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Chronic Fatigue Syndrome
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Posted 2/16/2009 3:10 PM (GMT -8)
Hi everyone again,

I'm back again, in behalf of my husband. His symptoms point to CFS.

My question is, what is the best doctor to see to diagnose it? Our PCP is not good at diagnosing.

When we look up the symptoms, they all point there. Any little exertion knocks him out.

Any support would be appreciated. I have chronic pain myself, so between the 2 of us, it has been so hard plus we have no support system. We moved from the opposite coast because we were told by my son's recruiter he'd be here and meanwhile, he's still on the east coast, along with other relatives. It's pretty hard somedays to remain positive when you feel like you're up against the walls and the doctors aren't helpful.

My faith is in God. At the moment it's a big struggle.

Thanking u in advance for any advise, etc. 

Posted 2/16/2009 11:54 PM (GMT -8)
Hi Denim, nice to talk with you again.  I was dx'd by a Rheumatologist.  They seem to be the Doctors in the know about Chronic Fatigue Syndrome.  I took printouts with me about several illnesses, one time & went over each one with my Doctor.  She was able to rule out almost all of them, having dealt with them in other patients.  I hope you & your husband find some answers soon.  I know, for me, the fatigue is just totally debilitating, especially this time of year.  Have your husband quit worrying, if he is anything like my husband, he is thinking he should be able to take care of you, he probably feels useless but we all have to come to terms with having an illness.  Stress & worry only make the symptoms worsen & cause us to flare longer.  We didn't ask for this illness but we've got it.  Many hugs, Denise

Posted 2/17/2009 1:28 AM (GMT -8)

Dear Denise,

Thank you soooo much for that lovely reply. I was off to sleep, not feeling very good about his problems, mine and ours. It is a very hard thing when couples are not well at the same time and to watch each other suffer is heart breaking. I feel helpless and try to reassure him and we share our faith, which is a must with us. Stress definitely causes my leg pain to flare and only now am I beginning to come to terms with my own chronic pain. Your message to me was so kind and I can't thank you enough. He was always the caregiver. He took care of his dad for many years when he was young and for him now to just to be able to get to the couch is hard and he had such a bad day today. Thanks again for your compassion and bless you truely. Are you saying the cold weather makes it worse? We are in Arizona, it's not super cold but colder of course than any time of year. I'll let him know what you said.

Posted 2/18/2009 1:52 PM (GMT -8)
Hi Denim, yes for me the cold weather makes me worse.  I also have Fibromyalgia & with that hot, cold, humid, drop in barametric pressure, etc. will bring on a flare.  I do think it effects my CFS as well because I get very fatigued beginning in October & will be sick until February or March.  It is more the fatigue & I used to tell my Dr. that it wasn't the Fibro.  Since I was dx'd with CFS I have read that winter is hard on CFS patients but I don't remember where I read it.  Memory Fog is another symptom of both.  So, your husband may see a bit of relief come spring.  I live in Montana but the seasons do seem to affect us all no matter where we live, because we are affected by the change itself.  It's almost like our bodies have trouble keeping up with any change & sometimes it just gives up.  You are both having such a hard time of it right now, I hope you can find the relief you both need.  I have just learned myself, that this is also an emotional illness, so if you need a med for depression please speak with your Dr about it.  I deal with depression & take a medication for it which has helped me alot when dealing with my pain, fatigue & depression. 

Do you sleep well?  that is a big thing to get under control first because without sleep we don't heal & our symptoms can quadruple.  Just some things to think about & speak with the Dr about when you each go to see your physician.  A rheumatolgist would definitely understand all of this for your husband.  Hugs to both, Denise

Posted 2/18/2009 2:56 PM (GMT -8)
Denise, you are a sweetie. People here are so compassionate and we all need that. I am having a better week b/c I'm not depriving myself of the pain meds but my husband can't catch a break and I do not want to force anything. I sleep pretty well, thank God and normally he does, but he wakes up feeling bad. Something has got to give. I am only offering suggestions but praying for a miracle. Thanks for all your kindness. Bless you and I hope you are doing well. My heart goes out to all the people on these boards. Bless you all. 
Posted 2/27/2009 2:49 PM (GMT -8)
Hi Denim
I'm new here but i've been diagnosed with chronic fatigue syndrone for 2 1/2 years now and just starting to live with it. Was diagnosed by my family doctor (an old guy) and he had me checked out also by a Rheumatologist, a shrink, and a second opinion from a doctor from the cleveland clinic.
Been checked for everything you can think of. Doc says since there's no test for CFS you need to eliminate everything else that could possibly causing this problem. I have the severe tiredness,
aches and pains all over, sore throat, head aches, and upset stomach all the time.
It just hit me one day out of the blue. Haven't worked since! Tried all kinds of medications but no help. With some people the meds do help somewhat. I've learned for me to stop worrying about it and just do what i can when i can. My wife still works so i do all the house work, grocery shopping, and cooking BUT i do it at my own pace. Try to at least matain some routine in your life.
Worrying and any type of stress only makes the situation worse just like too much physical activity.
I take dolobid for pain as needed but since i've learned to pace myself i don't need it too often.
The hardest thing for me was admitting to myself that i can't do all the things i used to do. It does get better when it's accepted this may be the way things are going to be. It was the first step for me to getting on with my life such as it is. You never have a clue how you are going to feel from one day to the next unless you over do it one day then you'll probably be exhausted for the next two days.
Fortunately i sleep all night but i wake up just about as tired as when i went to bed and usually i need a nap or two during the day depending how busy i try to be. I quit fighting the urge to nap because they do help.
I know i got a little carried away here being my first time but hope this helps and i'll be thinking of both of you.
If you would like to know anything else just ask here. I'll be back.
Posted 2/27/2009 4:48 PM (GMT -8)
Thanks grayeagle--you gave a lot of good advise.

Mu post was for my husband. I have chronic pain. In other words, we both aren't at our best and we both got it about the same time--pretty inconvenient. May I ask do you get disability for it?

It is tough on us both. Neither one of us has been diagnosed. With all this money they are throwing around in the budget, I wish they threw some our way. Accepting a condition I think is the hardest part. I was into working out very steadily for many, many years and bam, I hurt my back, that cleared and the pain traveled to both legs yet not one doctor has actually helped and my husband has had strange symptoms, one after another. His latest are trouble breathing, esp. after any type of exertion. I think that was my first question. Does that sound like CFS? You didn't get carried away at all, btw. And I greatly appreciate all that you told me. My husband needs some real answers. He has me worried, which affects me emotionally and physically. Hearing him say, he has trouble breathing will scare me. His stomach hurt him so bad, but that seems to be getting better. I had him taken to ER a few weeks ago and he had various tests ran and they saw nothing. I would like him to see other specialists. For me, I don't know what else to do, but that's another story. A miracle would be handy about now. But I'll take a diagnosis. I'm tired of hearing, we see nothing when, he is most comfortable just being on the couch. It does get maddening and I would love to work but I'm not sure if I can commit myself to it. Somedays I think I can, others no. Anyway, this was suppose to be about him. I thank you for you reading my post and being so kind to answer it. I wish you well and you sound like you are handling it all very well. God bless you and your wife. Thanks again for writing me.

Posted 2/28/2009 1:09 PM (GMT -8)

Denim, I forgot to ask you if your husband was checked for asthma?  If you have already told me please forgive me, the Fibro fog takes away my memory.  There is such a thing as exercise induced asthma, it could also be asthma (not meaning in a lesser sense but can't think how to put it). 

grayeagle, it is nice to meet you & welcome to the forum.  There is a wealth of information here & lots of answers.  I also go to the Fobro forum, you should check that out.  I am sorry you had to quit working.  I also had to quit about 4 years ago, fatigue is my biggest problem, I would say.  Have you tried B 12 sublingual?  I take one aday for energy & to keep me from wanting to lay on the couch all day.  It is dissolved under the tongue so the B 12 is absorbed more quickly into the blood stream.  I accidentally took it at night, once, instead of my melatonin 5mg sublingual.  I was up & awake all night & kept getting up over & over, so I know it does work.  Speak with your Dr about trying it.  I buy it at my local Pharmacy, there is a liquid B vitamin sublingual I am going to try next time.  Pacing is the only way to go.  Have you read the Spoon Theory?  You can find it on the Fibro Forum in the second thread called Fibro 101.  It is written by a person who has Lupus but is so applicable to all of us who deal with fatigue & Denim, you would get alot out of this for your husband.  I clean my house using the techniques of the Flylady.net  She teaches how to clean & declutter by pacing yourself.  Well worth both of you looking into. 

Well, I have rambled on long enough.  Hope you all are doing well today.  Hugs, Denise


Posted 2/28/2009 2:35 PM (GMT -8)

Thanks Denise--years ago I used to take b12 myself. I never could tell if it worked. I'll tell my husband.

No, he wasn't checked for asthma. The doc gave one of the most assinine answers I ever heard--when my husband said his lungs hurt--he said it was lethargy!! How foolish does that sound, or is it me? I was looking up asthma also today. Some things fit, some not at all. There is no wheezing, or coughing. I really don't know. I spend so much time looking things up. A doctor should be reliable enough to have ideas, we can't seem to find a doctor to do that. The b12 is a good idea. Laying on the couch all day is not good for him or me. I always was on the go. He has always had a slow paced way, I even thought maybe ome of his problems were thyroid related. I wish these doctors went by symptoms more than by blood tests. I believe for the most part most doctors can't diagnose. I come up with ideas before them--not to say I'm right, but like on House (the show), get ideas and rule them out. The docotors have gotten so lazy it seems. Thanks for the tip on the b12. I want him to try it.  Bless you, Denise and be well.

Posted 2/28/2009 5:31 PM (GMT -8)
Denim, I am really beginning to think that your Dr is the main problem you have.  I just read a post on the Fibro forum from Jeannie143, it was a reply to someone going through a similar problem to yours.  She wrote "remember half of the Dr's out there graduated in the bottom half of their class"  That is so true.  I do not trust Dr's until they prove themselves to me.  I have dealt with the best of the best when it comes to Doctors & I have seen the worst.  You have to shop around, it is imparative that you find a good Dr.  If my daughter hadn't tried just one more Dr, my grandson would have died.  She had taken him to 6 or 7 different dr's in our area & they all poo-poo'd her.  Basically, laughed at her.  We have a genetic problem that can affect the heart.  Do you think any of them would take her seriously?  NO, she started to think they were right.  When he did get the help he needed, the cardiologist who had driven 130 miles to see him, said he had maybe 3 days left.  Deylan is 10 now & doing well.  Do not stake your lives on any one dr.  As you can see, I do have my bandwagon, I do get on it sometimes.  So, shop around, ask your friends who they like, go online & check out Dr's in your area.  If you go to a Dr & they say it is all in you head then tell them to visualize the money you will be paying them because that is all the will get, What's in their heads.   Love & hugs, Denise

Posted 3/1/2009 7:38 AM (GMT -8)

Hi Denise,

I know this doctor isn't bright. I can't afford to pick and choose--however even when I spent a lot of money, the doctor was a cold hearted woman, who didn't do a thing for me. I have chronic pain and she didn't help. So it showed me, the quality of doctors has gotten to be a joke at our expense. I am so glad your grandson is fine now. How frightening to have heard what your daughter heard and praise God for getting your grandson to him. I haven't met one good doctor.None want to be bothered and blow us off. I have no friends or relatives here either to ask. My old doctor who wasn't perfect, but I feel knows more than this guy, has come back and I was considering seeing him again if he is taking new patients. I always believe there should be an answer for things. I have chronic pain and this doctor has not one idea. My husband and I have to come up with ideas and he gladly gives referrals--but to shrug your shoulders is just absurd.How do you have no ideas what's causing my legs to feel this pain. I have ideas. I want a Doctor House--I know it's tv, but someone who has ideas and doesn't just give up. Thanks for listening. And again, I am very happy that your grandson is well.

Posted 3/1/2009 10:16 PM (GMT -8)
Hi Denim,
I personaly don't have any breathing problems nor have i heard of any associated with cfs.
I do have the foggy brain and problems with memory as you have heard above. I now carry a little notebook and write down things i need to remember just in case.
As far as social security disability due to my illness i hopefully finally will know tuesday this week. It's been almost 2 years since i applied for it and have been turned down twice so this week i finally get to see the judge about my case. Will let you know how it went. One of the biggest problems with cfs is there is no test for it. My doc says from all the tests he and other docs have done i appear to be one the healthiest poeple he's seen in awhile. Only two things found at all were a slight decrease in my testoterone levels and a slight vitamin D deficientcy neither of which were off enough to raise any concern.
Fortunately i've seen the same doctor for about forty years and he knows me pretty well so i'm hoping his records help my social security case. I'm 54 years old and worked for 36 years so that should help also.
I have one comment about docs,,,,Some may say an old doc may not keep up with the times or the latest info but an old doc has seen a lot of patients with many various illnesses and therefore has developed a lot of experience.
I also think i've got a good doctor because he admits when he has done all he can do and also refered me to doctors in other fields for there opinions. Unfortunately for me they didn't find anything either.
My wife calls me the eternal optomist bacause as i said to her "at least it isn't life treatening" although it may feel that way because my life had to change so much. It's not a pleasant way to spend my retirement.
But this can go away just as fast as hit me in the first place so there is always hope.
Sorry i don't have any suggestions on finding a doctor.
Hope this helps. You're both in my prayers.
Posted 3/1/2009 10:30 PM (GMT -8)
Hi denise.
Thank you.
All my vitamin levels are good but tried the vitamin B's in the past with no noticeable results.
A couple of times in the past when the pain was really bad doc gave me a shot of B12 and cortisone
and it took the edge off my pain but doc said we can't do the cortisone very often so i just endure it in case someday i might REALLY need it again someday.
Good to meet you also. Take care.
Posted 3/2/2009 8:08 AM (GMT -8)

Grayeagle, you have a great attitude. My hsuband will say well, it can't be life threatening but it's hard when out of nowhere, my husband can't do much. I wonder are they missing something?

The doctors I've seen basically havd us out the door very quick. I'd like to meet a doctor who seemed like they cared and wanted to solve our problems. The new doctors I would think would be up on things, I haven't seen it either. Thanks for taking the time for reading my post and replying, all of the responses help. Bless u all.  

 

Posted 3/3/2009 9:03 PM (GMT -8)
Hi Denim,
Saw the judge today for my social security and it looks promising but it'll be 6 to 8 weeks more before i'll know his ruling. If i get turned down i'll appeal it again.
You said "I wonder are they missing something?" and boy do i know that feeling well.
Days after days i read everything i could find on the internet about CFS/FMS and i would have more questions everytime i saw my doctor and he would answer them all.
Your question is probably the biggest question haunting me and everyone here. As for myself and i venture to say many probably have found their way here on that same quest for information. I personally believe my doctor did as good as he could with trying to find a cause and at this point i'm just trying to get on with my life as best as i can without dwelling on that question everyday as i use to. It use to drive me crazy.
I'm not saying everyone should give up. I'm not giving up,,,,just not dwelling on it everyday anymore.
I'll keep reading and asking my questions. Heck, i've got some new questions from reading in here.
Like i found someone talking about a doctor finding hidden diseases of the heart that show something like t-wave indicators or some such thing that have symptoms of CFS. I know my doc checked fro infection and i think he even mentioned t-waves at one point but i'm going to ask him about this again next time i see him.
It's in my note book of things to remember, Got that brain fog thing going on.
Remember one thing it's you and the insurance paying for that appointment so don't let him rush you.
I assume you have insurance,,,If you're not satisfied with your doctor you might try talking to the insurance company about finding another doctor. They just might help,,,it's in their best interest for you to get well and
quit paying for this also.
Good luck dear,,,,,I'll be checking in later.
Posted 3/4/2009 10:05 AM (GMT -8)

Hi Grayeagle, I wish you the very best with social security. Why do they make it so darn hard?

If you were a liar and cheat, you could probably work it, but I can't do that. But if you worked for years and need help, it would be very nice if it was made simplier, you know the way they seem to be making it when the people don't live here. Sorry for throwing that in, but some of the things I read just seem so unfair. Why make it so hard to collect some money you paid into when you need it now?

Good luck to you, sounds good for you.

Be well.

Posted 3/5/2009 10:06 AM (GMT -8)
i would think a good internist could help...........
Posted 3/5/2009 11:50 AM (GMT -8)
I don't know how they work it. But yes, that's a good idea, as long as the doctor they were following was knowledgable. I would like to see doctors having to take tests every so often. From the doctors I've seen, it seriously looks like they didn't learn much. I posted a question about getting mris--it would make sense not to let time go by in getting new ones--but not one doctor said a thing about mine being old and a new one would be in order. I just had a test done on my nerves that should have been done when all of this began. I got it, only because I asked for it. He said there was no nerve damage. 

If you find yourself a good doctor, you are so fortunate--the ones I've met, seemed like they just wanted to get rid of me. I know I'm not alone. Thanks for taking the time to write, bless you.

Posted 3/6/2009 11:30 PM (GMT -8)
Hi everyone. I've been fighting CFS with fibromyalgia, for 20+ years. Before docs even heard of FBMG/CFS. My insurance required a referral so my doc at the time wouldn't give me one - said, "You have two small children, of course you're tired." Until my mother and sister were both diagnosed with the same. I have also been fighting hypothyroid, TMJ, Migraines w&w/out aura, arthitis, irritable bowel, plantar fasciitus, along with chronic sinus infections, and chronic urinary tract infections. I now suffer with debilitating depression and anxiety.

However, although each day is a struggle to keep from spending the day on the couch. I keep searching for whatever will releave the tireness. I think I could live wth the other stuff if I could just not feel exhaustion from the moment I get up. I have heard of PFO (a cardiac problem) for which I'm seeing a new neurologist for. He may dismiss me, but then I need to find another who will listen.

some things I have found that might help others (and did help me some)

Get a new doctor, or several specialized doctors.

My reumatologist has helped me a great deal Something to help me sleep at night - muscle relaxer Flexeril. My psychiatrist changed my antidepressant to cymbalta which both helps with the pain from fibro, and depression and I didn't gain loads of wt on it. Also she perscribed provigil which wakes me up. My insurance wouldn't cover it and provigil was expensive until a neurologist who specializes in sleep diagnosed me with sleep apnea. I cannot use a cpap machine yet because of other underlying health issues but now he can prescribe the provigil and my insurance covers it. I really was at my lowest point when I was suffering with continuous sinus infections and urinary tract infections for years. Doctors would send me home over and over, telling me it was just a cold, or no bacteria showed up so it couldn't be a UTI. Then I would wait until I was even sicker and go back again. Sometime I couldn't go back in and I'd end up in the emergency room. I began to get defensive and depressed at just the prospect of going to the doctor. Well the UTI were solved when I read a sentence in a book - urinate after intercourse - I have not had a UTI since - a doctor couldn't tell me that??????!!!! also Acid reflux causes sinus infections! As soon as they started treating me with prevacid the sinus infections stopped - they had wanted to do surgery and pack my nose for a week!!!!!!!!!!!!!!! Gerd also can cause post nasal drip, runny noses, ear infections. And when my son was treated he even stopped his allergy shots. I thought solving my thyroid problem would be the magic fix. It wasn't . But someday something will. I just have to keep reminding myself that not all doctors know all things. And after about 6 or 7 years I have an appointment for a new endocrinologist.

I know I seem to have digressed a long way from chronic fatique, but it is there every minute of every day. I fight to keep from giving in to it. Sometime just winning a little battle with my health gives me strength to keep going. Somedays the CFS wins, somedays I do.

Think better day tomorrow - try a different doc - you can always go back. Hugs to you all!
Posted 3/11/2009 6:31 PM (GMT -8)
Lyme disease often the root cause of Chronic Fatigue Syndrome and Fibro. Please try to see an lyme literate doctor. I think that as more research is done, my guess would be that over 90% of CFS suffers have lyme disease. Right now there is no known cause, but soon we wil find the truth. Please let me know if you need the name of a great lyme doctor in your area. If you have been tested for lyme please know that the tests are unsophisticated and only pick up a handful of strains when there are hundreds.

You should not have to live like this. Please let me know if I can help.

good luck.
Posted 3/14/2009 12:14 PM (GMT -8)

Lf1980, sorry I didn't get back to you.Everything seems like a major hassle. And I'm not in great shape because of I'm not even sure, I think spine problems--which makes it hard to stand in one spot long. I was an exercise nut and might have done it to myself. Years ago I had a top notch job in NYC, now I can't even get a 99 cent store job. Someone has to work in this house and even with my physical problems, I think I can do it before my husband because I don't think they would diagnose me with anything specific. Sure I can say I have problems and I do think I can work at a desk, problem is, I don't get interviews and as we know, there aren't many jobs. The cheap paying stores would higher a younger person living at home before me. I am so disgusted at the moment and I think the bi-linguals would definitely get a job before me. So a white semi middle ager is now the minority. I think they would even higher an older person before me. Ok, sorry, I went off venting because this is a bad predicament we are in and I believe in miracles but our problems have been going on for years, since we moved where we are.

My husband is falling asleep so often, I think he has CFS, though I'm not a doctor. He says he feels like he has a flu often or just plain sick. He hardly goes out anymore. He was out for a short time yesterday and thinks that's why he feels bad today or worse today. I can't remeber the last time he felt good. I thought calling a lawyer first, might not be a bad idea, but he never did.

Does anyone know if CFS is hard to get disability for? It should be given. He can't work and I feel helpless.

Thanks for listening and an open to any ideas. He has so many things he claims are wrong with him, yet so far. nothing shows up on tests. It seems like they make it all hard--yet I hear this woman with the 14 babies is getting a new home? It's so insane. I am trying to help and stay calm but it doesn't work somedays.

Thanks for listening. Oh, do most of you agree a rheumotologist(sp) is the best to see? It's getting so crazy. He does have an appointment with a gi guy for stomache problems and wants a colonoscopy. It is just getting overwhelming.

Oh, question about lyme disease, aren't you suppose to see that circular rash? Or is that a thing of the past? If so, and you feel that strong about CFS and fibro stemming from lyme disease--we are near Tucson.

I agree, my heart is broken looking at him and I don't feel he should live like this either.

Thanks again.

   

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