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12/18/10 12:38 P

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Thank you for chatting with me right here. It might help someone else, too. I hope so.

I am 63 and hoping to retire soon. My financial guy says to stay 2 more years. Lots of people are urging me to stop working. I have many mixed feelings . Staying home isn't all that much fun either. at least the kids get me energized and laughing. I have grades 7-12, deaf, with special needs other than deafness. I have been there 38 yrs. and 2 years in another school system before this. My husband had a stroke 4 1/2 yrs. ago. He is in a motorized wheelchair and can't even stand up. His right side is bad. His brain is pretty good. But his motivation is non-existent. He can talk and spends time saying silly things to me and watching TV. I have an aide get him up 5 days a week so I can go to work easily. I try to do water aerobics 3 times a week to keep myself strong and as flexible as fibromyalgia allows. We have no family close by. And we have one grown daughter about 2 1/2 hours away. So I am on my own doing everything. I used to write on the caregivers team(s) but they seem to have fallen apart. I teach mostly science (chem, bio, physics, gen sci) but then they started giving me health classes. this year the new principle gave me what amounted to 4 of 5 classes PE! I panicked and eventually she agreed that I could expose the students to the physical activities. I only have a regular classroom with no gym equipment unless I take classes to other places in the school or bring equipment to my room. I feel like I am living in Alice and Wonderland. The whole situation is ridiculous. I have one chem class so I can still take trips on the boat with the students and another teacher. And I am taking the "Nutri/Fitness" kids to places like a martial arts studio. Actually the "PE" thing is easier and more fun for me that teaching a variety of sciences. So far we tried boxing, yoga, hop scotch, aerobic dancing from a video, stretching exercises.... One new teacher has been given a similar schedule. So we can plan some things together. I am delighted to be on Christmas vacation for 2 weeks.

I guess you and I do have some similar situations an dinterests. I take students to Long Island Sound in CT and my husband introduced me to Cape Cod, Mass. On Cape Cod his brother made our trailer mostly handicap accessible so I have continued to vacation there.

Thanks for sharing with me! Good luck and God bless you! Chris

I have to be diligent about caring for myself. MINDFULNESS NOW. Build habits to produce success. First habit: delay eating by using a timer.
LONG TERM GOAL: Reduce A1C,BP,tryglicerides,and weight.
Founder of this team: Evening Eating Sabotage Myself Frustration ..Help! www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=51755


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GRAMMACATHY's Photo GRAMMACATHY Posts: 25,444
12/16/10 12:38 A

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Where ever I am first team leader I have no rules and figure anyone can post what they want in any thread. Since none of the team leaders ahead of me have responded to me, I am going to just get chatty with you right here.

I am an Early Intervention/Early Childhood Special Ed teacher. My title is even longer and no one knows what it means. I see you are on the Special Ed teacher team. So I am assuming you teach or taught special ed. You are a middle school science teacher if I am not mixing you up with someone else. I think anyone who teaches middle school should have a halo.

My Hubby is sick and disabled. He can take care of his own needs and do a couple chores, but it takes him all day. I do all the shopping, cooking, cleaning, bill paying, financial planning....etc. However, he hired the handyman and is paying for it from his Soc. Sec. so I think that is the best Christmas present ever.

I love swimming. I love the ocean. I taught a Marine Science 4-H club one year. I also made a list on my Spark page. You made a list on your Spark page.

I hope you find a way to simplify your responsibilities. The Organized team has been helpful for me. Of course being off work has helped too, but there are days that I can hardly get dressed. I had four bad days last week, so back slid a little on the forward progress on the house.

Hubby's oldest daughter asked us to move into her apartment complex so she could care for us. She is such a sweet girl. Well...woman of 40. Right now it is cheaper to stay in our house as long as we can care for each other as needed. It takes two of us to make one person.
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Cathy
LALOgriefsupport

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CTUPTON's Photo CTUPTON SparkPoints: (212,099)
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12/15/10 5:44 P

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Well, I go from shores at school to chores at home... The only way I can get more help is to pay people. I have one daughter but she is 2 hours away and has fibromyalgia herself. Bummer.

If my husband went to a nursing home, he would get depressed. And visiting him would make me depressed.

What I'm doing is about the best I can think of. At least school pulls me out of bed in the morning. If not for that I just might stay in bed most of the day.

I am actually counting my blessings because I have friends and family who have to face much harder things than I have.

Thanks for welcoming me! We will have to talk more about those common interests! Chris

I have to be diligent about caring for myself. MINDFULNESS NOW. Build habits to produce success. First habit: delay eating by using a timer.
LONG TERM GOAL: Reduce A1C,BP,tryglicerides,and weight.
Founder of this team: Evening Eating Sabotage Myself Frustration ..Help! www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=51755


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GRAMMACATHY's Photo GRAMMACATHY Posts: 25,444
12/15/10 1:48 A

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Welcome to the team Chris. You are burning the candle at both ends.

Since my short time on here I have gotten to be a bossy know it all.

Two pieces of advice: Abstain from refined sugar for three days and see how you feel. Two much sugar can cause depression, pain, and fatigue. Also, have your vitamin D levels checked next time you see the doctor.

I am glad you joined. I think we have a lot of common interests.

Somewhere while researching my symptoms I read that one doctor who treats FM and CFS believes some of these issues may be caused by a microvirus that has not been identified yet.

I know I have heard of aderol. I think some of my students have used it. I will have to look it up.

Be sure to check the links and resources.

Cathy
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CTUPTON's Photo CTUPTON SparkPoints: (212,099)
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12/14/10 1:16 P

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Hi ! I am Chris and Iam happy there is a team like this. thanks for sharing your trials and triumphs. I, too, have been tired all my life. an d now i see my 28 yr. old daughter going through the same thing. It is heartbreaking for me.

She has been using aderol. She says it is the only thing that works for her. I have never used that. A sleep study told me I fall asleep in the afternoon. Duh. I already knew that.

I am on Welbutrin and something else (can't remember right now what) . I also have trouble with crying jags. But the fatigue is a much longer part of me--since childhood.

I was diagnosed with fibromyalgia as was my daughter. I do have lots of body pain.

Hi to you all. Hope we can help each other.

Many people say it is stress because i work full time and care for my husband who had a stroke 4 yrs. ago. But I was tired long before that happened. Chris

I have to be diligent about caring for myself. MINDFULNESS NOW. Build habits to produce success. First habit: delay eating by using a timer.
LONG TERM GOAL: Reduce A1C,BP,tryglicerides,and weight.
Founder of this team: Evening Eating Sabotage Myself Frustration ..Help! www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=51755


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GRAMMACATHY's Photo GRAMMACATHY Posts: 25,444
11/16/10 2:14 P

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After getting on the cpap, I realized, I had sleep apnea as a skinny child. One night on that thing and I felt like a new person.

One step at a time though. Get that celiac under control and next time you see the doc, tell him about your sleep issues. It doesn't have to be sleep apnea, it could be related to some of the meds you are taking.

I am also on a neurontin. Nasty stuff if not taken at the same time every day. It keeps me awake. I also can only take one third the dose recommended. It messed with my moods. A little experimenting helped me find a balance. Now I have to juggle the klonopin properly, or it keeps me awake too.



Cathy
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DEBBIERNSRMC's Photo DEBBIERNSRMC Posts: 462
11/16/10 1:20 P

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Dear Grammacathy, thank you very much for the link. I started reading it some and i find it rather interesting. I can already see some ideas to try. I totally related to the crash and burn cycle. I do that sort of thing for most of my life. I have this intense personality, all or nothing mindset. I make these to-do lists and then i go down the list and move as fast as possible and do what i can do. then i start over the next day. It helps to keep me focused and on bad days i can look back and see that i did get things accomplished, but it does push me to do more than i probably should if my real goal is to be productive. I should aim for a good over all quality of work, as opposed to frantic burst of work.
I havent had a sleep study done. I know that i have trouble falling and staying asleep. I have been this way since i was a small child. I look at the clock every hour and say to myself, "i have six more hours , if i go to sleep now i will feel mostly normal, i have five more hours of sleep" etc. When i was my heaviest, i had severe restless leg syndrome and though i would go mad from it. But now that i am in a normal bmi, that one symptom has improved. One step at a time and i will get a grip! knowledge is power right? thank you again! Deb

GRAMMACATHY's Photo GRAMMACATHY Posts: 25,444
11/16/10 11:59 A

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Hi Debbie,
Welcome to the team. Have you started your gluten free diet for the Celiac disease yet? Also, did the doctor do a sleep study, to rule out sleep apnea and other sleep related disorders. Believe me lack of proper sleep can cause a lot of physical pain.

Eliminating refined sugar and wheat from my diet really helps lower the pain level.

One of our fellow team members gave us this link, and I have found it very helpful.

www.cfidsselfhelp.org/library
/2-find-y
our-limits


Good luck on your journey to better health.

Cathy
LALOgriefsupport

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DEBBIERNSRMC's Photo DEBBIERNSRMC Posts: 462
11/16/10 11:02 A

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Hello there all. I just joined the group today. Yesterday was the culmination of so much work, so many dr visits, so much stress and anxiety. I have been struggling with pain for the past 4 years from a car accident, trauma to the knees. but in the next few years, the pain in my knees had spread to my entire body. Then i was becoming so tired it was all i could do to get through a day of work and then was so drowsy on the way home. I have horrible sleep at night and it has been that way for as long as i can remember. I went to see a neurologist about 6 weeks ago and he ordered a TON of labs, (18 tubes) of blood. Yesterday i went to see him and go over the results. I have been in a funk and a cloud and upset ever since. I have a high level of Eppstein Barr Virus, and chronic Fatigue, I have celiac gene (beleived to be the root cause of my pain and majority of health issues) i have a genetic clotting syndrome. So, i am a broken busted up person and i got all sorts of crummy genes. I wish i was able to take a few days off to read up on these things and wrap my brain around it and just get my act together, but i do not. So i am at my desk doing work and here on Spark. (which incidently is part of my job, so its not all bad). I am trying to be optimistic that having answers to why i feel so crummy, is a good thing. But it isn't working so good. Debbie

GRAMMACATHY's Photo GRAMMACATHY Posts: 25,444
10/25/10 5:20 P

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I finally got a diagnosis today after everything else was ruled out. Chronic Fatigue Syndrome, so I guess I found the right team. It is nice to have something specific to work on. I really don't know why that was important to me, but I hated being in limbo. Now I can make decisions about work, money, lifestyle, etc.

Cathy
LALOgriefsupport

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TEENYSMOM's Photo TEENYSMOM Posts: 5,725
7/24/10 10:16 A

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I have been diagnosed with hypothyroidism, migraine headaches, Chronic Fatigue Syndrome, Fibermyalgea (sorry about spelling) and Scoliosis...to name the major stuff.

I rarely have energy or feel like doing anything, even things I like doing I have to push myself to do. I am often not just tired but literally sleepy.

I take full time care of my physically disabled husband (bathing, shaving, feeding, dressing, getting in/out of bed, on/off toilet, cooking for, driving for) and mentally disabled adult daughter. It is not an easy job, but I somehow manage this 24/7 job with no time off.

Ok, I will quit rambling now. Sorry to be a pain.

~~Starr~~

MAKE 2020 THE BEST YOU CAN.

REMEMBER, JESUS LOVES YOU--ALL THE TIME!!

"RIP MY SWEET, SWEET ALAN. I WILL LOVE & MISS YOU FOREVER."
~~~~~MARCH 3rd 2014~~~~~


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LOVINLIFER72 Posts: 48
7/4/10 3:07 A

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I have read several posts that people have written lately and wanted to share that you can test for Lyme disease. I never had a rash and I have both lyme and CFS... and a few additional things to make my life more interesting. Lyme disease affects people differently, but common to have joint pains, fatigue, tiredness, vision problems, speech issues, and no memory. As well as a whole list of other things. I have been treated and I have my life almost all back... Still working out a few kinks, but I am not complaining!! Also, I had to learn to say that I was sleepy and not just tired all the time. And, when I would say I was fatigued as in i cannot walk down a flight of stairs without being winded... usually I would just say fatigue. I had to learn that the doctors were interpreting everything as the same and not 2 different things... Just thought I would pass along...

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7/4/10 2:13 A

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I also feel that my fatigue can not be blamed on fibo alone. I have trouble driving (and so I only do miminal) this frustrates me. I am so tired I have trouble concentrating and vision problems so I have to rest up for hours before I feel ready to go out so I can drive safely.

You get credit for what you finish, not what you start.


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7/4/10 2:09 A

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Fibromyalgia-never have a normal nights sleep in many years-degenerative disks, osteoporsis etc.

Has anyone heard about Vitamin D deficiency with many Fibromyalgia people?

You get credit for what you finish, not what you start.


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SINGLEMOM1960's Photo SINGLEMOM1960 Posts: 992
6/11/10 1:07 P

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I know this isn't a religious-themed team I am posting this here too...
While I hate complaining and being a burden, I do need prayer. I am in pain 24/7. My left side seems to be shutting down bit by bit. First my neck and shoulder, then the wrist, the whole arm, then my foot and ankle, the leg and thigh, now it's my knee. It is pinched nerves caused by my DDD, which I have down my entire spinal column. My neck and shoulder are in constant pain. My left arm and thigh tingles with pins and needles like when your foot falls asleep, and this never ends. I have seen Doctors, Physical therapists, and now am seeing a Chiropractor on a regular basis. But I am so tired of being in pain and exhausted every minute of every day. Of living on pain meds, of not being able to move or exercise without paying a drastic price. Even standing up and cooking dinner is difficult.

Sorry this has gone so long, I am humbly asking you for your prayers. No one here really knows me, I don't like asking for help or being a burden. But I feel led to post this to my teams. Thank you so much.
In Christ's Love,
Michelle

No matter what you're feeling on the inside, if your outward appearance looks good, people will give you positive comments. These positive comments will help you on the inside.


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OUTDOORMOMMA SparkPoints: (0)
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6/2/10 9:50 P

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I have yet to be *officially* diagnosed with anything. The closest thing to a diagnosis came from my sleep study doctor who believes that an illness (that triggered the whole fatigue business in the first place) has affected my ability to produce oxycretin (which generally keeps you awake). There have only been case studies thus far and the only way currently to test for it is a spinal tap and that isn't completely confirmed yet due to a variety of factors involved with measurements. But they are finding that certain viruses (which my whole team contracted during a competition) and head injuries cause this.

All other tests come back absolutely normal but yet I battle fatigue constantly which is making the unofficial diagnosis seem more and more the likely culprit.

Nicki
my darlin' Alan
the arrows of our quiver: DS 22; DS18; DS17; DD16; DD14; DD11; DS9; DD7

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KELLCO123's Photo KELLCO123 Posts: 24
5/23/10 2:22 P

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i was diagnosed with CFS by my GP 10years ago he basically said it couldn't be treated and would probably resolve its self in a few months.

so i just carried on. I don't seem to have aches and pains that some of you experience. However in the past year i decided i was going to get fit but what i noticed was that i would have a couple of good exercise weeks and then i would get a cold or headache or various other minor ailments. This would interfere with my exercise regime and therefore i have struggled to get any proper routine or momentum. reading these posts i now realise this is probably due to my CFS.

Anyway i'm lucky i can still go to work but on my days off i'm exhausted. If i go out for the day with my hubby we cant go far or for to long a period of time as i become so drained. If i stay at home i can sleep most of the day away. He says it's like living on his own.

as i said i have just let this go on as i cant find anyone willing to listen or help. I went to my doctor again last year as i was getting married and i didn't want to ruin our honeymoon by sleeping through most of it which is basically what i do when we go any where hot. This doctor just told me that some people need more sleep than others.

i feel so alone sometimes as people don't take it seriously, and it scares me that this will be me for the rest of my life but i really dont know what else to do.

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CHIBILOKI88's Photo CHIBILOKI88 Posts: 202
4/7/10 12:53 A

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fibromyalgia emoticon

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CHIBILOKI88's Photo CHIBILOKI88 Posts: 202
3/30/10 10:43 P

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i ran the gambit of tests to try to figure out why im so tired all the time. after about 2/3 a year of tests with nothing turning up, i was diagnosed with fibromyalgia. i do have fibromyalgia, but theres still a part of me that thinks my fatigue is far too severe to be blamed solely on it. oh well emoticon

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JENNIEJA's Photo JENNIEJA Posts: 132
3/24/10 11:01 A

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Hello everyone. Has anyone used biorhythms to plot activities on good days. Take a look at www.whitestranger.com download the free version and add your D.O.B. Use the information on the graph to find days that will be better than others so you can do things with your family. Obviously you still have to manage your health and pain but it works. I have some pain but my problem is CFS. If I'm having a rough few days, my husband looks at my biorhythms and says something like, 'yep, got a few rough days ahead so lets not do this and lets do this instead.' And on good days we take full advantage and go for walks and even indulge in interval training. Take a look and see what you you think. :) www.whitestranger.com

---Date ---- Weight
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12/03/10 ~ 11 st 3
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In Jan 2010 my dress size was 16 and I am now a size 8 with just 6lb to lose.

Short term goals
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I wish everyone success in all their endeavours.


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BLEBJO's Photo BLEBJO Posts: 963
2/20/10 4:10 A

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Long story short: I've been constantly tired and felt fatigued for as long as I can remember. Started checking into things more in 2005, when nothing I did worked. Fixed my low iron levels, figured out early in 2009 that I have celiacs disease, and then finally in July 2009 I was diagnosed with Chronic Fatigue Syndrome. Most likely I've had CFS since at least age 10, and I'm now 27.

I also have asthma and allergies, but that is well managed with medication.

The symptoms I get are many, but what bothers me the most is constant tiredness, disrupted sleeping patterns, chronic pain in all muscles and dizziness. The sleep pattern is regulated by melatonin, which I take twice a week. Was on it every night for two weeks before cutting down to two nights a week.

Here in Norway there are no medications that are approved to try and treat CFS. Therefore the only "treatment" we have is psycho therapy and physio therapy. I see a physio therapist twice a month, where I have both manual physio and do exercises on apparatus (arms, legs, ball and elliptical). In addition to that I do Pilates at home. Starting out gently and adding more exercises when I feel my body can handle it. Trying to walk a little every day too.

4HCLUB Posts: 9
12/30/09 6:29 P

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I have a confirmed diagnosis of both Chronic Fatigue Syndrome (4 yrs diagnosed) and Fibromyalgia (2 yrs diagnosed). My CFS started with EBV which I had for longer then they expected and then the diagnosis changed to CFS. Both my husband I and have CFS. Sometimes our flares are exactly the opposite as each other and other times we are both fatigued at the same time.

I also have tremors down the left side of my body and ultimately had a seizure. My neurologist said it was because I wasn't getting enough recuperative sleep. He diagnosed me with a sleeping disorder called Periodic Limb Movement Disorder. Basically, the doctor told me, it's like sleepwalking without getting out of the bed. We also believe that Cymbalta may have contributed to the seizure, so I am not allowed to take Cymbalta or Savella.

I just found out recently that I have asthma. Yeah, that lead to a lot of questions on why it wasn't caught sooner and how long I have had it. This past July, after 9 years doctor hopping and trying to figure out why I had Chronic Pelvic Pain, I was diagnosed Adenomyosis and the doctor did a partial hysterectomy. I was previously diagnosed with Pelvic Floor Dysfunction and Vulvodynia. However, since they took those parts, I haven't had the pelvic pain.

My life lines so far have been Lyrica and Low Dose Naltrexone. And as much as I am exercising and eating right, I am not losing a darn bit of weight. If anything, I am gaining it or staying the same. I see my Fibromyalgia doctor on the 6th of January to see about reducing the Lyrica in order for me to lose the weight.

I am a full time college student, full time mom of a 3 year old, 15 month old and 31 year old. LOL I go to school online to reduce my stress. This way I can get my degree while being forced to stay home due to a medically fragile 15 month old. Hubby is also a full time student. Thank God for his VA pension and the 9/11 Bill that went through... that's what keeps us afloat.

I see Dr. Mark Pelligrino for both the CFS and FM. He has really gotten me to a great activity level. However, I still have to be careful not to over do it or I end up having a fatigue flare.

I highly recommend that anyone with CFS or FM talk to their doctor about Low Dose Naltrexone. It has reduced my fatigue in a major way and has given me enough energy to start exercising. And, if you have any questions about, please don't hesitate to email me. It isn't expensive, only $35 for the month... not copay, total cost. The catch is, you have to find a compounding pharmacist, because they have to make the medication for you.

I hope you all are able to manage the fatigue issues. I know sometimes it is a struggle for me... especially after an event like Christmas.

BTW, for some reason I like to write books when I reply... LOL

Heather

Edited by: 4HCLUB at: 12/30/2009 (19:16)
CARRIE535's Photo CARRIE535 Posts: 128
12/23/09 3:16 P

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I have myasthenia gravis. It's an autoimmune disorder similar to MS, except my body attacks the area between the nerve and muscle fiber. I have a lot of fatigue, some blurred vision. My muscles fatigue very rapidly when I do anything. Especially my thighs. I've had symptoms off and on since 2003, but didn't get a diagnosis until a few months ago. I have put on a lot of weight, and exercise is difficult, especially with trying to work. I've filed for disability and am waiting to hear back.

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MADCATTRINA's Photo MADCATTRINA Posts: 519
12/4/09 10:16 P

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Take a look at drmyhill.uk.co Fatigue heading
She has a lot to say about mitocondrial dysfunction and does a nice job of explaining the symptoms. Actually her entire site is interesting but the fatigue heading in particular. I have been diagnosis with fibromyalgia but most of my symptoms are CFS. My ND addressed underlying dietary and hormone imbalance. The fibro and fog are pretty much under control. Fatigue is still very present and restricts nearly everything I do.

MADCATTRINA's Photo MADCATTRINA Posts: 519
12/4/09 10:09 P

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Yup! Big time. I have been sick for three years following a bout of what I believe to be EBV March 2007. I just never got better. I no longer work or drive or socialize. The pain floats all around and will stay in one location pretty much for several days to once my neck locked up for four months. Coulnd't turn my head right and going to the chiro left me with horrible burning sensation so I didn't do that again. I have had a sore throat and ear ache on the right side for three years. No one seems particularly impressed with that except me. I can get nervous and run a low grade fever every time. Sometimes I don't even have to be nervous. I talked with the naturopath (after the allopaths (MDs)wouldn't discuss the idea) about the possibility that this may be a lingering virus. He is gave me a product called Virocon. I have been very ill over the holidays and need to stabalize myself before adding in new meds so I don't know if it works. What do you think of the XMRV news? I did the hoky poky (and then had to go to bed for a bit emoticon )because I have always felt that my problem was viral but ND and MD's say Fibro and Chronic Fatigue are too intertwined or they are the same disease. I disagree strongly. Your whole life huh? You are a strong woman. I don't knwo how come I go on now.

REVKARENFAY's Photo REVKARENFAY Posts: 107
9/21/09 7:36 A

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I, too, have suffered with fatigue, mental fogginess, and being seen as making this all up! It sounds like I'm better than some of you.

My father had mono twice, right before I was born and right after. I think I've had chronic EBV all my life. I have tested positive for EBV but so do 95% of all adults. None of the other test show anything--no to lupus, MS, Lyme's, etc., etc., etc.

My biggest problem right now is inflammation. One day it's in one joint and another day it will be somewhere else. We did a shopping day on Saturday, trying to get as many things done in the 'big city' as possible in order to save money and gas. I ended up overdoing it, of course. I was walking through Wal-mart when sharp pains shot up my heel. The pain turned out to be coming from my ankle from inflammation there.

Do any of you have this migrating inflammation with your CFIDS?



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hi everyone... i have had a long history of being tired. i had mono at 16 and was in bed for 9 weeks... i did bounce back that time and had good energy (except when i was depressed) until i was 24 and got mono again... that time i was in bed for 3 months and never recovered... it took my dr two years to tenatively diagnose me with chronic fatigue... all my bloodwork always comes back fine and normal... thank goodness my dr realizes that there is something "wrong" with me... he still periodically checks for other things though... couple years ago he had my heart checked since i was having dizzy/fainting spells, also had a sleep study... that showed i have mild sleep apnea, not enough to use a cpap, but i also twitch constantly during the night which wakes me up... not just my legs, but my whole body... i wake up like 40+ times an hour... i also suffer from insomnia and have my entire life... so not only am i always exhausted, but then i can't fall asleep, stay asleep or get good sleep... i take ambien at night to sleep... i take celexa for depression/anxiety... my oldest son was 4 when my normal life stopped... my 2 youngest kids have never seen me with energy... fortunately i have an amazing husband who realizes what obstacles i face in life and doesn't judge... its been 9 years since i last had mono, 7 years since diagnosed with CFS... i have short term memory loss, i mix up my words or can't think of words... i get alot of headaches... i can barely exercise, because then i crash afterwards... i say that i'm in remission or having relapses... i no longer can work or go to college full-time and probably won't ever be able too... i take naps whenever i can and require about 12-15 hours of sleep to be semi-functional... at this point i have 3-4 good days a week, which is a huge step from where i was... i get tired of being labeled as lazy though... i'm glad to see there is a group that i fit into and can understand my life...

Marlee in Oregon
Orange Alpha Tiger ~ BLC16

"Be not afraid of going slowly, be afraid of standing still. " Japanese Proverb"
When you are down on your back, if you can look up, you can get up." Les Brown



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6/14/09 8:11 A

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Has anyone else here been assessed for a mitochondrial disorder?

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6/13/09 11:36 A

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Good for you, C-A!

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6/13/09 6:18 A

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I got diagnoised with CFS about 9 years ago. Had to change my doctor, luckly found one who's wife is a specialist in CFS. Apparently I had been suffering since I was 16 but didn't realise it. Was bed bound for 3 years more or less and now am a wheelchair user. Went on a eight week course to learn how to live with CFS. According to them I had to do something for 10 min then rest for half an hour. With kids and a partner, who are they kidding. When do you live? So now I pace myself and I do loads of things with regular breaks in between. I'm always in pain, always tired, but I would be that if I stayed in bed so I zoom around in my wheelchair and get on with it. I have the problem of having insomnia with my CFS so I get about 2 hours of broken sleep a night but I've learnt how not to get stressed with it and just enjoy the feeling of relaxing. I'm now training as an Advocate for people with disabilites, going on a board to manage and run a Centre for Independent Living in York, joined Partners in Policymaking and taking a course with them and I'm involved with inclusion and equality issue. I also have a 5 year old with spina bifida and a daughter who is at college. And my oldest and his girlfriend are going to make me a grandmother in October, Cheers for that son!!! My doctor now rolls his eyes when he sees me because he thinks I don't want to get better because I won't rest every ten minutes, but I look at it that I was in bed for three years and I don't want to waste any more of my life on the off chance the CFS will go away. emoticon

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LOVINLIFER72 Posts: 48
6/8/09 10:53 A

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A site you could use to look up adrenal fatigue is www.cushings-help.com The people there are very kind and helpful as well... My sister has cushings, but most people there also have other things, too, with the cushings. There is also a section regarding thyroid issues, etc...

I am not sure where you live, but another possibility that causes brain fog and fatigue is Lyme's Disease... You'd need a Western Blot test as they are more sensitive... I will forwarn you that there are regions/ doctors who don't believe it exists, but it does... and there is treatment... I know I was trying to figure out my mess for a while and it helped to read, read, read... I also found the Mayo clinic site helpful as well as Wrong Diagnosis (That helped me to see what it could be and then read up on all that...)

Good luck to you!!

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6/8/09 9:12 A

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Malisa1: I don't know what to tell you about a diagnosis, but don't let anyone tell you that you're not feeling what you are. Fatigue and mental fuzziness are real symptoms of many conditions. If your present doctor isn't paying attention to you, get another opinion (and another, if necessary). In the meantime, you KNOW it can't hurt to develop and live a healthy lifestyle, which will lead to weight loss and probably some degree of increased energy.

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MALISA1's Photo MALISA1 Posts: 159
6/7/09 2:33 P

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I am so glad I found this team. I have been dealing with this sleepy no energy foggy life for a long time. About 12 years ago a doctor said I might have CFS but there is no cure for it. So at that time I've been trying to lose weight. Weight loss has only gotten worse. Since then I have gained alot of weight. I've tried diet pills and weight loss clinic"s It seemed like I could lose 30 then gain it back and then some. I was feeling my best when I was pregnant with my 2 children, Now I just want to sleep and it's a struggle for me to do anything I really just want to sleep. I feel bad for my children because I get irritated easily because they want to do things continuously. I have seen doctors and they say to just lose weight Definitely that is something I have to do. I just seen something on tv about adrenal fatigue. Where do I start to get out of this pit? What kind of doctor do I see? I would greatly appreciate any thoughts on these questions. I am so sick and tried of people thinking I'm just lazy. I know inside I am not.

Edited by: MALISA1 at: 6/7/2009 (14:34)
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4/30/09 10:03 P

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I currently do not have a diagnosis, but I think I may have CFS. My vitamin B levels, thyroid tests, and CBC came back normal. Not sure if that affects possibility of CFS.

It's not about perfection, it's about sustainability!





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LOVINLIFER72 Posts: 48
4/13/09 3:36 P

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Here is how things have gone for me...

I would experience sleepiness off and on, but if I was working and on my feet I was fine. Then, I had my older two daughters 13 mos apart (not planned that way) and then I was just so exhausted all the time.

I went to my doctor and was told it's b/c I have young children. That kept me away a long time until I started to see that my friends were not affected the way I was.

So, I started going to doctors (over a period of 7 years) who would tell me I was depressed, narcoleptic, normal, crazy, anemic, lazy, and not getting enough sleep.

It didn't matter that they were all told the same information... I was going to bed at 6 pm and sleeping through the night until 9am and then taking a nap at 11 am and again around 1:30 only to go back to bed at 6 pm. On the weekends I didn't even get up b/c husband took over and I slept. I always felt better when I was pregnant so it was easy to have 2 more daughters...

I had only tried two medicines until my newest doctor. Ambien and an anti-anxiety med that I took twice and it made me not care about a thing. I had a sleep study that no doctor would treat me as the sleep study was not done "correctly". And, my insurance refused to pay for another one as "I should have known that I was supposed to stay the following day for them to measure my daytime sleepiness." (I could barely get myself there and home! How was I supposed to know what I was supposed to tell them to do??) Anyhow, I stopped going to doctors after the anemia/crazy doctor. It was my chiropractor of all people who stood by me and encouraged me to try his doctor in MN.

I went to him and at the same time my current doctor called to say he would take on my case as he only takes on difficult ones. So, even though MN doctor was going to help and he is a naturopath, I went with the endocrinologist with my chiropractor's encouragement...did you follow that? Anyhow, I have been diagnosed hypothyroid, immune system issues, autoimmune disease started from mono, epstein barr, lyme's...

It's a slow fix and one problem at a time, but I have hope. I have seen some dark times and I have a husband who has stood by me and walked this walk with me.

Many people do not understand the fog, fatigue, sleepiness, and pain that we have on a daily basis. People stopped being my friend as I could barely manage my own life much less anything more. I felt like I was dying and I never listened to the people saying I was crazy. I was still laughing and finding the good in life, so how could I be depressed? My chiropractor listened with thoughtfulness even though he could not help me as a doctor. He said that I am not depressed and about the happiest person he had ever met. So, I kept going along to be a good mom and maintain whatever relationship I could with my husband.

There were certainly days I didn't want to hang on and I prayed seriously a whole summer for God to just take me as it was too hard to live. Daily I was reminded by Him that I have a purpose and that my health is part of what he needs me to endure.

Now, I have some energy...not tons, but it feels like a ton to me b/c of where I was. I have good days and I have bad days... Easter was a bad day, but I was able to watch kids open baskets...I slept the rest.

If anyone else can use my diagnosis to help themselves, that would be great! I actually suspected Lyme's and hypothyroid, but the doctors refused to test me. When I saw my endo, he stated that I self diagnosed and it was a shame that none of the doctors would listen and they criticized me for researching. He also said it was great that I went to other doctors to help myself. He also said I was on the right track with feeling better with pregnancy...that was part of the autoimmune disease.

So, keep on searching for what is the underlying issue for you. I have read a ton and one place that really helped me was wrongdiagnosis.com b/c I could read up on my symptoms.

Feel free to e-mail me as well and if I can help you, I will.

May you find a moment to feel yourself today and forget this hell you are experiencing!

Lori






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CREATIVECHRYS's Photo CREATIVECHRYS Posts: 328
3/28/09 8:22 P

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I do not have a disgnosis yet. I am not sure where to go.
My GP says that i have bursitis in my hips and the orthopod that i saw says that i do not have enought arthritis for the pain i experience.
He wanted to do a CT scan but I was between jobs.
I am now just so tired that like brandnewrose, I go to work and go home and rest.
Thank god I live alone and can rest.

It is embarrassing that at 60 I am in worse shope than my 88 year old dad.

Lander, WY * A Quaker & Love Mountains ! !

"The groves were God's first temples."
- William C. Bryant


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BRANDNEWROSE's Photo BRANDNEWROSE Posts: 11
3/25/09 7:36 P

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Hi! I'm sooo glad I've found this group!!
Have been away from SP for a few months because of failing health. Had to give up work in October due to the Fatigue, although docs were still saying at that point(as for previous 3+ years)that there was nothing actually wrong with me. I can easily sleep 20 out of 24 hours and yet the pain in my back and shoulders just gets worse. If I can get up and out for a bit, it helps, but it is all about pacing myself. At last, my GP has finally referred me to the local CFS/ME clinic for diagonsis. Just to have someone say...Yes, there is something wrong with you...would be fantastic after years of just feeling like you're half a human! For the last 8 years I have held down a full time job by doing nothing else but working and sleeping, and now I can't even manage that, but that is no life, and being told that there is nothing wrong with you is an insult to your intelligence!

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KIMBEROU812's Photo KIMBEROU812 Posts: 2,808
2/6/09 4:07 P

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Hi, I am new to this group and just wanted to share my story. I got a diagnosis of adrenal fatigue in 2001 but was really bad in 98-99-00. My life had almost become non-functioning. I was always wiped out and adveraged 12-14 hrs. of sleep a day. I would fall asleep so hard that I was tough to wake and wouldn't hear anything. My husband explained it was like me coming out of a fog when I did wake up. I once fell asleep on the floor in a stretching position after a run (yes, I continuted to push) and slept in that position for 4.5hrs. until my kids came home from school and woke me up. I could barely function, shower get ready etc. I could blow dry my hair and then have to rest. When i would over do it I was in bed for 3-4 days at a time.

I went through 5 Dr.s running sleep test, thyroid tests, etc. etc. They put me on anti-depressants and told me to rest more. They'd put me on antibiotics because I ran a low grade fever all the time. I too had migraines and cronic headaches. Body aches and people thought I was dying of cancer or something. They had diagnosed me with Cronic Fatigue Syndrome and the last one I saw told me to sign up for disability and learn to live this way, because I'd probably never get better.

I finally found my Dr. through a Compounding Pharmacy that referred him, and he ran a saliva adrenal function test and hormone tests. He is an MD. who practice integrated medicine and holistic applications. My adrenal glands had almost shut down (borderline addison's disease) I was no longer producing pregnonolone hormones which tell the brain to produce adrenaline.

It has been several years - I got my proper diagnosis in 2001 and I take supplements for adrenal function and pregnonolone cream and we contantly monitor. I went on the adrenal diet, much like south beach, cut out all high glycemic foods etc.and work closely with his nutritionist and my energy level is great now. I do still occasionally have dips, when I overdo it and I have had to learn patience and build up for any exercise. But I workout 4-5 days a week and trained for a Marathon (a life long dream) last summer.

After years of feeling like I must be loosing my mind and maybe it's all in my head, but KNOWING something was wrong with me, I finally got my life back. I just want to offer some hope. I read though your post with tears in my eyes because I've been there and your stories are so familiar to mine. I know those years where hard, dark times for me and I empathy for you.

I'm not saying everyone on here has adrenal fatigue but if it's something you've never been tested for before it might be worth it. And if your seeing only Western Medicine regular Dr's they don't test for it. Even specialist I saw never tested my adrenals. I'm so glad this group is here and you know your not in it alone!!



Ability is what your capable of doing. Motivation determines what you do. Attitude determines how well you do it!


Kimber
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2/2/09 2:39 A

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Update on me... been awhile since I've been on SP because I've felt really horrible. I have now officially added Fibromyalgia to the DX list, which explains the combination of issues I've had and I'm pretty sure that I have chronic myofascial pain, but that is not officially dx'd yet. My official list now is "ideopathic hypersomnia with excessive daytime tiredness", fibromyalgia, migraines, endometriosis, allergies, chronic sinusitus/rhinitis, and ashtma. They all relate to the fibro (and probably CMP), which makes a lot more sense than the massive arbritrary issues. Aye! I want to be normal too. Before I hated not "feeling good" or being able to handle working out since I'd be thrown into being sick every time I did, but now even day to day stuff is next to impossible when I have flare ups.



Marianne

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1/30/09 5:54 A

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Thanks for posting...sorry I'm so late reading but I'm new to the team. I know all about falling to bits, LOL

I have Lyme Disease, which is currently in remission but I am having to deal with tendonitis, arthritis, cfs and fibromyalgia - all associated with the Lyme.

Unlike you, I am on medications. I go on and off antibiotics as needed but I am on some maintenance medications and though I've tried to go off of them, I get much worse without them.

I would be probably stay in bed all of the time if I didn't have my son. He's 2 so he's a handful anyway but he motivates me to get up and get things done.

Have a great weekend!
Monica

emoticon

TREACLE1983's Photo TREACLE1983 Posts: 50
1/4/09 12:50 P

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I was only diagnosed properly last year after years of hospital specialists and illnesses.

Here's the lovely list:
1: Joint deformity - had since birth but only just diagnosed???

2: Bursitis - Lovely blister type things inside my joints meaning I have an even lower immune system and constant infection.

3: Arthritis in my knee - Rheumatoid - lovely, just what i've always wanted.

4: Severe M.E - again apparently had since quite young and only just diagnosed.

5: Carpel tunnel syndrome

I think thats it. LOL. I am officially falling to bits...

But do you want to know something - I take no medications unless something really flares up - I take a lot of naps during the day and have planned my life round my illnesses - apart from being currently redundant I have managed to hold down a full time job.

I could quite happily stay in bed all day - I am in constant high level pain but have grown up with it and have known nothing else - I am told I have a high pain tolerance.

I strive each day to get up and out the house and to keep active - I don't let me illnesses rule my life but I do acknowledge that they are there and work around them.

Hope that is inspirational and of help to some of you.

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12/16/08 11:28 A

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Hi all, Im new here and was reading the post. I have been severely tired for about 10 years now since my first child was born. I have gained weight, lost energy, etc....Have been to so many doctors about this and have so many tests done but too have had the shrug off or basically been told I was just lazy. Which is not true at all. I went from a vital energetic women to someone who can sleep all day (if kids would allow). I feel for all of you and am so glad I found this group.

Edited by: ARIZONAAVON at: 12/16/2008 (11:48)
Channon

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10/1/08 2:58 P

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Kat, what type of anemic are you? I have a coworker who's wife was anemic with a B-12 deficiency. The problem is there are certain things that can impact vitamin absorbption and no amount of oral vitamins will fix. B-12 can be one of those and it can mimic MS in symptoms (tingly / falling asleep limbs and such). If you have that, the only way to get the B-12 is via injection, no way around it. I did see an episode on mystery dx on Discovery Health after I had heard of my coworker's wife and on there it got into the detail of something w/ the amino acids and a certain part of your stomach. I guess it's common after a stomach surgery like gastric bypass, but very uncommon due to natural organ setup type reasons, as was the case w/ the coworker's wife, which made the DX harder. Perhaps the same with you?

As for me I now take Provigil 200mg 2x a day and the Ritalin ER (ext release) 2x a day. I'm still having a hard time and I also have a ton of pain which others are suggesting it may be Fibromyalgia and Chronic Myofacial Pain. When I looked at the symptoms for both (which are commonly associated together) I was shocked. Maybe this is the true underlying cause to the fatigue. It describes me to a T and ideopathic hypersomnia to me was a cop out for not finding the root cause, though it's true I sleep a lot and am still tired, there's something else behind it. I think this might be it. I'm keeping a journal now with my pain stuff and medical history, anything I can think of that seemed goofy or arbitrary and really is probably neurologically related. How many of you out there have either of these? I know I've seen a few.

Oh and sorry I've been major absent, to say I've been tired and not on SP would be an understatement. Glad to have so many new comers. Welcome!




Marianne

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URBANFOOL Posts: 2
9/27/08 9:59 P

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Suzanne, if it makes you feel better, they put me on Provigil, and my body outgrew it in about a week, so for that amount of money --it didn't last. I used "Get 6 free" coupons from my doctor for a while before I decided it just wasn't worth the hassle.

And hello, I'm new also. My CFS has been getting progressively worse and I need a trip to the doc soon. At the moment, I'm sleeping 14+ hours at night (going to bed at 7 or 8 in the eve) and then taking a 2-3 hour nap in the afternoon.

I can't say how painful it is.

Kelly

KAT19831's Photo KAT19831 Posts: 20
9/24/08 9:21 P

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Hey everyone..I just joined this team : ) I am glad to know that there are people out there experiencing what I am. I'm 24 and a single mom of two girls. I've always been depressed and tired all the time and dealt with anxiety as well. In the past few years, I've gone though a lot of stress-losing my mom, my husband walking out on us, having to drop out of school, etc. I have been on many different antidepressants but they make me more tired. In the past, all my blood work showed was that I'm anemic and I have low blood sugar. My children suffer because of this because I feel as if I don't have enough energy to even get out of bed. I have lost jobs because I can't focus and am too tired to even move and some of my managers and co workers have said I am just being lazy but I feel like something is wrong and I don't CHOOSE to fall asleep or be this tired. Even days when I get a good 7 or 8 hours of sleep, I am still tired. I have even almost fell asleep at the wheel which terrifies me. Also during the day, some time I feel a tingling sensation in my arms and legs and get extremely dizzy and my heart will skip beats. I have no insurance and have no money to see a doctor. I try to eat well and take vitamins but nothing seems to help.

Edited by: KAT19831 at: 9/24/2008 (21:25)
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MACGIRL730's Photo MACGIRL730 Posts: 18
8/23/08 4:02 P

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Hi Everyone! I am new to the Fatigue Support Group, but certainly not new to FATIGUE!! I suffer poor sleep problems also, according to my sleep studies (yes, more than one was done) I have sleep apnea, but cannot use the cpap machine, I am extremely claustophobic, I could not even finish the sleep test when there, they tried every cannula they could and I couldn't do it, I would have to rip the thing from my nose! I became very panicked, anxiety attack right there! So, that was the end of that.

They also found that I have very "interrupted sleep" and never get into a certain "wave" of sleep that is the restorative kind we all need to feel rested and when our bodies get to heal themselves. So, that also explains a lot.

My diagnoses are CFS and Fibromyalgia along with RA, OA, and many problems with my Cervical and Lumbar spine.

The fatigue simply hits me and I cannot do anything but lie down. I am slammed with it. I got a script for Provigil, I did not get it filled as it was not covered by my insurance and was around $300, which I could not afford a the time.

I am trying exercise and movement to combat the fatigue. So far I win out on a 50-50 basis.

My best wishes to you all in your search for relief from this awful fatigue! emoticon

Suzanne

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BEV832 Posts: 3
5/31/08 11:21 A

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Hi everyone! Like Basschica, I've had a MLST and got the same diagnosis (idiopathic hypersomnia with excessive daytime sleepiness) but one thing they did find was that I get very little REM sleep. That deep, restorative sleep we all need is rare for me. So now I take Allertec (Modafinil) and I am a new person. I am able to keep moving all day at normal speed instead of falling apart by 1 in the afternoon and then just dragging myself around in between naps.
My meds for depression cause fatigue as well, so I just accept that I need to take these new ones if I want to stay happy(ish) and awake. Good luck to everyone!

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OLGAINTX's Photo OLGAINTX Posts: 3,497
4/8/08 3:01 P

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Hi, all.

I want to share with you all, Guifenesine. I am not sure how to spell it, but it's the ingredient in Mucinex. It's not advertised for coughs, but it helps me very time. When I start coughing I take Mucinex and 2 days later, my cough is gone.

I think after we recover after a cold or flu, our mucus starts to drain and Guifenesine dries it up to stop you from coughing.

Good Luck.

Olga
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It maybe too late to go back and make a new start, but it's not too late to make a new ending.

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I eat to live. I don't live to eat.
CD2739573 Posts: 4,648
4/8/08 2:52 P

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Good luck with making it to bed by the time you are aiming for.

BASSCHICA's Photo BASSCHICA SparkPoints: (0)
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4/8/08 2:38 P

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yeah I had never had the "flu" proper before, but it was much different than other colds. I never really get fevers hardly ever and generally my symptoms creep up for a day or 2 before it's full blown. With the flu it was within a few hours of noticing just a little coughing. Then once the fever was under control and things calming down after several days, I couldn't get the cough to go away. It really felt like pneumonia to me. I was chugging cough syrup like no tomorrow.

I am very tired today too. I wanted a nap for lunch but didn't have the time. I am trying to eat slowly and put things down between bites, so my sandwhich and banana took quite awhile. One of my April goals is to get to bed by midnight at the latest and goal 11pm.


Marianne

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