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Chronic Fatigue Syndrome
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Posted 4/1/2009 3:39 PM (GMT 0)
 hi

    I was diagnosed with me/cfs about two years ago but it is believed i,ve suffered 16 years now. I also have osteoarthritis in all my major joints and possible a condition called mitrocondrial myopathy which effect the energy levels in the musles. A resent blood test for my high blood pressure has reveiled that my kidneys are not working as there should. I get out and about only by using mobility scooters but over the winter i,ve had to stay in more coz of the wet weather and also due to the cfs/me i can not maintain my temperature  so it has been to cold for me to go out. But i found my self isolated coz no body calls apart from my daughter and two friends that call once aweek but because i,m feeling very low due to being isolated there don,t understand it. Am i being selfish or do others suffer low moods due to being isolated and if you do what do you do to cope  sad

Posted 4/1/2009 8:41 PM (GMT 0)
Hi Jacki, That is one of my biggest problems. I get so isolated & alone during the winter months but I am also usually very sick & so I isolate myself. I don't even have the energy to talk on the phone & if someone did come over I wouldn't really feel like visiting too long. I live in my Pj's, bathrobe & slippers. On my good days I do try to get out of the house. My daughter will come get me & we will go window shopping & go to thrift stores.

Some things I have found: B12 5mg sublingual-this is dissolved under the tongue & is usable by the body withing 15 minutes per a study done, it will also stay in the system for 24 hours so you only have to take one. My energy levels have gone way up & I am not so sleepy. Vit. D is essential & is a growing epidemic & can cause all kinds of problems like lake of energy & fatigue, it can also cause muscle pain. I take one 1000 IU pill each day. B1 & B2 help with pain so I take a B Complex as well. Talk to your Dr before taking anything but this may help you some. I know the B 12 works because I took it one night instead of my Melatonin 5mg sublingual & then couldn't sleep & I was wide awake. I figured it out the next day when i found my Melatonin in my bathrobe pocket & the B12 that had been laying by the computer was gone. LOL.

Go to the Fibromyalgia Forum & click on the second thread Fibro 101- under that read the "Spoon Theory". It really helps with understanding the need to pace ourselves when we have a chronic illness that saps our energy. I love my "bed Buddy" for pain & warmth. You put it in the microwave to heat & it then has good moist heat to warm up those hands & feet. If you don't have one, just fill a sock with some rice & tie off the end, microwave it 1-3 minutes depending on your microwave & enjoy. Better then a bag of pop corn LOL!!!

Come & post often & I will be here to help you through those bad days & share your good days. I hope you feel better soon. Hugs, Denise
Posted 4/2/2009 9:55 PM (GMT 0)
HI Denise

            Thank you for your message its great to know others feel the same as me and i,m not totally gone mad YET lol. I,ve had a better day today with the weather being so nice I got my scooter out rang my daughter up and went shopping it was great. I even saw some friends I havent seen for a while we had a good natter. Its nice to know other people do exsist and i am not alone. I have tried various b vits, d-vits and c-vits plus ormega oils,vega testing for allergies/asthma followed by a stricked yeast,dairy.wheat diet. Only thing that seemed to help was the diet with my allergies and asthma, but it didn,t take away the fatigue and muscle and joint pain. My doctor sent me to a me/cfs clinic where we learnt to pace ourselfs and how to avoid the boom /bust situation, that is doing to much one day then suffering the next day. We also learnt how to set realistic goals within our limitations. Its all been very helpfull but i,ve been very surprised at how slow its all been to acheive those goals and i,ve found it hard to accept my limmitations but we were warned this would happen          

    From what most of them were saying about there wifes/husbands I realised how lucky I am to have such a understanding husband apparently its very ware

     Some of your ills I have never heard of before such as holt-oram syndrome, TMJ what are these and how do there effect you? I like the bible quote at the bottom do you have a religion?

Posted 4/3/2009 6:29 PM (GMT 0)
Jackie, I just love those good days when I feel somewhat normal & get out of the house.  One of my main problems is I don't want to be home when I am feeling good & so my housework really has gone downhill, one of the many things I have learned not to worry about.  That clinic you went to sounds really interesting, it must have helped alot with pacing.  I have had to just plug through with trial & error.  Mostly error!!!  I live in a small town in Montana so there is nothing like that here.  It sure sounds like you have a good Doctor, so many have to deal with below average Doctors & get no help.  Someone said in a thread on the Fibro forum to always remember that in every graduating class of Doctors 1/2 of them are in the bottom half of their classes.  Good thing to remember but I too have a very good Doctor.

TMJ-has a big long name that i can't remember but it is a problem with the joint in my jaw.  It gets really painful & can cause my ear to hurt & my face to hurt.  For a long time my Doctor thought that it was some kind of an ear or sinus infection.  I am having a flare with it this week & my jaw pops when I am chewing & it really bugs me.  It is a problem that is associated with Fibro alot.

Holt-Oram Syndrome is a genetic disorder that is very rare so usually no one has heard of it even alot of Doctors.  There are only about 400 patients world wide.  It affects mostly the heart, & the arms.  I have symptoms of it in my hands & arms & a heart murmur.  My oldest daughter, Sarah, was born with holes in her heart & had several surgeries.  My daughter, Misty was born with arm & hand problems which required 13 surgeries before the age of 16.  Mistys' son, my grandson, Deylan, was born with a very bad heart & he has had 6  surgeries, 2 of them we had to take him to New York City for a new procedure that finally saved his life.  It was touch & go for about 5 years & that is when I ended up with Fibro & ME/CFS.  He is doing well now & his heart is stable.  He is 10 & has a pace maker, he is growing like a weed.

It is wonderful to have an understanding husband.  It helps so much & alleviates the guilt & sadness of being sick.  I felt so guilty at first because I couldn't work.

I am very religious & have a strong faith which gets me through.  We can not talk about religion on the forum though.  That is one of my favorite Bible quotes. 

It is so nice to meet you & I hope you have a good day.  Hugs, Denise

Posted 4/5/2009 6:47 PM (GMT 0)
HI Denise

            You,ve really been through the wars with yourself and your family. I bet you wondered at times how you,ve got throu it all. I,m glad your children are doing better now. I don,t know how I would have coped if my children had any serioue problems.

       For the biggest part of fifteen years I had a bad doctor he was always fogging me off with one excuse after another. But when I changed jobs and my illness started  to get worse  people started to realise I was strugling.There couldn,t believe the lack of support I was getting from my doctor. Even my boss told me to go back to my doctor and demand to see some one that could get to the botom of things. He reluctently sent me to a Skeletel mascular therapist who told me I had osteoathritis in my back but didn,t seem to bothered about the pain I had in all my other joints and musles. She was concerned about the chronic fatigue I was suffering and wanted to know why my doctor wasn,t doing any thing about it. I just seem to get sent from one physio and pain therapist after another,nothing seem to work. My condition got worse to the point I could no longer work I  then sank into a deep depression. So my doctor sent me to see a mental health nurse and just after three weeks she told me she felt I was suffering with me/cfs. My doctor told me it is just something we are labled with when there can,t find anything else wrong with us. So my therapist insisted he send me to a me/cfs clinic from there I was diagnosed with me. I  have since changed doctors and the one I,ve got now seems to be a lot more understanding and willing to help me. I can talk to this one with ease knowing he,s listening to me and taking me serious I couldn,t with the other. I always got into a right nervess state when I so him.The me clinic really helped me I am improving its just a slow process.

       I feel ok today but my new doctors put me back on my happy pills for three months coz i got really down over the winter with not being able to get out. I once read of a lady whom spent her days living in an iron lung I can,t get my head round how she coped.

       My husband is taking us to the zoo on tuesday so that is something to look forward to but I,ll be making sure we take my mobility scooter coz I wont be able to get round with out it. I can,t wait I think i,m more excited then the kids are. My grandson is only two years old so he wont understand were we are going. But I cant wait to see his face when he see all the animals.                       

                  I look foward to hearing from you :-)

                    hope you,ve had a good day

Posted 4/12/2009 5:58 AM (GMT 0)
Hi Jacki, I have been doctoring again.  My GP is off for 3 months on maternity leave & I saw someone else in the same clinic.  I really love my Dr & was not happy to be going to someone else but she, Dr. Ashley, is very good.  She absolutely believes there is something else going on.  I was dx'd with Fibro in Spring of 2004 & with ME/CFS in the Fall of 2008.  I know there is something else.  When I went to the Cardiologist last Fall he said my lung xrays were not clear so I went in for a CT scan on Tuesday & it was very interesting.  I will be going for my third echo cardiogram in 6 months on Weds with a Cardiologist I really do not like.  Then in the afternoon I will see a Pulmonologist for some tests.  Then back to my GP & on to the Rheumy.  So, I either will be dx'd with something & hopefully will get to feeling better or I will go down in flames under the pressure of the medical bills.  I had taken some time off from Doctors so I could get out from under so many bills.  I don't know, if I didn't think there was something I wouldn't put myself through this.

It sounds like you have a good Doctor, there are so many who are closed minded & just don't get it.  The world is so full of Auto Immune diseases & illnesses & if they don't learn soon they will be left behind.  Patients are getting more savvy & with the Internet they can find alot of their own answers.  I have gone to my Dr with printouts & she has listened to all I have found. 

The zoo sounds like so much fun, I hope you all had a good time.  I so enjoy being a grandmother.  I wish I had more energy but I do what I can.  I love to garden & so I have my grandkids come over (the ones who live near by) & plant what ever they want.  Deylan always plants peas & Emily has Strawberries.  I used to have huge flower gardens & a large veggie garden but had to really pare it down.  Last year I gave away about 150-200 perennials & I was glad to see them go to good homes, I had been watching so many of them die for the last couple of years & just couldn't watch it any more.  

I hope the weather hasn't kept you down, it has been so bad for so long I wonder if there will be an end to bad weather.  Take care, hugs, Denise

Posted 4/13/2009 11:29 PM (GMT 0)
hi everyone,

i would like to know if post viral syndrome is related to cfs in anyway? i heard from many people that it is and it isnt!
Posted 4/18/2009 8:33 PM (GMT 0)
How are you doing Jackie? Well, I hope. Just checking in. Hugs, Denise
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