Hello,
I too have been battling CFS for a year now, my doctor said that ( you will be fine go home and get plenty of rest) He also said that CFS only last for a couple of months. I have been tested for lupus - negative, the only thing positive was the ebv and cmv viruses. Here is my symptoms

Chronic kidney infections
Hair loss
Joints hurt - e-rays taken- no arthiritis
If I set to long I can hardly stand up
If I stand to long I am so stiff and the bottoms of my feet feel as if I was bruised on the soles of my feet
I turn beet red when out in the sun
My hands, feet, and calves swell up when in the sun
My eyes get watery and hard to keep open in the sun
Major weight gain ( My stomach is horrible )
Exhaustion
If I fall asleep sometimes I can sleep for hours up to 15 or 16 hours.
Sometimes I cant get to sleep at all.
Pulsatile tinnitus
Headaches
Taking a shower, getting dressed, doing dishes, is a all day event.
Sometimes when talking I say things that I didnt realize I said, I sometimes have a hard time cooking or remembering what the goes in potatoe salad or measuring out the oatmeal for my kids. I am slow to respond to questions.
Vaso-Vagal Syncope
COPD
Braycardia - AV node block which I was recently implanted with a pacemaker.

I just wondering if CFS/M.E is difficult to get disability

any comment would be welcome. :bouncing:

First of all, I would hightail it to another doctor! Anyone who would tell someone with your symptoms to go home and rest and you will be be fine in a couple of months should be tar and feathered.

Second, I would see a rheumatologist as your symptoms sound more Lupus-like than CFIDS. You could also visit the Lupus board here for more definitive information.

All the best!

make sure you go to see an endocrinologist as well

they make you feel like even if you came in the office with your head in your hands they would still deny you. They are just filtering out people. I tried two times and was denied but I gave up and just decided to work, wish i hadn't :(

Thank you for your replys, I have been checked for RA, Thyroid, and Lupus all negative.
I really thought that I had lupus as well. But they Rhumey says NOT..lol

Thank you for your replys, I have been checked for RA, Thyroid, and Lupus all negative.
I really thought that I had lupus as well. But they Rhumey says NOT..lol
Poolsharky,

But have you actually visited the Lupus board here? I am also diagnosed with UCTD = undifferentiated connective tissue disease - a kind of precursor to Lupus. Many people on that board have said that their first diagnosis was not Lupus and it was only later, and with further tests, that their rheumy's conceded. But if you are satisfied with his/her (your doc's) decision that is o.k. too. But, like me, you may have a combination of things, i.e., an arthritis factor, CFIDS, Hypo/Hashimotos, etc.

Wishing you all the best as I know the worst thing about any illness is not knowing what you have. Hang in there and it will become clear.

To answer your question, I have visited the Lupus board back in Nov and Dec of 2004. They also thought that it sounded alot like lupus as I have many symptoms of it just not the blood work to agree. I have seen many doctors and specialist. And as of this time I am out of work because of my illness I was fired. I cannot afford the cobra insurance as my heart surgery was 62000.00. and I was only 13.00 shy of having my out of pocket met so I get to pay the 20 percent that is left, And they have denied my unemployement. I am just really upset over this that a company after 15 years would let a person go because of a illness and then deny unemployment. I am in the state of missouri if anyone knows of any good doctors to go to here, please advise. There should be a law against this..lol..... Just a bad day :confused:

Get your thyroid checked and get tested for lymes.

Derek

I have Lupus, RA, Osteoporisis, Fibromyalgia & I do have disability. But, I was extremely lucky !! I am up for a review though and that has me very concerned. There is absolutely no way I can work. I think the key is to document everything from your point of view, get copies of ALL med rec including all tests.

Good luck,
Dee :D

Hey there,

I just wanted to jump in here and share with you my experience if I may.

I was dx'd with FM in March '02 and last summer I developed E-Coli, which, to me, seemed to set off all kinds of icky things inside me. My symptoms changed, dramatically, and I have recently been told by two different docs that I have CFS. I was in the process of looking for a different rheumy (we had a slight disagreement as to what was in my medical records!) so I saw another rheumy who said yes, CFS, but believes FM and CFS go together. My PCP isn't too familiar with CFS, though he doesn't believe it is an Infectious Disease like my old rheumy does. I called her after the other rheumy said "CFS" and she said she didn't "do" CFS that I needed a referal to an Infectious Disease doc for that, and that she also did refer to those docs. (she hates me! LOL) Sooooo....my PCP really doesn't want to touch the FM or the CFS cuz they are so complex and has done some blood tests on me, EBV and complete blood work up, you know: Lupus, RA, yada yada yada which have all usually been negative. HOWEVER: And this was news to me, my PCP said the symptoms I am showing are telling him to lean to more of an autoimmune disease like Lupus. Tho I test negative for Lupus, that is not uncommon, you could still have it. He says it's not the "bad" kind the Sysetemic Lupus, there is another kind that begins with a "C" can't reacall right now. But from what I understand Lupus can be in your system, just not showing up on tests, that is when they dx it by symptoms. He made an appt for me to see a different rheumy who specializes in FM and CFS, says he wants her to to tests on me for autoimmune conditions.

I have all the classic FM symptoms, but the past 6 or so months I have been extremely exhausted, taking up to 4 naps a day. Sleeping more than being awake. My pain has changed. It's more muscle and joint related now. There are trigger points all over my upper back that are so sensitive you can't even touch them lightly. My armpits are sore often, I get frequent sore throats, and the glands in my neck get sore, sometimes inflamed but not always. Same with the "nodes" under my armpits, sometimes they are just sore, sometimes they are swollen. I run fevers off and on. I break out in sores in the corner of my mouth that will just NOT go away. Sometimes the sores are on the inside of my mouth. I have a general "unwell" feeling. Always feel sick. If I exercise even just a bit, or exert myself in anyway, I am sick for two days after. I have severe back problems which need surgery, soon, I can't lift my right leg, so one of my docs now believes I've waited so long to have my back fixed I may have permanent nerver damage, and I believe the pain from my back and the FM and CFS all "feed" off each other. I can't affored surgery, I can't affored the PT/Massage Therapy I've been prescribed. Without money, it's kinda hard to pay for that stuff. My husband is unemployed currently. We filed Chapt. 7 Bankruptcy. I may have to "surrender" my car back to the lien holder.

So, I guess I got off track there! Sorry. I believe that Lupus is not as cut and dry as once believed. Of course there are many people who have it, full blown, but I believe that there are others of us who are just borderline, and that stinks, cuz, "if you can't SEE it, it ain't there" is what a lot of docs believe.

Oh and I am on my second application for SSD waiting for my hearing before the ADJ. If turned down again, I'll apply for a third time. I will keep applying as long as my lawyer will let me! And if he drops me, I'll find another lawyer! Simple. It IS frustrating, and some people win lickity split, some wait and wait and wait. But I'm not giving up. I know I can't work and who in the heck is going to hire me when they know I will be calling in sick more than 2-3 times a month, and that's in a good month. I have carpal tunnel syndrom, chostochondritis, Fibro, CFS, multiple herniated lower lumbar discs (one that is torn) possible nerve damage, Cervical spinal stenosis and DDD, spinal stenosis, spondyolisis (sp?) and severe bursitis in my right hip (so bad that I can't lay on my right side cuz it feels like I'm laying on a rock, so bad that I have to sit on my left butt cheek cuz the pain is so bad). I think that's it, besides the recurring sore's on my mouth! At my first appeal hearing I only had the back problems and the FM and I had only been out of work 6 months, so I believe that is why I was turned down. Now I have been out of work since Feb '03 and have much more wrong with me, so hopefully I have a better chance. I am also 46 which is young (to them!). But I look at it this way, I began working at the age of 15 with a work permit, and have worked non stop execept for 3 years when I chose to stay at home with my son. So, I have worked for more than 25 years practically without a break, they OWE me! LOL Another thing, every single one of my family members (uncle, grandmother, and mother) all died of cancer before they were old enough to collect Social Security. Grandma was 58, Uncle was 49, my Mother actually DID collect SS for 2 years before she died at the age of 65 in September '03. My aunt is 56 and has also had cancer, but she is a survivor. She's cancer free now for a year. So my family has worked and paid all that money to the govt, and there is a good chance that I will never collect it either if I wait until I'm "of age"!

So, DO NOT give up on you SSD, that's what they want. Apply, get denied, then get you a lawyer, and show them you are not going to back off of them. If more and more CFS or FM sufferors win SSD it only makes it easier for those who come after us.

And YES, get a different doc. CFS does not go away, it's chronic and something caused you to get this condition, and most likely Fibromyalgia will follow your CFS dx, the two are very similar and "feed" off each other. So watch your symptoms, as they are very similar, only CFS carries with it much more intense fatigue. FM has fatigue, but in my experience ( I had FM for 3 years before I got CFS) the fatigue from CFS is so intense it's hideous.

Oh and I would like to tell you all, I take a med called Provigil 200mg, which helps with my fatigue and mental clarity. I notice a big difference. I'm still tired, but I'm not exhausted to the point where I need 4 naps a day! I still nap, but that's when I'm having a really bad day, or I'll just lay down to rest, but I don't sleep endlessly like before the Provigil.

So, good luck honey, and keep us posted.

Here's wishing you a good spirit,
tk

I filed for SSDI due to CFS and won. I won based on "mental impairments" including anxiety and depression and not the CFS alone though. If you only have CFS, it is very hard to get SSDI because they don't usually recognize it as an impairment. Don't give up and keep fighting for the benefits that you've worked for and earned. Tracy