Has anyone recovered from CFS and Fibro

Discussion in 'General Health & Wellness' started by gary475, Mar 28, 2010.

  1. gary475

    gary475 New Member

    Good mornin.

    I have been sick since July and my doctor says it is due to a virus that will go away but I am still sick. Have any of you fully recovered from Chronic Fatigue Syndrome and Fibromaylia? I am on adderal, anti inflammory med, Cymbalta and Ambien. I am only 40 and think I am on too many meds.

    My husband tells me to exercise and that will make me better but if I over do it then I am down for the whole next day.

    I am on Short Term Disability right now and my carrier has provided it from 2/12 - 4/5 but indicated in a recent letter that they will not approve LTD for whatever reason. Unum has been hard to work with and I don't know what to do... have any of you experieced this?

    I am also in jeopardy of lossing my job because the company I work for only employs 7 employees and my boss told me that he would be calling me soon to come back to work and that if I can't then he will terminate my employment so I really need to get better.

    This is affecting my marriage and my job and I don't know what to do... Any suggestions?
  2. gapsych

    gapsych New Member


    There is a disability board on PH. It should have lots of good information. I believe they still have the sticky at the top of that board which also has some disability information.

    Do you have private disability or would your disability be SSDI?

    I don't know the ins and outs of SSDI but am sure other people will chime in.

    The CFS/FM board also has lots of information specifically on CFS/FM.

    Unfortunately, at this time, you can only treat the symptoms. For a very few, these medications will bring them up to nearly functional but the reality is that it doesn't for most of us. It looks like you are already on some of the recommended medications but it is not helping? Sometimes it takes testing different meds. and combinations before you get one that is the most helpful.

    I would also think about getting a disability attorney. How awful for them to tell you that they will not give you disability later. So now they can predict the future??

    Are you seeing a rheumatologist?

    I can certainly relate to the employment thing. A lot of us have gone through the same thing.

    If you are given an AD, it is not just for depression but for some people can help with the pain. Depression is common AFTERWARDS, as this has such an impact on our lives.

    Speaking of this reminds me. It helps if you sit down and write all the ways this DD is affecting your life. That is what the disability boards want to hear and is also helpful to your doctor.

    Take care and keep us posted.
    gap
  3. TwoCatDoctors

    TwoCatDoctors New Member

    I'm on the Disability Board. One huge problem that strikes me immediately:

    (1) Your Doctor states: your problems are due to a virus THAT WILL GO AWAY. (This means your problem is a temporary one that will resolve itself and is not permanent). This is a medical opinion from the doctor that is treating you and is obviously what he put in paperwork to your Short Term Disability Company.

    (2) Your Short Term Disability Company state: THEY WILL NOT APPROVE LONG TERM DISABILITY for whatever reason. It actually makes sense that the Company would not approve long term disability, BECAUSE YOUR OWN DOCTOR IS STATING YOUR CONDITION IS NOT PERMANENT AND WILL GO AWAY.

    It is very important that before pushing for Long Term Disability, that your doctors FULLY SUPPORT that you have medical issues that leave you PERMANENTLY DISABLED and thus qualifying to apply for Long Term Disability. At present, you are not sitting well to apply for LTD as your doctor does not support you on LTD.

    Go to the Disability Board and read: ARTICLE: HOW TO TALK TO YOUR DOCTOR TO SUPPORT YOUR CLAIM (and I am the poster of that article). It will explain how to discuss your case with your doctor. If your doctor will not support you being permanently disabled, you may have to find another doctor that will support you being permanently disabled.
  4. HeavenlyRN

    HeavenlyRN New Member

    I agree wholeheartedly with everything that was said above.

    I am also on STD right now. I have one STD through my employer and they have been wonderful from day one. However, last July I purchased a supplemental STD insurance from a company that came to my place of employment. We have had nothing but trouble from them. I was out of work for 7 weeks last fall due to foot surgery. I was back to work before I ever got a cent from them. I've been out again from December of last year (5 weeks after I went back following my foot surgery).

    I have yet to receive a dime from them. It's one thing after another. I was told that I would have an answer from them last Wednesday. Then it was Thursday. Then it was Friday. When I called on Friday I was told by their lovely automated "person" that they required more information and that they had sent me more information in the mail. I just about lost it.

    My husband and I called the NYS Insurance Division and filed a complaint. I then called the company back to tell them that I had done that, and guess what...........I had a return call within 2 hours apologizing for the delay. They were oh so kind and "really wanted to help" me expidite things, so they gave me a different fax number and a real person's name to forward the documents to.

    Oh, I forgot to mention the name of the company. It's UNUM!!

    So, the reason I'm telling you all of this is not to demoralize or upset you, it's - no matter how sick you are feeling - continue to push them. Make it your job. Make sure you know what your doctor has written down on any paperwork that is being sent in. KEEP COPIES OF EVERYTHING!! My doctor has told me that many of his other patients have had problems with UNUM. He's pretty cool when it comes to filling out paperwork. He doesn't lie, but he knows what to write down. Don't let the b*astards get you down (pardon my French!). If you do nothing else.....fight them until you win! And don't hesitate to call the Insurance Division in your state.

    Good luck and let us know how it goes.
  5. Nanie46

    Nanie46 Moderator

    I think the biggest chance of recovery comes with finding what actually caused the fibromyalgia and chronic fatigue syndrome.

    I believe in most cases that the cause is infectious.

    In many cases, people here have found that a chronic borrelia burgdorferi infection caused their symptoms, along with coinfections like babesia, bartonella and ehrlichia.

    With proper long term treatment, people have then recovered.

    Read the symptom list on p 9-11 and coinfection info p 22-27.....


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
  6. achinginmybacon

    achinginmybacon New Member

    i can only tell u that i have had fibro and cfs for 8 long years, I have yet to hear anyone get better, but in fact it starts to attack other parts of the body. I take oxycontin with percoset for break-through pain I have been through so many hospital, i have went to 42 doctors, but is all the same, give me another pill, send me down the road. I am a man and not many men . have these horrible diseases. i wake up ever morning in bad pain then take all my other pain meds and muscle relaxer to just get going, then i have to lay back down to let my meds start to ease the pain just so i can plan my whole day out, so god bless And i hope you prove me wrong. good luck feel free to e-mail me thesaint0499@yahoo.com
  7. dory4three

    dory4three New Member

    I was on the couch sick with cfs for about 13 years. I couldn't do any house hold chores, my husband did everything. I even had a scooter for shopping, but I have given that away. I have cured myself with alot of supplements and graded activity. I used to think that doctors were the answer but they had nothing for me. I take a ton of supplements and somethig that has helped me was vitamin i.v. drips. There is a alternative cancer treatment center in my town and they have great vitamins in their drips. It takes an hour and a half for the vitamins to drip in.
    Now I can do everything! I go every day now! It's like I have a new life now. There is hope...I did it.
    Dory
  8. briz1965

    briz1965 New Member

    i have never heard of anyone totally recovering but it can be controled. you have to try different meds for the fibromyalgia it takes awhile to find the right ones, it took me over a yr. on this one off that one and still trying new meds, you have to find the ones that work together. your marriage well mine too i just say if you don't want to try to undrestand, support me, or vist the dr. with me, or read info on fm then just keep your comments to yourself i'm still alive and be thankful for that. your still the same person on the inside. i have 7 kids and a husband and no support, so i stay strong for myself.
  9. briz1965

    briz1965 New Member

    i have never heard of anyone totally recovering but it can be controled. you have to try different meds for the fibromyalgia it takes awhile to find the right ones, it took me over a yr. on this one off that one and still trying new meds, you have to find the ones that work together. your marriage well mine too i just say if you don't want to try to undrestand, support me, or vist the dr. with me, or read info on fm then just keep your comments to yourself i'm still alive and be thankful for that. your still the same person on the inside. i have 7 kids and a husband and no support, so i stay strong for myself.
  10. Scamp479

    Scamp479 New Member

    My wife has been diagnosed with frbro. Shes 30. Actually filed for disability at urging of friends and the state actually gave it to her! We were eating right (she also has Celiac) and exercising daily walking the dogs etc. Went to the Dr and he had been reducing her meds ( first Dr we found to help us cut back instead of flooding us with pills and scrips) and she told him she hadnt felt better. 3 days later we got into a head on collision. No we are back to square one. Worst pain ever. knee surgery didnt help. Some Drs say it doesnt flare up, I send them a copy of Fibro for Dummies. It Does! Its def been a strain on our marrage. I'm healty 38, out doors guy, hike, bike, kayak etc. Hard motivating her. I'm a guy I never say the right things. Go to www.invisibledisabilities.org and get the free book for your husband "But you LOOK good" it will help him undeerstand, its a guide to undwerstanding and encouraging people living with chronic illness and pain. Hope this helps.
  11. clamhr

    clamhr New Member

    Either your doctor doesn't believe you or doesn't know enough about fibromyalgia & cfs. I started with fibro/cfs in the late 1990s thru 2007 and was on and off STD a number of times, i'd say once a year minimum. then OUT OF NOWHERE, it went away. don't ask me how, i don't know what happened, all i know is one day i woke up, pain and stiffness free, and have no idea why. Last year damn if it didn't return. Unfortunately when it returned, the flares are worse. stiffness to the point of having difficulty walking. cfs so bad i've been on and off disability again. I might suggest you go to a rheumatologist; i can pretty much guarantee you'll be on disability in no time. Good luck to you.
  12. laurabeachside

    laurabeachside New Member

    Dear gary45,

    I just saw your question today- June 23,2010. I was diagnosed back in 2006 with Fibromyagia and Rhuematoid Arthritus (it sucks - excuse my comment - but it does!) Most doctors don't even understand what FM really is. So the first key I would say is that you need to find a doctor that understands what you are going through. I had a doctor for over a year and a half and all he did was perscribe me pain medication (which really didn't work - but it took the edge off and at times I was able to function well - and then crash and burn if I over did it) but he fired me just reciently and it sent me into a detox off the medication - which I never want to go through again!

    I filled for SSDisability two in a half years ago because I finally accepted defeat! When I was diagnosed I was determined this was not going brake me and I left a job that I was very successful at and started my own gardening business - I worked in peoples gardens pulling weeds and assisted in redesigning their gardens. I managed to do this for almost a year and a half but then it took it's toll on my body and I was bed ridden in September of 2008. That's when I began filling for disability. This is a long drawn out process - you usually get denied twice and then you need to hire a attorney! I just had my hearing June 8th of this year and I am still waiting to hear what the Judge decided.

    I believe this can be cured with the right doctors, a good herbalist, good nutrition and light exercising in the begining. That is what I am determined to do. Someone sent me a book anonomysly called - Fibromyalgia & Chronic Myofascial Pain Syndrome by Mary Ellen Copeland, M.s., M.A. and Devin Starlanyl, M.D. I have a few other books on the subject as well but this one seems to be what everyone should read - you and our doctors!

    You mention also how this is affecting your marriage - YOU ARE NOT KIDDING! My husband and I have been on a roller coaster ride - we have fought terribly - I left him and left Florida and went out to California thinking I could start over - I had to return to where I lived the person I was staying with sent me home and luckily my husband took me back - but we have still contemplated divorce several times - It has been SO HARD FINANCIALLY! I have never been this broke in my life! But I am determined to make it (married or alone!)

    There are some other sites to consider like the fibromyagiaassociation.com and fibrocenter.com.

    I wish you much success on your journey! And most of all remember - "You are not alone" and who cares if people say to you "Well you look okay!" - they are not inside your body! Keep us posted and if you ever need a friend my email is setrons@bellsouth.net - I would gladly welcome you into this little cyber network that I have maintained through those various sites and facebook!
    Laura :)
  13. tigerlily787

    tigerlily787 New Member

    Gary475,

    I am sorry to hear that what you are going through is affecting your marriage and your job and that it is putting you in harm's way with Short Term Disability. Here are my ideas:

    Please print this out and use it in consultation with a doctor and do not take this as medical advice, but I have some ideas for you. I am a former CFS patient who recovered and re-entered the work force. I keep tabs on the CFS crowd because some things I found out need to be known so that others will heal.

    A branch of alternative medicine called "Naturopathic medicine" or "Naturopathy" may be able to help you, but be certain not to delay (they may have booked schedules). Look on the Internet for "Naturopathic physician." if you choose to go that route. You might have adrenal fatigue, judging by the exercise intolerance.

    Many physicians do not understand that exercise will make a CFS patient worse (not even the physician who diagnosed me with it knew that exercise made me worse). I have had adrenal insufficiency several times and found REPEATEDLY that low adrenal gland function will cause exercise intolerance, even to the point where climbing up the stairs is difficult - pausing every three steps to rest.

    My exercise intolerance magically improved under adrenal support and when I have proper adrenal gland function, I can ride a bicycle 5 miles, swim, run, climb up stairs repeatedly, take hikes, and such strenuous activity without incurring a huge crash afterward the next day or even the same afternoon (I would get a real weird sleepy-groggy feeling right before the crash). This may or may not be your issue but here are some ideas:

    Research for a naturopathic physician who uses "Bolen Blood Analysis" to determine degree of adrenal function. This is where a naturopathic physician analyzes your blood under a microscope to determine this, and parasites, degree of dehydration, inflammation, and more. CAUTION: Standardized drug medicine, if they were to find adrenal insufficiency, would put you on an adrenal drug and if you got off of it you would die. So, building up adrenal gland function is FAR better than being dependent, I think.

    I found that a diagnostic method a naturopathic physician used that was very successful in finding other causes AND adrenal fatigue (such as liver congestion, B vitamin deficiency, vitamin D deficiency, adrenal insufficiency, heart protein deficiency and other things) was the Acoustic Cardigraph. Ask the physician which diagnostic methods they use before you spend any money anywhere. There may be more than one underlying cause, but to me, when you said that you can't handle exercise, I thought of my own experience.

    Energizing foods: Does parsley make you feel more energetic if you eat a substantial amount of it every day? Parsley is good for adrenal gland function, among many other things. It strengthens both kidneys and adrenals and cleans the urinary tract, among other things.

    Find a naturopathic physician who carries Standard Process supplements if you have adrenal fatigue. Standard Process has glandulars which build up the adrenal gland function. I didn't find the ones in the store satisfactory and Pure Adrenal gave me a bad reaction.

    Dr. James Wilson wrote a book about adrenal fatigue. Find it in the library if you can. Does it sound like you, what is described? Here is the title: "Adrenal Fatigue: The 21st Century Syndrome."

    Dr. Schulze 1-800-HERB-DOC has a supplement called Superfoods. This REALLY bailed me out BIG TIME. It has powders of all the different foods that he considers superfoods altogether in one.

    There are various companies offering green powders made of the juice of barley. I am uncertain if I am allowed to mention a brand name. I don't want to be kicked off for doing so. I find that they enhance my energy and the quality of my blood, which enlivens my whole body.

    If you are unable to get Bolen Blood Analysis or Acoustic Cardiograph testing for adrenal insufficiency, you might want to get an Adrenal Stress Panel (find a naturopath who offers this). Here is the address from the paper from the box they gave me with vials to put blood in. I can't tell you how it turned out because I didn't take it. I was diagnosed with adrenal insufficiency via Bolen Blood Analysis:

    Diagnost-Techs, Inc, Clinical & Research Laboratory, PO Box 389662, Tukwila, WA, 98138-9662

    Helpful things I have tried with success: American Ginseng root. (Be informed on your own. There are many different types of ginseng, and this one is what fit my situation. Males can take other kinds of ginseng as well.... look it up...) Health food stores carry these roots and they can be soaked for a day and a half and chewed up. They give adrenal gland support without diagnostics. You should do your own research as whether or not it is a good idea if you take this. It is not for people with hypertension. I am not a doctor and I cannot know all the implications of this.

    Also, I have tried carrot-celery-beet-cucumber juicing and find that it increases energy, deepens sleep, and cleans blood. A cheap juicer can be obtained from Wal-Mart for $19.99 to $29.99. This helps energy a lot. I can't say that it helps exercise intolerance but, when a person's adrenal glands are low, it takes more energy out the whole body to run it, and pushing, pushing, just wears out the adrenal glands.

    I recovered from CFS back several years ago.

    I keep tabs on the CFS world because what I learned from this experience means I should give back.

    Tigerlily787