when she isnt feeling her usual self .. (whatever that means, i didnt ask and well she seemed to be in a hurry too) ..
    again, i am not sure if this will help, but my brother recommended and i waanted to share with u and tawra and everyone ..

  21. Jackie says

    Jill and Tawra, When you applied for Social Security, did you own a home? I rent currently, and it is so much more stressful not knowing what the living situation would be if I applied for SS!

  22. Lydia says

    Hi Jill and Tawra. For years I’ve suffer of pain and been very tired. Dr’s never found anything wrong with me, until I visited the rheumatologist. I was diagnose with Fibro about 7 months ago. I’m currently taking Lirica at night and Cymbalta in the morning and I just started visiting the Chiropractor once a week for massage therapy. My symptoms sometimes get better but i have my days where i can not do anything because the pain is really bad and i’m always tired. Tawra, I’m just wondering if your taking any medications for you fibro. And if you do, can you tell me which ones?

    Thanks

    • says

      Lydia, Tawra is taking no medication at all for her fibro. She has tried all of them at this point and the side effects have been worse then the pain. Right now she has gone a sugar free, gluten free, dairy free (food free HA!HA!) :) diet. It hasn’t helped with her fibro but has made her feel better with other things.

      Going to a nero(nerve) muscular (sp) massage person has helped her probably more then anything. There is a difference too between that and just a regular massage. A regular massage is something that sooths and relaxes you on the spot at that moment and maybe for a few hours afterwards. The other goes deeper and has a much more long term effect.

  23. Liz says

    I too have fibro and was diagnosised a year and a half ago after many many tests. I also found out at the same time I have celiac disease. I have been gluten free ever since. I loved reading everyone’s comments to know I am not alone. The evening is the worst for me…probably because I over do it all day. My husband’s 100% disabled vet and I have 2 teenage girls. I try to do everything I have always done but it gets harder and harder. I can’t even think about a massage. I cringe everytime someone touches my muscles. I got in a car accident 6 months ago and had severe whiplash. They tell me it will take me longer to recover because of my fibro. The other person’s car insurance doesn’t want to pay because I have fibro. Messed up huh? I recently got injections in my neck muscles and it seems to be helping. I did take trazadone but had nasty reactions to it so I’m sticking to cymbalta and carispidol (heavy muscle relaxer) but in the mean time if anyone has suggestions on how I can back to taking long walks or skiing again I’d sure love to hear them!

  24. Pat says

    I have had Fibro, Chronic Fatique, and IBS for over 30 years. Way before it was recognized by anyone. I remember how justfied I felt when the gov. gave their first $50,000 grant for research. In the beginning years I had most (including family members) who thought it was all in my head because they could not see it and the the doctors called it milingering or depression etc. I have tried all medicines and after a short while they all stopped or never started working. Many sleep meds cause terrible nightmares so they aren’t worth it either. I now have a pain Specilist and take pain medication only. I had to learn to adapt, do what had to be done when I felt I could and let a lot slide. Not the best solution but is doable.
    I can do pool exercise if the pool is heated but finances limit that. I also have had back surgery and that causes quite a bit of pain. Most days I do ok. With a lot of list and planning I can still do the Holiday Cooking for my family that now total 30. It is doable with pre-planning and pre-doing and accepting that I will be out of commission for 2-3 days after. I try to choose wisely and don’t do much socilizing but at this time it seems to work. Wish I could offer more than hang in there. I will be 70 this year and do not expect things to chg. but will do when I can and not do when I can. One thing I won’t do though is feel guilty because I firnly believe that this is wher the Lord has me.

  25. Liz says

    Dear Pat: You made me realize I need to accept the fact I will be out of commission for 2-3 days but it’s okay and I should not feel guilty for it! It’s nice to hear it from someone who understands :)

  26. Tami Burd says

    Hi there!
    I too have have Fibro for over 30 years. In addition, I am bipolar and suffer from chronic depression. My daughter who is 27, is Bipolar, she hasn’t shown signs of fibrous of yet, Thank you Lord!
    I was surfing through and found your page via finances. Thank goodness for your postings. I am geographically located away from all 3 of our kids and the 2 grandbabies who are my life. And for some reason, hubby who was very supportive of this horrible life stealing disease, has isolated himself away leaving me even more alone. I was a Paramedic, and very good at my job. I love people. I love being out in the world. Being stranded at home going weeks with out seeing others, days without speaking to the kids, they do have lives, I know. This is not the life I carved out for myself. I am sorry to vent but, I know someone here will know exactly how I feel. I couldn’t wait to be a Wife,Mom & Nana, now every one of them are just outside a fingertips reach most days.
    Between the fibro, depression and the alienation it’s hard to get out of bed some days.
    Thank you for letting me vent,
    Nana-with Newfies

  27. pomogirl says

    i hav just visited your website & was encouraged & tearful. Yet, I thank you and your viewers for all of the input about their persoanl expierences with CFS &b Fibroyalgia….I hav these and many other illness’s that has completely changed my whole life as I knew it. This is part of life for all to undersand, that none of your viewers chose this type of “hard & debilitating life” for themselves. So we all need to remind ourselves that we are not singled out personally to suffer this way. It happens due to hereditary factors and environmental factors,& this of all points…we are imperfect humans…which means we are to live within that concept. trying our best to heal as we can, doing all we can for our health needs.As we hear how others are coping we are encouraged, because we dont feel alone in the struggles that we face personally everyday. This is positive! and it actually heals from within…because when we know someone else understands us & our trials we go through, we muster up the strength to contnue. Yes many things have changed..but who do you remain as the inner person? We love our families & we love our friends, but they have no clue to understand exactly how we feel…but they love us still. I hav only a handful of friends left to comfort & encourage me, plus some family too. Make sure you get the love and attention you need, when you need it. I made myself get out of apt, & told my friend I needed to be in the land of the living for alittle while…you laugh! but you know exactly what I mean. It helped to get my mind off myself for a brief time. And I felt a part of the humanrace again…later it was exhausting..but worth it. It gave me time to make memories again, to feel a part of life again, even though I knew I would be down for sometime or mayb not. The point being is , Yah! were ill, but that doesnt mean stop caring about yourself or others. you need acknowledgement like the next person too. So everyone thank you again so much for your imput. I hope to hear many helpful tips and ideas to better cope when you have an illness. your fiend pomogirl

  28. says

    I was just thinking and posting about ways that I can conserve enery myself. Funny how these posts come along just when you need to ready them. I don’t have CFS, but MS. The fatigue with MS can really get on top of me sometimes. I have my own coping mechanisms, but am always looking for more. I am lucky enough to not have other physical disabilities due to the disease (at the moment); they come and go. I still work, but can feel the fatigue creeping up on me at the moment. I hope I am able to continue working for some time, but I know the possibility is out there that I won’t. I did have to take 2 years off on disability at one time due to a double whammy of MS and a tumour, but was able to return to work after surgery succesfully took care of the tumour and I felt better than I had in years.

    I don’t currently take any meds for the disease (was on too many for too long and am enjoying a brief drug free period). I do have an understanding family and lots of it, close by. My husband loves to cook and my girls (8 & 10 years old) are starting to help with general around the house work. That takes so much off of me! I may be able to work still, but by the time I get home at night, I’m pretty much used up. I save the last little bit of energy for kitchen clean up, then if there is any left over, I will try to accomplish something else. If not, its just time to relax with tv or a book.

    I find that any cleaning that needs to be done can happen on an every 2 week basis as long as I keep things tidy and the floors clean in between. I wipe up the bathroom after morning use. I dust a room quickly while watching tv in the evening.

    And, when all else fails, I tell my husband that I am done and go to bed.

    On weekends, I generally take one day for rest and one day to catch up to any work that needs doing.

    And most of all, like you.. I regret ever having bought this big 2 storey house (with laundry all the way down in the basement).

  29. Pam Reichenberger says

    Wanted to share with you our story. My husband was told he had Fibermyalgia, MS then it was maybe the early stages of ALS. Pretty much was told to deal with it. We were not happy with that answer so we searched. We came across Lyme. We had already had two negative lyme tests so we werent sure. Then after finding out the tests are not accurate we looked into it. Thank God we did. We found a Lyme literate Dr. which isn’t easy, but a God send. Got a test through Ignex through the Dr. office and got a postive result. He is back, my husband is back, he was so sick. He had so many of your symptoms. You do not have to remember a tick bite as they are very small and do not have a rash 70 percent of the time. Lyme is here we were told it was not. We started a support group in WIchita Kansas last Fall. We have seen and helped many people get better. It is a long road but you can get better. I just felt I needed to tell you guys. God Bless you and may you find peace and healing.

  30. Shari says

    I had pain from about elementary age. So bad in junior high, I had mri’s done and no one could figure it out till I went to a chiropractor and found out I had scoliosis, lordosis, tilted pelvis 2 directions and tilted ribcage. A couple years later I was diagnosed Bipolar. Massage therapy came into my life at that time also and it helped me trememdously. Fibromyalgia hit me as I was going thru massage school a few years later and the pain was at a 12 on a scale from 1-10. A couple years later my rheumatologist told me to make sure and not get pregnant as I was engaged at the time because my body could not take it. That was when I decided that I wanted to be in control of my body not my body controlling me. I started a 2 year campaign to take back my life. Massage, stretching, 8 hours rest at night if I could, drink a gallon of water a day, avoid fatty meats, start walking even if just to the road and back and no matter how it hurt. I found, that the more I hid from the pain, the more I hurt. Moving will actually help the pain if you can get past the first part. I was saved at that time and became a follower of Jesus Christ. He helped heal me mentally and I have been medication free since 2004. (But one must come off meds much slower than the doctors recommend. I spent 2 years coming very slowly off 100mg.) My fibromyalgia is managable and I have few problems as long as I stay on top of it. I have 3 children the oldest 6, the youngest 20 mo.
    Don’t let your disease define you. Take your body back. Don’t focus on the pain or fear it, for that will only make it worse. As a massage therapist for 12 years, I have seen people jump leap and bounds in their progress to defeat the disease with the right massage. Never start deep, stay light pressure for the first several massages. It releases toxins out of the muscles that if not flushed out after with drinking lots of water can cause you to feel sore, or even like having the flu. I also went to a nutrition specialist and had a hair analysis done to find out what I was low in. It seemed kinda off the wall, but it really worked and helped me tremendously! Don’t give up, don’t live in fear of the pain or it will control you. Make a decision to live for Jesus and He will be able to then help you along the way. He loves you more than you know.

    • says

      You can try many of these things mentioned and Tawra has tried all of them. For some people they work but if they don’t please don’t get frustrated and feel like you have failed in any way if they don’t work.
      I’m not trying to be negative but we have done all the above and sometimes God allows a disease to stay with you for what ever reason. The same way we rejoice when He heals us and have faith in Him we need to have faith even if we aren’t healed.

  31. Lisa says

    Wow-I am almost in tears after reading all this…I guess I’m not in my “own Little” world after all. I wish sometimes that my teenagers would understand, but I suppose it’s outside their realm at this age. My husband understands but needs me to be able to work more to help us get by. The only thing that has helped me is a regiment of B vitamin, a complex and then extra b6 and pantothenic acid (another B vit). My natuopath many yrs ago wanted to put me on some steroid type treatment and I did some research to discover the B vit alternative. I get sooo tired of taking stuff though…vitamins, motrin, benadryl….that I sometimes go off of things cuz I think I’ll puke if I have to swollow one more thing! I know I’m ranting but so relieved to see that people do figure out how to make life happen. When my kids were small and I was newly divorced, I worked full time and would have to pull over to sleep on the way home. At home I’d have the oldest one still in grade school taking care and making pb&j for dinner for him and little sister so I could go pass out. It was a crazy time, but just the daily stuff was more than I could do. Thank you for being here. Bless you.

    • says

      I know just what you mean Lisa. When we first got sick 20 years ago there was almost no one who not only had CFS or FM but you didn’t read about it and no doctors had even heard about it. If all 3 of us hadn’t just got it out of the blue I would have thought we were crazy. I remember the first time I meant someone else who had it. Our pastor called and said a man at the church was having a really hard time and he had CFS and wanted to know if I would mind talking to him. When he stopped by and started telling me about his symptoms I wanted to break down and cry. He said he had these weird small bumps on his head and I remember thinking “I’m not crazy. He has small bumps on his head too.” and thinking how dumb it was to be so excited because someone else had weird bumps. The bumps are now gone and I can actually get out of bed but it was a comfort to know someone else was going through the same thing.

  32. Kyle says

    When I started searching for coupon and debt sites, I had no idea I would run across advice on Fibro! Dave Ramsey sends out tips and tricks, and he recommended a Smart Money article that mentioned your site. Browsing the ebooks brought me here, and I’ve read every comment. How fascinating!

    I was diagnosed with FM about 5 years ago, and my doc did try to eliminate some of the other diseases mentioned here (arthritis, lyme disease, etc). I don’t have a very bad case at all, but when I tried coming off my meds it didn’t take long to realize how much worse it could be. Some of these tips mentioned here are new to me, but they are worth a shot. As Jill said here, not everything works for every person!

    This is the first I’ve read about CFS. I’ve been commenting to my wife over the last couple of months that I don’t feel so much pain right now, but I get SO TIRED every night that I give up on whatever activity was planned for the evening. The only thing that I want to do is just sit and watch tv, and that’s just wasting time when we have other hobbies to work on. My wife enjoys watching tv. I do too, but there are other hobbies that are fun to me, but they take energy. Hopefully some of these tips will return that back to me.

    Thank you for taking the time to run this site. I’m your newest fan!

  33. Annette says

    Ok, after all that’s been said, have you ever been tested for MTHFR? It’s a common gene mutation that ultimately makes it extremely hard to metabolize vitamins B12, folic acid, and D. (that seemed to coincide with someone’s previous comment about being low on B12 and D) You can buy D3 (activated) easily, but finding methylcyanocobalamine (activated B12) is tricky because there are a lot of lozenges that are almost but not fully activated, like what Costco sells (that last methylation step is the problem). I go to Puritan’s pride to buy it in bulk. Also now the American medical association has decided to restrict activated folic acid (L-5-methylterahdrofolate) so you need a prescription for the higher doses. Many people are now paying higher prescription costs for a form of vitamin that used to be available over-the/counter only because suddenly researchers are finding it essential for some people. To keep it short, its a newer discovery and I’d check it out. I found it through prayer, i will be praying for you all, and I will also pray for more doctors to become educated about it!

  34. Veronica Tidd says

    I feel so bad for all of you and my chronic conditions don’t seem so bad.
    My husband has Bechet’s syndrome and frequently has “flares” when he is non functional. Apart from his usual medications his imunologist gives him a quick blast of high dose oral steroids which usually sets him back on what is as close to normal as he gets.
    I was wondering if any of you had been given steroids and if they were helful?

    • says

      My son has been given them for other medical problems but they didn’t help his CFS. To be honest between the 3 of us we have tried almost everything for the past 20 plus years and there isn’t much of anything which has made a big difference. I have found pacing myself helps the most. I try not to do certain things any more like big social gatherings and things like that because I know they will make me sick. Spending a long time talking to someone or on the phone flares me up. I have a whole list of things I try to watch as best I can.

  35. Thomas and Mercedes says

    Thanks for sharing your experiences with CFS and Fibro. While every CFS patient has a somewhat different version of the illness there are some commonalities that are very familiar. I can vouch for your suggestions. They are mostly familiar and it is good to know that we are not the only family that struggles with some of the effects of CFS. It can really isolate a family, especially if the CFS patient is an introvert. We are wondering about the long-term effects of having a disabled parent on our children. It would be useful to hear from anyone who now has adult children. Mercedes was diagnosed in 1994, when our second child was 2 years old. Our daughter was diagnosed with CFS when she was 17.

    • says

      I always say every family has some sort of handicap whether physical or other things or CFs so there is no reason my children should grow up any different then anyone else. It really is all in the parents attitude when raising the kids. If the parents are whiny and think they deserve special treatment because they have “special” circumstances the children with grow up with problems. If the parents treat their illness in such a way that this is part of life we do the best we can, keep on going and have a good attitude then the kids will do fine. I had 2 kids when I became sick. All 3 of us became sick with in about 3-6 months of each other. You talk about isolation. CFS is every where now. When we got sick no one had ever heard of it. Not doctors or other people. It barely had a name and no one else hardly had it. The first couple of years I was almost totally bed ridden. Rarely able to do anything. I would try to get groceries every couple of weeks but there were times I couldn’t even do that. I remember once we needed stuff so bad and I knew I couldn’t make it so I drove 5 blocks to the store and then Tawra was going to go in a just get milk and bread because I knew she would be too weak to get any more and I would be too weak from driving to go in. We pulled into the parking lot, both looked at each other and I could tell neither one of us could make it into the store so had to drive back home laughing how crazy it was.
      I tell you this because this was normal for our life. My husband had left. My family was having almost no contact with us and they lived in another state. We were on our own.
      I didn’t even have any income – no well fare, disability nothing.I had sold my business for 100th of what it was worth because I was to weak to make deals etc. for $8000 and that is what we lived off of for 3 years. I say all of this not for pity or anything but so you will understand it was pretty bad. Anyway my kids had it rough in that sense but they grew up to be fine great, productive, responsible adults in spite of their illness. I never once even thought or questioned that they would do anything else. Life happens and this happened to be what happened to us. It could have been so much worse and I was so grateful it wasn’t.
      Tawra now has an almost 17 year old, 16, 11 and 5. They are fine and doing great. They are no different then normal kids. They don’t even think anything about our illness. We try not to make a big deal out of it, worry, stew or study what it will do to them. We just live life. We laugh a lot and in one way I think the illness was the best thing that happened to us in the fact it drove us closer in many ways more so then many kids are with their parents. There is always an up side if you look for it.
      It does isolate you but I find ways around that too. I may not be able to drive out to see my grand kids as much as I would like but I skype them almost every day. I can do that. Between kids and grand kids I can spend hours on the phone although I have to be careful because that can wear me out. You find ways. When I can’t figure out what to do and have done my best to but can’t figure out a solution, I let it rest and figure God has me exactly where He wants me and has me here for some reason and I don’t worry about it.

    • says

      My two cents is to stop worrying about it. For your kids it’s just going to be “normal” and they will turn out just fine if you don’t make a big deal out of it. My kids know I’m sick, we work around it when I can’t do things and life goes on. Really it’s only going to be a big deal if you make it a big deal.

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