I feel like CFS is robbing my life

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Jasmine Grace
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Date Joined Jun 2013
Total Posts : 815
   Posted 7/24/2013 6:20 AM (GMT -7)   
I have learned to manage fibromyalgia to some extent. But I can't seem to get a grip on CFS. I can't do anything, I don't have the energy to study or drive or do much exercise or even play the piano much - and I love to do all those things! I want to be a doctor or an Occupational Therapist and travel the world and start my own rehab centre but I can barely get out of bed. I normally try not to get down about things but today I'm just feeling so depressed. It doesn't help that I'm in a lot of pain today. I just keep crying and crying because I feel like my health is robbing me of the opportunities I should have in life.

I just want to get better. At least to know why I'm even sick. I want to become a doctor and find a cure but I'm afraid I may be too sick to ever become a doctor to do so.

Just fed up!! Stupid CFS!
Age: 18
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, GERD, allergies, dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/24/2013 8:06 AM (GMT -7)   
You can do it Jasmine...you are strong and wise and young...People with CFS have a chance of getting better when they are young.

You will be a doctor, we are all counting on you, this is a blip, in a few days you will back to your positive self and smiling again...giving us all advice like you do on the fibro forum :o)

Im counting on you to become a CFS doctor and to write a book and find a cure...I will definitely be the one to buy that book first

Not even sure I have CFS but looking likely, I have decided from this day forward I am going to learn to be positive and live my life the best I can...I know people who have had CFS and manage it or have got much better from it

There is a support group near me in the UK for fibro and CFS...they do yoga and once a month outings, I am looking forward to joining this. Is there anything like this near you in Oz?

Also a good book I found is Fibromyalgia - your healing Guide by Christine Craggs - Hinton, she is a UK writer...she had both Fibro and CFS and gives loads of tips and meds which help both conditions...you will be like her...she went from totally bedbound to walking 3 miles a day

Hope this helps a bit xx
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 7/24/2013 8:36 AM (GMT -7)   
Thanks Wackers :)

We can both be positive together!

I know there is a fibro support group but I'll have to look for it first

I might look for that book

Feeling a bit better now (especially after cuddling the cat for an hour)
Age: 18
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, GERD, allergies, dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/24/2013 9:03 AM (GMT -7)   
cats are great for that arent they...I have two and my ginger one, Boris, is so affectionate...like a giant teddy bear..he just seems to know when things are bad.

http://www.amazon.co.uk/Fibromyalgia-Treatment-Guide-Christine-Craggs-Hinton/dp/1847092446/ref=sr_1_1?ie=UTF8&qid=1374681795&sr=8-1&keywords=fibromyalgia+your+treatment+guide
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/25/2013 1:52 AM (GMT -7)   
Jasmine, I feel so bad for you, I hope you are doing better. We all have days like this but just be reminded they do pass & we pick ourselves up & go forward. I think CFS is harder to deal with than Fibro, the fatigue just keeps me down. I am having a good week this week & hope it continues. I have been drinking protein shakes every day & it seems to be helping me not be so tired. I have been reading alot about CoQ10 being low in CFS sufferers so I take that & feel somewhat better.

As far as school goes it may take you longer then what you thought it would but you can still do it. Remember, a number of the researchers for CFS are patients themselves. They have been able to go to school & begin their research, & so can you. It is not impossible but don't expect to not have difficulties, expect it to take twice as long. Keep your spirits up & be happy with where yoiu are at each stage of your journey. I know you can do it. You are strong, take care & let these days like this just fall by the wayside. We all have to mourn sometimes for our old lives & how hard it is. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 7/25/2013 2:03 AM (GMT -7)   
Thanks Denise :)

I'm planning to ask my doctor about taking coenzyme Q10.
Age: 18
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, GERD, allergies, dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

Wackers34
Veteran Member


Date Joined Apr 2013
Total Posts : 694
   Posted 7/25/2013 12:28 PM (GMT -7)   
i take coenzyme 10...i think it does help a bit

Jewelery Lady, I might try some of these protein drinks...are there a particular brand you can recommend?
Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 7/25/2013 7:49 PM (GMT -7)   
Jasmine, My granddaughter had mono when when she was in her early teens and it took her so long to recover that the doctor said she probably had CFS. She had all the symptoms for several years, but, being young was able to recover.

It happens a lot in young people. I believe you have a good chance of getting well. She is now 27 and graduated from college with a master's degree two years ago. She got married last Dec. and has a full time job. She and her husband have an active life together. There is lots of hope for you.

You'll make a wonderful doctor or anything else you decide to become. Hugs, Memaw
Chronic Fatigue Syndrome, Fibromyalgia, OA, Hypothyroidism, Diabetes Type 2, IBS, Neuropathy, Ocular Migraines.

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 7/25/2013 8:29 PM (GMT -7)   
Wackers, thanks for the confirmation that Q10 is something worth checking out.

Memaw, thank you so much! I need that hope :)
Age: 18
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, GERD, allergies, dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/25/2013 9:21 PM (GMT -7)   
Wackers, I get mine from the health food store & use the whey protein that is in the bulk bins. I use it in milk & add coffee creamers for flavorings. I am surprised at how much better I feel since I started them. Don't know why either so I will have to do some reading. My daughter uses Muscle Milk & loves it. She is the one who suggested I give it a try as it helps her auto immune diseases. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

olivia l
New Member


Date Joined Jul 2013
Total Posts : 11
   Posted 7/26/2013 12:05 PM (GMT -7)   
Hello to all! I am about to see my ninth physician in September at Ochsner's in New Orleans. I am also married to a physician, Internal Medicine, who can attest to the struggles with this disease. We are having to relocate to live closer to family so they can help us with our everyday lives. We have two young daughters. I thank God for my supportive husband and family. We are convinced the antivirals are the key to maintaining somewhat of a functioning life. I will not give up until we find a physician to diagnose and treat me. I read numerous articles about Dr. Dan Peterson and his cutting edge approach on ME/CFS. He is in Nevada and I am trying to get an appointment with him. At this point I am desperate to try antivirals. I don't want my husband to treat me in fear of something going wrong and him blaming himself. My soul is free and happy but I cannot get this earthly body to function. Don't get me wrong, I have days where I cry too. I have EBV, CMV, Viral meningitis, and thyroiditis. My husband has tried every natural product, herbal teas, etc. on me and nothing works. It is so absurd that so many people have this disease and no treatment yet. I also ran across some published autopsy reports about ME/CFS patients and oh my...the tissues in the heart, muscles, organs, brain, etc all had severe abnormalities. All pointing to viral invasion. I have learned to listen to my body. If I cannot get up, I rest. If not I pay for it! My husband even bought me an expensive EMS machine to help with muscle atrophy...HA! I cannot hardly move after using it on the lowest settings. Hang in there!! Also look up Dr. Peterson's article about Vistide.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 7/30/2013 1:12 PM (GMT -7)   
Still hard to believe how many of us are out there looking for the origin to our condition.  It is so hard to treat something so evasive, most treatments need something to target in order to be effective, otherwise you are throwing darts.  I had a viral onset to my CFS almost 3 years ago, just a benign bout with the flu (so I thought).  I even was referred to the Mayo Clinic here in MN, and they couldn't find anything specific to treat, other than the fact I have EBV in my system and a slight chiari malformation at the base of my skull.....but in their opinion has nothing to do with my condition. Not really knowing what has happened is one of the most frustrating aspects of this.  You mentioned visiting your 9th doctor, which is story similar to many others.  I can only tell you that when you find a doctor who has an understanding of CFS, use them as a resource.  I had the experiences of being told a few times that there is nothing serious going on in my body, so don't feel too bad.  Yeah, right.  I understand I don't have cancer, but yet feel so tired all the time that it affects every other aspect of my life.  Being young will tilt the odds in your favor, believe it that!

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 7/30/2013 7:40 PM (GMT -7)   
Minnesota, I know how you feel, I am so frustrated with being sick all of the time & not knowing why. I have been feeling quite a bit better for about a week & now I am in the toilet so to speak. The why probably has something to do with the weather change but WHY???? There just seems to be no end to this illness, will they ever find anything that is responsible, is it even possible? I am sorry I am just venting but I want to fe well. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 7/31/2013 1:15 PM (GMT -7)   
I think there is some hope to cling to when you see what medical research is doing these days.  Genetic decoding for instance is a concept that even 5 years ago was science fiction.  Now we are closer to looking at a genetic profile to see what a person is suseptible to.  Or drugs/medications.  Again, things are happening at a faster pace in this area than ever before.  For me, I hope for some type of treatment to just improve symptoms if nothing else.  When I started taking Vyvanse I went from 65% to 75% pre illness functioning, and that marginal difference meant a lot to me, like still being able to work.  Without it, I would only be able to work PT at best.  10 years ago Vyvance wasn't available, so that makes me think in the next 5-10 years something should come out to at least help.  Fingers crossed.

olivia l
New Member


Date Joined Jul 2013
Total Posts : 11
   Posted 7/31/2013 1:33 PM (GMT -7)   
I am on my fourth day of valtrex. I feel like I have the flu with extreme weakness. I sure hope I don't have months of this. My kids are sick of me not being able to get up to do anything. Thank goodness school starts in two weeks. I would be happy with just half of the energy I had before ME. I went to the lab today to order Dr. Lerner's suggested labs and the lab sent me home and told me they would call me back when they have all the necessary codes for insurance. Ha! Why are western trained doctors so uninformed about ME?

Deniclair
New Member


Date Joined Aug 2013
Total Posts : 7
   Posted 8/11/2013 7:50 AM (GMT -7)   
Olivia,
I'll be curious to see hoe the Valtrex works for you, thinking about talking to my doctor about it. The US is so backward about CFS,.

Jasmine, don't worry about having a good cry, sometimes we all have to let it out, I've just been through the worst week in over 10 years. Started a new job about 6 weeks ago, and came down with the worst brain fog ever, could hardly talk, felt so awkward and stupid. Called my doc who, couldn't see me but offered to call in an antibiotic! Really, you would think she would have understood:(. Had a good cry on Friday after calling in sick. Then I could begin to pick myself up and start over with this tiresome battle.

Hang in there, occupational therapy needs people who understand this disorder. I am an occupational therapist assistant. Have been working 10 years with this. Full time, some times I can barely make home just to crawl in bed. Then there have been many times where I feel I have made a difference.
Take each day at a time, hoping this board will give a good outlet for my emotions to help me not show my emotions to people who don't care or understand

olivia l
New Member


Date Joined Jul 2013
Total Posts : 11
   Posted 8/11/2013 9:19 AM (GMT -7)   
Hi Deniclare,
Flu like symptoms are getting better. Yesterday had more energy. I actually helped cook dinner. I have started with some neuropathy pain in one leg, one hip, and spot on my head. I have no doubt it is from the valtrex stopping the replication of the viruses. PLEASE find a doctor to try dr lerners protocol. We also found a coinfection...mycoplasma. Try not to take it out on the physicians here in the US. I can assure you they do not know about this treatment. We got tired of waiting for a physician to treat me so my husband is doing everything. We ran all the tests and made an appointment with dr Lerner in October. Hopefully we are on the right tract. I showed dr lerners protocol to my regular physician here in town and he cannot wait to start his patients on it. My lasts labs proved why I feel so bad. Eppstein Barr, cytomegalovirus, and mycoplasma titers were all way over normal limits. Please research dr lerners experience and bring all of his information to your physician. Dr Lerner has all of the trials documented. His research makes total sense. We have tried everything!

Deniclair
New Member


Date Joined Aug 2013
Total Posts : 7
   Posted 8/12/2013 12:36 AM (GMT -7)   
Thanks Olivia, I know that I have the EBV virus. I will get the info and take it with. I was just really frustrated because the brain fog was so bad, I knew I was having a hard time communicating.
Thanks for the heads up, to check my emotions at the Doctor, it does no good to get them frustrated at you.

She has been pretty good with me so far over the last two years.

'eye'
New Member


Date Joined Jul 2013
Total Posts : 6
   Posted 8/27/2013 4:47 PM (GMT -7)   
jasmine, what helped me so mucn ,n I am sick 21 years was journaling my everything.... it did take me two years in bed, a host of vitamin drips and supplements just for me to walk again, but I have always been a write, jouraler... I realized I could not/should not think or make decisions when I was overtired. I could no longer afford to over emote, drained me,i just came out of a crash because my Service dog died suddenlt 21 days ago, he was not ill.my spiritual life sustains me. I set boundaries for myself and keep them. as I have suggested,you are young enough to get a lot back....perhaps your dreams may realize in a different form or manner than you had hoped but the universe will always rise to meet you when we only do the best we can. today I can study and read voraciously again, not always.my memory is almost back. I can do 20 miin on treadmill 3x week, this is miraculous for me. I was 35 when it all hit.check out JOHN OF GOD,BRAZIL.. IT IS EASY AND INEXPENSIVE ENOUGH....I am doing it and feel like I am truly receiving some help. I keep you in my prayers always eye.
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