Fatique & pain

[waterlilly]

I came down sick in Septemper 2006, flu, bronchitis, head cold, pneumonia(broke a rib coughing), fever, diarrhea, vomiting, Ihad everything at once. 3 months later after two rounds of antibiotics and a yeast infection I was finally able to function fairley normally. At the end of my illness I developed anxiety and a severe rash, the Dr. put me on a medrol dose pack, which made me impossible to be around, the rash finally cleared up in about 10 day's but left some permanant marks. I now suffer constantly with chronic fatigue and an achey (achy) body. Some days it is hard to get out of bed, writing a simple bank deposit slip is difficult. I sometimes feel like someone wrung my arms and legs out like a washrag. I have muscle spasams and stiffness to the point where stairs can be a challange. My eyesight has changed dramatically, some days it is ok and other times things get fuzzy. I have been tested for lupus since it runs in my family (mother, daughter and a cousin) but so far the blood work is ok. I have to re-do my Cardio lipid antibody which was inconclusive and my CK was slightly elevated. When I get overheated I get this tingling sensation all over my body and I sweat a lot more on my left side. I was diagnoised with thoracic outlet syndrome in 1992 after stroke like symptoms and have since developed raynauds syndrome on my left side. I am getting very discourage and despreatly looking for answers because my lifestyle is being seroiusly interupted.

Thank you, Waterlilly

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
    The recovery from a serious illness can be time consuming and if you were bed-bound for several weeks then it can take months before your strength returns.  However, some of the symptoms that you describe are concerning for possible multiple sclerosis including the fatigue, one-sided body numbness, and the transient visual disturbances.  I would recommend that you get an MRI of the brain and cervical spine with contrast and visual evoked potentials to evaluate for MS.  I would also recommend that you see an ophthamologist to get a dilated eye exam and test of your visual fields and color vision (these can be abnormal in optic neuritis-which often occurs in MS patients).  If the above test are not conclusive then you may need a lumbar puncture to evalute for signs of inflammation (IgG index, Tourtelotte, and oligoclonal bands).
I hope this has been helpful.

[starflower713]

Have you ever heard of fibromyalgia?  It sounds like this could be your problem.  Fibromyalgia is classified as a form of arthritis, because they don't really know for sure what causes it and because it is diagnosed with a set of symptoms it is still considered a syndrome and not a disease.  Research is showing, however, that it is more than likely either a neurological disorder or an autoimmune disorder.  It is characterized by pain in the muscles, tendons, and ligaments.  Other symptoms include: fatigue, difficulty sleeping (trouble going to sleep or staying asleep, not feeling refreshed even after 8 hours of sleep, etc.,) short-term memory problems often called fibro-fog, sensitivity to hot/cold, sensitivity to noise/light, and others.  There is a good website written by Devin Starlanyl who is a doctor and fibromyalgia patient @: http://www.sover.net/~devstar/  There are also some good support groups on the internet for fibromyalgia.  It might help you to join one or two to be able to talk to others who suffer with fms (fibromalgia syndrome) so you can learn how to seek a diagnosis, what to do to manage it, and gain some much needed support and understanding from others who suffer from fms.  You are also welcome to email me anytime @ ***@****  I am a nurse who has had fms since 1993.  

[waterlilly]

Yes I have heard of fibromialgia (fibromyalgia), which is something I am not a true believer in at this time. I am not saying that the illness is not a true illness, I work in the medical field and I do not want to fall victim to an illness that is ruled "no other explination for symptoms" that makes me feel that that diagnosis is one of mystery and guess work. I am very leary of anything that has no solid explination with all of the medical technology available and medical advances we have made. I am not ruling that out, I just feel that the sudden onset along with previous symptoms may be  suspicious. Thank you for your response!

[monkeygirl8]

It sounds more like you have ME/CFS than fibromyalgia. ME/CFS can develop after severe infections, either viral or bacterial (although more commonly viral, I believe).

Before you buy into the hooey about no tests confirming the existence of that condition either, your research is seriously out of date! There is now an international consensus criteria that has been adopted (the US CDC is a little slow on this) that you can look up online, just google for Canadian Consensus Criteria ME/CFS.

Commonly run tests like CBC, etc. turn up normal in the CFS patient. However, sometimes MRI will show non-specific lesions. PET scans and SPECT scans are sometimes abnormal. Viral titers for EBV, CMV, and/or HHV-6 are often out of range, along with other illnesses that the healthy person's immune system normally holds in check. Immune system abnormalities are common, such as low NK cell activity and counts, and something wrong with an RNaseL pathway (some immune system thing  I don't understand). Frequently, cardiac abnormalities are found -- tachycardias, etc. These clearly are not normal test results.

It is true that there is still no single test that can definitively indicate ME/CFS. Everything else should still be ruled out, like MS or Lupus. (Which, by the way, at one point MS wasn't thought to be a "real" disease either because nobody knew the test for it. Just ask the people suffering from it if it was real!)

The tests I mentioned, taken together with symptoms, then lead to a diagnosis of ME/CFS. The frustrating thing then is finding doctors who know how to treat it and help you feel better.

It is worth noting that I have no medical background or training whatsoever. As always, trust a doctor and not some anonymous person on the internet. But please get up-to-date with your understanding of the current research on CFS and fibromyalgia, especially since you work in the medical field. Experts have long been saying that the debate over whether these are organic illnesses is over.

[waterlilly]

Thank you for the information, I will definitly look this information up. I have accepted the fact that I am very much a skeptic when it comes to some illnesses. In the 90's when I developed stroke like symptoms they kept me off work for 6 months and still had no solid answers for me. I see illness every day, some exagerated and some sincere, it is easy to lose faith. I am additcted to my job so my worst fear is not being able to work someday. Thank you agein for your response.

Waterlilly

[Mexican gypsywoman]

Hola all,
I am a woman 54 years old, suffering from Arthritis, Rheumatism, Tendonitis, and now doctors say Fibromyalgia.
My symptoms are:  When reaching for something, or banging my arms, I have immediately muscle cramps soo bad this morning i cried, i feel helpless to think that i will have to live the rest of my life in pain.  I have been a preschool teacher for 15 yrs.  Children are my life.  I cant see myself not being able to do my job like i want and should.
Besides the problem in my arms, my hips, shoulders, legs have arthritis in them. I have constant pain in the flat of my back., problably due to my spine which bone density scans have diagnosed with  Osteosporosis, I would like to know if anyone else has pains like mine and what are they doing about it?  I wake up stiff and sore every morning.  I look young still but my bones my doctor say are like an old football players bones.  Help me if u can.  Thank you.

[Quixotic1]

I am a physician and I agree that these are true, organic illnesses.  Internattional groups and the CDC are indeed collecting vast amounts of data in order to  1) determine whether they are single entities or groups of related illnesses, 2) to determine  diagnostic criteria and 3) to investigate possibilites for treatment.

I don't know the reference to "ME"/CFS.  Is that myalgic encephalitis?  British or European nomenclature?  I do know that CFS here in the US is going by CFIDS (Chronic Fatigue Immune-Dysfunction Syndrome), but has been exploring a new, better name.

I agree that some research online to the more traditional research sites will help ease your doubt.  I, too, practiced medicine during the "chronic mono", "yuppie flu", "chronic Candida", fads and became a skeptic.  But, what I eventually realized is that they were just names for a group ov very sick and not psychiatric people.  Our knowledge of immunology and pathologic mechanisms is improving rapidly.  Things we thought were "hooey" a decade ago, now have clearcut explanations and, sometimes treatments.

There is also a huge reluctance among physicians and the well populace to be skeptical about "invisible" diseases.  Meniere's disease used to be routinely institutionized.  I have two such invisible illnesses: Chronic Autoimmune Inner Ear Disease and Multiple Sclerosis.  They cause fatigue that most days I cannot overcome.  My only luck is that my eyes twitch (visible) and my leg now doesn't work (visible).  But I have repeatedly faced disbelieving physicians who called me everything from a "hysterical personality" to a Munchausen's (one who feign's illness to obtain medical procedures)  That was fun.

Quix

[waterlilly]

I understand that even as a physician you can have your doubts about certian ilness, you have made me feel a lot more secure in my concerns. I am aware that stress is a key factor in what is going on with me, but in my heart and mind I know that somthing is not quite right. The puzzel does not quite fit right, there is something I am missing, leaving out that one key factor is that key. I Just can't put my finger on it, and neither can the Doctor's. I must admit I am very scared, mostly because we are afraid of the unknown, if I knew what I was facing I ould deal with it, but I do not know what I am up aginst. Thank you so very much for your response.

Waterlilly

[patsy10]

I have many of the same symptoms you describe.  I've been like this for 2 years now.  I have numbness, tingling, muscle pain, vision problems and much more.  I twitch from head to toe all day, every day.  I too work in the medical field (RN) and I feel the same skepticism you do.  I've been diagnosed with CFS/FMS.  The symptoms feel like MS to me.  I have seen 5 neurolgists and have had numerous MRI's...brain, c spine, thoracic spine.  I've had a spinal tap, EMG and evoked potentials.  All my testing has been completely normal so I have been awarded the above diagnoses.  I do believe these syndromes exist but I am certain there is a cause.  I have read viruses like hhv6, cmv, epstein barr can cause these problem.  Why doesn't anyone check us for these things???  Not one doctor has suggested it.  There are antivirals to treat some viruses. I just don't get it.  There has to be a cause.

[396SS]

I have burning feet/hands, fatigue, twitches, stiffness in back and neck and aching all over.  It gets worse with fatigue.  I've had all the tests you mentioned Patsy, and all are normal except one non-specific small lesion (if that) on MRI that may very well be the result of my migraines.  

I got tested by a "thinks out of the box" neurologist for CMV, EBV, HHV-6, etc.  He calls it his "chronic fatigue panel" of bloodwork.  My titers were very high for HSV-1 (cold-sore virus), HHV-6 and CMV.  He put me on Famvir - an antiviral and I thought I was getting better.  This weekend, I seemed to get worse all of a sudden (stress maybe?).  I have also been awarded the Fibro/CFS diagnosis.  He said that virologists do not want to believe that these viruses could manifest anyway other than the norm (like a cold sore - which I have never had).  He did mention some very new research that found these viruses where they shouldn't be - in other tissues like bone marrow, etc.  You just have to find the right doc I think - he is my second neuro.  I fired the first one.  

Take care:)

[patsy10]

WOW!! you sound just like me.  I don't know how to find a doc that will order this stuff.  Obviously, the 5 neuro's I saw didn't have a clue. Other than the FFC which is out of pocket and very expensive, I don't know who would do this.  I've never had a cold sore either.  I wonder if my titers are high.  See, you proved my point that antivirals can be used.

[monkeygirl8]

I agree, of course there is a cause or causes for CFS even though they are not certain yet. Much of the current thinking is that there may be a number of triggers, not the same for each person, that lead to similar disease process. So perhaps subsets of CFS or renaming them once the causes are definitively linked would be a good idea.

I was tested for viruses and came back with very high levels of HHV-6. I also tested positive for EBV for two years straight. Clearly, this is not normal. I am responding very well to antivirals. I was housebound and am now working again. I'm not well, but am better.

My symptoms are in some ways similar to MS, although I thankfully do not have neuropathy and as far as I know it should not progress the way MS can.

I stumbled in here looking for a board on CFS. CFS/ME is classified by the WHO (world health organization) as a neurological disease) and has been since 1969. Someone asked -- ME is the European term, for myalgic encephalomyelitis. There is some discussion on whether that should be changed to encephalopathy as that would be more accurate, as evidence of inflammation is inconclusive or likely inaccurate.