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Struggling with CFS Diagnosis

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Chronic Fatigue Syndrome
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Posted 6/1/2012 8:13 PM (GMT 0)
Hello.

I am new to the forum and was hoping for some insight and advice. I have been sick for a year. My symptoms include chronic fatigue, headaches, sore throats, nasal allergies that I've never had in the past, weakness in my arms and legs, severe lightheadedness, trouble concentrating at work, intermittent nausea and inappetance, intermittent diarrhea, and an overall feeling of not being well.

I have had many tests and seen many specialists. Tests include but not limited to a brain MRI w/ and w/o contrast; multiple blood panels for organ function; STD screening; RA Factor, sed rate, stool tests, etc. It's really been a million dollar work-up. I've seen internal medicine specialists, infectious disease doctors, a neurologist, and others. I'm seeing a rheumatologist in the next few weeks as well.

My primary care physician told me that I have Chronic Fatigue Syndrome. She works with Dr. Montoya at Stanford and started my on a cource of Doxycycline and Acyclovir for the next six months to see if it helps.

The symptoms came on suddenly last year in June when I was working in Joplin, MO after the tornado. It took months to feel 80% better. In February, I did volunteer work on a small Carribean island and once again experienced full-force symptoms resulting in several weeks of being stuck in bed.

Prior to last year in June, I've been healthy and happy. Since last June, I feel like I've lost all sense of control in my work and personal life. I miss work more frequently, have to leave early, and am unable to fulfill all of my family obligations (thank God for my mom and dad!).

At any rate, I'm struggling with my CFS diagnosis for a few reasons. First, I'm having trouble accepting the fact that my life might be permanently changed and impacted by chronic disease. Second, because I work in veterinary medicine, I have a hard time with my diagnosis because there is not a test for CFS...and my past scientific training plagues me. :( And finally, I feel like if I accept that I have CFS, it means I stop looking for answers...and I could be missing a diagnosis of something that is treatable.

I am sorry to write out a dissertation, but I would really appreciate anyone's feedback, experiences, suggestions, etc. Thank you so much in advance for your support and understanding.

 

Posted 6/3/2012 8:42 PM (GMT 0)
did you have spinal fluid anaylisis done too?
Posted 6/4/2012 5:54 AM (GMT 0)
Has anyone considered fibromyalgia? There is no definite test for it but it is a lot like CFS and there are actual tender points that they can apply pressure to to see of you might have it. It also usually follows a big stressful event in our lives and it sounds like you have had at least several of those. in the last year.

It sounds like they have run all the blood tests so hopefully they have tested your thyroid.

Good Luck, I know how frustrating it can be.
Posted 6/4/2012 2:39 PM (GMT 0)
Nana68: The only thing I haven't had done is a spinal puncture. I had asked the neurologist of it would be helpful and she didn't think it was necessary (I asked following the brain/cervical spine MRI). Do you think it would be worthwhile?

ToughEnough: My mom has fibromyalgia. No one has 'tested' the trigger points on me, but I have not had any pain other than headaches, which I used to never get. My mom and I have some similar symptoms...but she seems more overwhelmed by pain than fatigue, although she does get quite warn out. She saw an acupuncturist and herbalist several years ago and has been in remission ever since.

Mayflower: Thank you so much for the suggestions. I have seen two infectious disease doctors and they have run some very extensive panels...tested for lots of common parasites as well as several zoonotic diseases. I worried about the same thing, especially since I work in shelter medicine and handle a lot of animals with parasite loads and that have an unknown health history. I also had them test me for Brucellosis and a few other diseases from large animals because I have lived most of my life on a cattle/horse ranch.

I just got a referral to a rheumatologist, which is about the only specialist I haven't seen yet. I'm going to call today to schedule my appointment.

Thanks so much for the suggestions and support. I really appreciate it. :)

Posted 6/4/2012 5:25 PM (GMT 0)
Every one's fibro symptoms are not the same so I am glad you are going to a rheumatologist as they can also screen you for fibromyalgia.

I am so glad you mother is doing better. I've so to acupuncture too and unfortunately still have fibro. She does help with my foot pain which everyone says isn't fibro but they don't know what it is. My foot has had an MRI and I'm had the nerve testing and all by a foot doctor.

I also go to an Atlas Chiropractor and she got rid of my headaches which removed the need for high blood pressure medication years ago. Atlas chiropractors have advanced training and the treatment is more specific and is not the traditional snap crack type of adjustment. My former chiropractor helped my back but could never get rid of my headaches.

Good luck. I hope you figure out what is wrong and that it is something that is curable rather than something you have to learn to live with.
Posted 6/4/2012 5:45 PM (GMT 0)
Thank you, ToughEnough! Interestingly, my mom also has foot problems. She was diagnosed with plantar faschitis. She wears some special orthotics and recently went on a three week trip to Jordan and did lots of walking. She seems okay.

I have been going to an acupuncturist since March and it definitely helps. I would like to go to my mom's herb person, but at this point, I don't want to take anything that could interfere with my current medications so I'm waiting on that.

Thanks so much for everyone's comments. I see the rheumie tomorrow so we shall see what he says!
Posted 6/5/2012 12:15 AM (GMT 0)
I won't do the the herbs either as I don't know how it would interact with my medications either!

I was optimistic when the foot doctor said I had Morton's Neuroma. First the shots didn't help and the testing, including an MRI didn't confirm his diagnosis. At least now they believe that I have the pain and it's not in my head!!

HldingOutHope - Please let us know what you find out tomorrow!
Posted 6/6/2012 2:21 PM (GMT 0)
Well, I saw the rheumatologist. I feel like perhaps is was a frivolous pursuit for answers. I have several of the sensitive points that people have with fibromyalgia, but my symptoms in general reflect extreme fatigue and weakness and not pain...so he didn't think that is what I have. He focused mostly on depression, which I have not suffered from. Certainly, after being sick for a year now, I do feel down but the fact that when I got sick I had a very acute onset I have trouble believing the cause of my CFS is related to depression. He offered my an anti-depressant to take to see if it helps. He said many patients with CFS and fibromyalgia benefit from these drugs and have improved energy and sleep. I really don't like taking medications, but I accepted the prescription and am planning do conduct some research. In some ways I am tempted to try it because it this point, I'd do just about anything to get my life back and I suppose I have nothing to lose. But on the same token, I am apprehensive about taking medications to treat something that I don't think I have.

Has anyone taken anti depressants and had any luck? And if so, which medication(s)? He prescribed Vivactil (one in the morning for a week and then add an additional tab at lunchtime thereafter). He said this medication is a little 'old school' but he has had a great deal more success with it in comparison to some of the newer drugs, including those used to treat fibromyalgia.

Anyway, I suppose I have some research to do and some decisions to make. I just hate taking medications and not being 100% what is wrong. I discussed this with him as well...he said I have had a very extentsive work-up and that my doctors, collectively, have ruled out just about everything...so CFS it is.
Posted 6/6/2012 3:45 PM (GMT 0)
I was put on an anti-depressant but forget which one as it was in 1998.  I have been on one or another through the years and now after chronic illness and 3 surgeries I am on two anti-depressants.

I have heard that the old school one's are better but don't think I've ever taken the one you've been prescribed.  I did take the fibro 3, as I call them.  I tried Cymbalta, Savella, and Lyrica and had to go off one as it made me think about dying all the time - not sucide but dying.  One made my ankles swell and the other didn't do anything.  There are many people that benefit from these but not me.

I think you should try it, after researching it, and see if you feel better in a few weeks.  If you don't talk to the pharmacist or doctor on how to taper off.  It is important to taper off.  I didn't on one of the above, I just quit taking it and that was bad news.

I hope it helps you.  None of us want to take medication but sometimes we need to.  It could be you will just have to be on it several months and then you can taper off.  It doesn't mean you will be on it forever.

Take care

Posted 6/6/2012 5:12 PM (GMT 0)
Thanks. :) I really appreciate you sharing your experience. I think I will try it and see how it goes.
Posted 6/7/2012 10:34 PM (GMT 0)
HOH,

Have you been tested (properly) for lyme disease and its coinfections (inc bartonella, babesia, anaplasma, mycoplasma)?

Working closely with animals/ out doors is a risk factor. It is now being increasingly recognised there are competent vectors other than ticks and lyme diagnoses rarely involve the causative bacteria Borrelai burgdorferi (or varients) alone.

The onset and relapsing nature of your condition is consistent with an stealth infectious agent.

My advise would be to see an LLMD without delay - and don't be fooled, ID consultants do not have a handle on these conditions.

Nothing to loose and everything to gain,

Good luck,

Hugh

PS if you suspect an infectious agent avoid steriods!
Posted 6/8/2012 5:35 PM (GMT 0)
Morti81,

Thanks so much for the information. I have been tested for Lyme's and its associated coinfections. However, the more I've read about Lyme's the more I see how difficult it can be to diagnose. I had a Lyme's test and Western Blot when I was acutely sick last year in June/July. It was negative. I was tested for the coinfections last October or November.

How do you find a LLMD? I live in the Bay Area and have an HMO which requires me to stay in the John Muir Health Network. Do you think it is worthwhile to discuss this again with my ID doctor and get additional tests? He's pretty obliging when I ask for things and is one of the few doctors that seems committed to getting me an actual diagnosis.

Thanks so much!
Posted 6/8/2012 5:38 PM (GMT 0)
Mayflower:

I have been very lucky to not have pain. I'm certainly overwhelmed at times by the fatigue and weakness, but other than headaches (which I never had before last year), I have no pain. I do have muscle weakness, especially in my arms and the lower part of my legs when I am not feeling well. I'm going to follow up with my ID doctor again soon. I read up on the Vivactil and I suppose it's worth a try...I just feel a little awkward taking another drug for something I don't have. :(
Posted 6/8/2012 6:32 PM (GMT 0)
HOH,

Unfortunately the current tests for lyme and coinfections are not very accurate. Whilst positive test results generally indicate disease, negative ones do not exclude it. The accuracy of the tests will vary according to the type of test, strain of bacteria, lab used, whether or not a person is on antibiotics when blood is drawn and the individuals immune response amongst other things. Strickly speaking a western blot should be interpretted according to the bands presented and not just returned positive or negative.

As a consequence of this lack of accuracy its essential that you find an experienced physician in the area - or lyme literate medical doctor, who is able and willing to diagnose you clinically and on the basis of your disease history.

I'm not in the US so I can't advise you on finding an LLMD there. That said HealingWell has an EXCELLENT lyme forum which is very informative and active. If you post a query there I am sure someone will point you in the right direction. FYI generally when discussing LLMD's people will not mention a doctor by their name, just their initials, due to the controversy surrouding lyme and not wanting to endanger those physicians who do work in the area.

http://www.canlyme.com/ is also an excellent site and has a worldwide support finding link. I suggest you contact the relevant person listed for your area.

I am not sure what the situation will be with your insurance - you will just have to ask the doctors you come across. If you are struggling Lyme-TAP provides financial help for diagnostic testing if you meet their requirements.

Beware of ID consultants. Unless you are able to access one at least cost, who's opinions do not have the potential to negatively impact future treatment (by for instance informing your insurance you do not have LD) I would steer clear. It is very important you understand mainstream doctors including ID consultants generally do not understand lyme and sing from the CDC/ IDSA/ Steere hymn sheet. You may well walk away from another consultation having been convinced you really cant have lyme - like many others have before you. Enough said.

There is much controversy surrounding lyme and some are concerned that it is being used as a junk diagnosis for a whole host of non specific conditions. Whilst this may happen, I and every other person affected by Lyme will tell you that it is real and must be dealt with seriously. It is far from a hard to catch, easy to cure condition if not treated immediately. Do your research and be your own advocate!

Good luck,

Hugh
Posted 6/8/2012 7:35 PM (GMT 0)
Thank you Hugh! I will definitely research the possibility. :)
Posted 6/9/2012 4:30 AM (GMT 0)

Hello,

I too am new to this forum. I can relate to what you've described because I too went through all these tests and more when I was in my 40s. I'm now 70 years old. Please don't give up. I'm a retired registered nurse and I wasn't taught about this and neither are most doctors. For at least 10 to 15 years I also had intractable chest pain for 6 weeks at a time and was told it was all in my head. I gave up at one point and was in a psychiatric hospital for 2 months because I was suicidal. I don't understand why anyone would ever think that those of us with unexplainable chronic symptoms enjoy not being well. It's devastating. I was fortunate to have found good therapists which kept me going. After many years of symptoms and depression I went into remission. No one can tell me why. Again, they said it must have been an emotional illness. I also suffered severe trauma, but that was when I was 20 years old. I was later told I probably suffered from PTSD which wasn't a reconginzed diagnosis at the time. When I was 55 I had more physical trauma and this is when the symtoms started again. I've tried everything and only recently have I learned what helps and what makes it worse. We are all different and diagnosis like these manifest differently in each of us. If I had not kept trying I would not have lived to meet my grandchildren and still enjoy some parts of life in spite of all the symptoms I continue to have. It's not easy and we rarely find doctors who really understand and try to help, but I did and I'm very grateful. It took many years, but again I'm glad I kept trying and never gave up. The most recent treatment I found is therapeutic yoga which isn't the same yoga offered as classes. Those are mostly for healthy people who are trying to become stronger or stay healthy. That kind of yoga is dangerous for us because it can exacerbate our symptoms and put us in bed for days. Therapeutic Yoga Therapist must be registered and will only treat one-on-one. If I understand the rules of this site I'm not supposed to encourage any kind of treatment, but I at least want you to know that this is available and is helpful to many people; especially those with chronic illnesses. I still struggle every day to enjoy life as much as possible. It's not easy, but I'm probably alive because I refuse to give up. I hope you'll post again and let us know how you are.

Posted 6/9/2012 5:07 AM (GMT 0)

I just posted a reply to "Holding out hope" and it's obvious I'm a new member to this forum. I should have read all the posts before I posted anything. I learned more about how the forum works. I would like to tell you how my symptoms started. I had an auto accident when I was 20 (I'm now 70) which damaged my vocal cords which is part of our airway. I had a tracheostomy for 15 months and multiple surgeries. You don't see many people like me because they usually die instantly. My sugeon told my parents he didn't know if I'd live or not. I did and have always been grateful that my surgeon manged to keep me alive even though I've never been able to talk above a whisper since then. After a year of surgeries and hospitalizations I went to nursing school. I graduated in 1965, worked, got married, had two children, traveled. I worked in 5 states and 9 hospitals and had a wonderful life. In 1997 my airway closed again and no one could tell me why. I had another tracheostomy and multiple surgeries for 5 years. I was promised the trach would be removed but it never was so I have a permanent tracheostomy. All the laryngologists who did my surgeries finally said no more surgeries; go home and live with a permanent trach which I've done. 5 years ago I fell and was told I had a torn rotator cuff that required surgery. I had the surgery and learned afterwards that I didn't have a rotator cuff tear which means the surgery was unnecessary. Unfortunately the surgeon or anesthesiologist made a mistake and damaged a nerve in my arm. That caused total paralysis of my left arm/hand. I was referred to a neurologist who told me the nerve wasn't severed so I could regain some or all of the use of my arm/hand. I had a severe allergic reaction to the drugs she prescribed which was another devastating blow to my body. I was totally incapacitated for 18 months, was in physical therapy 3X a week for 18 months. I got most of the use of my arm/hand back but the nerve damage left me with chronic pain in that arm/hand and the result of all the traumas to my body left me with Fibro, CFS, chronic pain and numerous other symptoms. Living with the permanent tracheostomy wasn't bad at all compared to living with CFS and everything else. I've probably had 25 surgeries in my life and many of them made me worse rather than better. However, I doubt I would be alive had I not had some of them so I have to take the good with the bad. I've been looking for a support group for a long time and accidently discovered the HealingWell web site. I'm so glad to hear others talk about their experiences. Many people I know who have FM or CFS etc. don't want anyone to know and refuse to talk about it with me. Very strange to me because I find it helpful. Of course there are some I know who've been sick for so many years with not much help and they're too angry and depressed to seek help via support groups face to face or online. Thank you to all who have posted and I look forward to reading more posts in the future.

Posted 6/9/2012 6:36 AM (GMT 0)
Livinginthepresent

Thank you for your posts. You have survived and never quit. I'm sorry that you've had so much pain and suffering in your life, you are a survivor.

When I get really down I think about my husband, children and grandsons. I've considered giving up but can't do that to my family. I was diagnosed with an inflammatory bowel disease, ulcerative colitis in 1997 and it took doctors years to diagnose it. I was on large doses of prednisone and gained a lot of weight and kept on pushing myself at my firm. I am a Certified Public Accountant and after working for one of the top firms in the country and for a few businesses started my own CPA firm. It was very successful and after the diagnosis came I was in denial and kept working myself too hard and right into fibromyalgia. I sold it in 2000 and it was like putting up a pet to sleep or something. I had to do it as I couldn't work and had 4 employees by then. I took a year off and was working part-time until March 2010.

I ended up having my colon, large intestines,rectum and appendix, which is around a 5 foot organ removed. On top of having this horrible disease it involves a part of the body no one wants to talk about - it's embarrsing and rare so no one knew what I was going through. I thought I was going to die several times in the hospital and wanted to once. I didn't, lol. The surgery also involved the construction of a j-pouch which the colorectal surgeon made out of my small intestines to serve as an eventual substitute for the function the colon had done - when it worked.
I had a temporary ileostomy and eventually an operation to hook up the new plumbing when it was healed. That was 17 months ago.

I have had complications after complications and even another surgery for an incisional hernia. I went to the Mayo Clinic for examination a month ago as my Gastroenterologist (GI) didn't know how to treat me anymore.

The surgeries have made the fibro worse. I've lost 75 pounds, most of what I'd gained back in 1997-8. I could never diet it off. My thyroid is all out of wack and has been since the surgeries as well. I think the doctors are grouping all of my non j-pouch surgeries into the fibro bucket, even though some of them don't fit there so I've had testing for other autoimmune diseases.

I'm on 2 kinds of antidepressants and anxiety medication. I found a wonderful counselor and she is helping. My diagnosis is PTSD, depression and anxiety other than PTSD. I'd suffered other major traumas in my life and all of this just pushed me over the top.

I spend most days in bed and restroom, have recently recovered from a C-diff infection and am hopeful that I will get better with the treatment prescribed by the Mayo doctor. He prescribed 6 months worth. If I don't get better I will have surgery again to go to a permanent ostomy.

I have a wonderful understanding and caring husband and two awesome children. I'm grateful I didn't get to sick until they were in high school and college. They both married awesome people and I have 2 wonderful grandsons. I have not suffered through all of this to give up now. I am determined to have a better quality of life than I do now. I'm stubborn.

Support groups are wonderful for us as we can talk to people that understand what we are going through and we can help those that just became ill.
Posted 6/9/2012 5:27 PM (GMT 0)
Toughenough

Thank you for sharing your life with me. It moved me to tears. Not because I feel sorry for you, but because I know you understand what my life has been like. Only those who have lived through all you have can understand. Our specific physical diagnosis and surgeries aren't the same, but the toll taken on our lives seem parallel to me. I wouldn't be alive without my beloved husband of almost 44 years. He has been by my side during everything and taken care of me better than most health professionals. He tells people that Doctors have tried to kill me and I just won't die! LOL He's the only one in the world who truly knows what I've been through and has been my major support and cheerleader. As far as I'm concerned he's a Saint. Fortunately he learned how to take care of himself when we were in therapy together in our 40s and that has kept him sane and healthy. Our 2 children are loving, supportive, outstanding adults, but they live so far away and have busy lives. It's hard not seeing them or our two grandchildren only a few times a year, but they do call and write a lot. I must read your post more slowly again later and possibly write more. Again, I can't tell you how much your post means to me. With Gratitude, Livinginthepresent
Posted 6/9/2012 5:45 PM (GMT 0)
Livinginthepresent,

I appreciate your kind words more than you know. I'm having and painful day. I over did things a few days ago and am paying for it now. I should have known better but when the energy is there I'm going to use it! BTW we've been married almost 37 years and our adult children live far away too.

Back in the day we married young, didn't we?
Thank you for caring,
TE
Posted 6/20/2012 7:14 PM (GMT 0)

Livingwell. If I understand the rules of this site correctly, we aren't allowed to sell products. Do you have CFS or FM or anything that we talk about here? If so, then you know that most of us are highly sensitive to any kind of chemicals. I certainly am. Therefore, unless the spray you're selling is an all natural essential oil I could not use it. I can't tolerate the smell of perfumes, scented hairspray, aerosole sprays etc. I use all natural cleansers in my home and on my body. Thanks anyway.

Posted 6/21/2012 12:55 AM (GMT 0)
Sonya,

It is against the rules to come on here to sell anything. nono


FYI - The rules are the same for most SUPPORT group sites. nono
Posted 6/21/2012 3:23 AM (GMT 0)
Toughenough. Hope you had a better day today. I had the best day I've had in a while. I tried not to overdo so I won't be wiped out tomorrow. Won't know for sure until I wake up tomorrow. I'm so sensitive to so many medications I have a hard time finding drugs I can take. Tried a new one for side effects of another drug and it didn't work so I'm itching like crazy and feel like I'm going to jump out of my skin. No point in going to bed because I won't be able to get comfortable. If it isn't one thing it's a dozen others.  BTW, I noticed you included restless leg syndrome in your diagnosis. I also have RLS, but accidentally found a treatment for it. Sounds crazy, but my Rheumatologist, who treats the FM, tested me for Vit. D deficiency and my level was extremely low. She told me to take Vit. D every day. That was a couple of years ago and as long as I take the Vit. D I don't have RLS. There's no explanation for this. I've forgotten to take it a few times and each time my legs nearly drove me nuts. As far as I know there's no treatment for RLS and I'm just lucky and grateful this worked. Anyone else out there ever experienced this?

Livinginthepresent

Posted 6/21/2012 4:55 AM (GMT 0)
Hi Livinginthepresent,

Thanks for your post. I had a very low vitamin D level around 4-5 years ago and my Internist had me take prescription mega doses then I took 10,000 daily, on the advice of my Nutritionist Chiropractor, her BA is in nutrition. She said MD's are usually satisfied when you get into the low end of normal but she said it's better to be on the high end. I now take 5,000 per day. Unfortunately it didn't help my RLS, which was discovered during my sleep apnea study and subsequent readings from the machine - I don't know how they tell, maybe a blip or something. My husband complained about me moving legs too. I take a 2 drug combo pill for it and need to take it before acupuncture or if I need to hold still a long time like an MRI.

I had appts. with both my Internist and Chiropractor today. My husband drove me to the appts. as I'm still having too much anxiety once I get further than a little 5 mile radius around our home. I know sounds pitiful, but it is what it is. I told my Internist that I was having RLS while awake and she asked if I had it in the morning or when and I said late afternoon to early evening. She said a lot of people have it later on in the day and told me I could take it twice a day or as needed. So I won't take it unless I get the twitches and/or jerks. It's a low dose of medication for Epilepsy or Parkinson's, I forget which it is as it's the second one I tried. The first one gave me side effects.

She also told me to make an appointment with my Rheumy as it's been a year. I don't know why but she thinks the Rheumy needs to check out my fibro again. I just realized all 3 doctors I've been talking about are women plus my therapist is a lady. My GI's, Surgeon, Podiatrist and Dentist are men, so I don't discriminate,lol.

Today was better than yesterday. Tuesday when I have a short physical exam, of some sorts, by a Social Security Disability hired Doctor. Next Thursday I have a psych evaluation by a SSDI hired Phd. I think it's a waste of taxpayer $$ as they have medical records from 5 doctors - including one from the Mayo clinic, a therapist and even from my Chiropractor - I didn't even claim the headaches she keeps at bay but they wanted all the information so I gave it to them.

Both my Internist and Therapist think I will be approved but I hear 70% or so of first applications are denied. I've filled out a mountain of paperwork and questionnaires, my husband had to fill one out too. A lot of people don't have to have any exams. I'm going to call the claims lady and ask her if she's received all of the records requested from everybody - in a very nice way. I was approved for my LTD insurance benefits last year with much less work and I expected to have to fight with them. If I get denied I'll have to hire an attorney to appeal it as I don't have any fight left in me.

I'm sorry you are itching so tonight. I hate that, I get it from some IV medications after operations and spend hours rubbing lotion on after surgeries. I will get to sleep late too as my new plumbing works over time after dinner every night :(

I really rambled! Thanks for being a friend :)
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