I am new here, but not new to medhelp. Today my doc spoke to me about CFS, after years of an unknown diagnosis- including mention of and ruling out of MS, ALS, Lupus, POTS, and Lyme. I have been through so many tests, with little explanation for my symptoms. The fatigue has leveled me and the pain and weekness in the joints of my hands, wrists, ankles, and feet has been difficult to deal with at times. This all escaled after the birth of my first and only child. Is there any link between CFS escalation post- pregnancy? How risky is a pregnancy for CFS?
My doctos has me on 10 minutes of aerobic activity 5 days/ week with a followup in 1 month. I don't want to exercise, but I know that instead of an afternoon nap, I should aim to do some physical activity. One of my sisters has a bad bout of CFS for a few years and manages it with a regular sleep schedule and physical activity and no napping- no matter how tired she is. I am absolutely exhausted- and have been severely fatiqued for over 1 year, but I made myself follow doctor's orders today. He also wants me to keep a journal for the next month on how this works. He stated that he would prefer to try to treat it this way before turning to meds.
What input can you all offer?
Thank you in advance for your help.
Hello and welcome,
I don't mean to sound blunt, but my first thought is that you might want to consider finding a new doctor. It sounds like your doctor doesn't believe that there is anything wrong with you and your problems are a result of a poor sleep schedule and lack of exercise. CFS is not a psychological illness and is proven to be much more than that. I love to refer people to Adrienne Dellwo's blog about Fibro and CFS. Please take a look at the page I posted with the link below when you get a moment. She explains some of the theories of causes of CFS. Clearly your doctor is misinformed.
You may need to seek out a new provider- one that is more knowledgeable in treating your illness, especially if you are considering childbirth. If there is an infectious cause to your CFS and your current doctor isn't acknowledging the problem, you may suffer miscarriages. Also, you may be suffering from a thyroid problem. I urge you to do some checking around. Below is another link that I have used to refer many people to find FM and CFS doctors that are friendly and understand our illness. My doctor is on that site as well.
no! not strenuous exercise! as though running around with new baby things isn't enough; now, i know it's not the same type of exercise, but fatigue is allabout how easily we tire and how slowly we recharge. you seem to know your body so if it says afternoon nap - do it!
your journal at the end of the month is going to be no surprise - it's going to show 'exhausted'!
if the dr has indicated he/ she thinks it's depression: leave that dr! that's the only reason they're prescribing the (stupid) exercise plan - they're barking up the wrong tree. it happened to me.
in terms of maintainig range-of-movement - yes -gentle stretch and bit of maintaining strength in the muscles used least in running around after baby stuff (and i don't know what those would be!).
the lack of sleep with baby schedule will be challenge enough.
yes! gentle yoga and arvo naps
congrats on new baby and take care
Thank you for all of your input and helpful information. Sometimes we need to be our own advocate and doctor to ensure best care. This includes reading up and educating myself on this condition. I am going to try this exercise program- at my level, and see what happens. My doc also mentioned meds and alternative treatment, which we will discuss at the end of this trial. Have any of you tried accupuncture? I read where this helps some. My little girl just turned 3 and I have seen distinct episodes of this fatigue with varying degrees of intensity. The joint pain is also a problem. However between episodes, I often feel much better. Each episode begins with oncreasing fatigue and weakness and pain in the joints of my extremeties, but between episodes, I feel pretty good. This has been going on for 3 years, with episodes lasting days to weeks at a time. One of my sisters has CFS and another has Epistein Barr. They are giving me pointers on what has helped them with their episodes, which helps as well.
Again, thank you for your input.
I have posted some of my past info on my profile. It has been a long road, but I am confident that better days are ahead.
How were you evaluated for Lyme? the tests are notoriously innacurate. I would not rule out Lyme unless you went to an LLMD (Lyme Literate MD) trained by the ILADS and had a western blot test from Igenex. The regular tests from regular doctors are not accurate.
Go to you tube and watch the trailers for "Under our Skin" or underourskin.com Get educated.
Symptoms of Lyme
Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see Other Diseases and Lyme...Relationship
If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.
If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.
The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.
No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.
Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.
Free Canadian Lyme Disease Brochure (a computer file for you to print)
PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )
Symptoms of Lyme Disease
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
Rash at site of bite
Rashes on other parts of your body
Rash basically circular, oval and spreading out (more generalized)
Raised rash, disappearing and recurring
Head, Face, Neck
Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy, Horner's syndrome)
Tingling of nose, (tip of) tongue, cheek or facial flushing
Stiff or painful neck
Jaw pain or stiffness
Dental problems (unexplained)
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
Double or blurry vision
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes
Decreased hearing in one or both ears, plugged ears
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears
Digestive and Excretory Systems
Irritable bladder (trouble starting, stopping) or Interstitial cystitis
Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps, (Fibromyalgia)
Respiratory and Circulatory Systems
Shortness of breath, can't get full/satisfying breath, cough
Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats
Endocarditis, Heart blockage
Tremors or unexplained shaking
Burning or stabbing sensations in the body
Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Increased motion sickness
Mood swings, irritability, bi-polar disorder
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
Too much sleep, or insomnia
Difficulty falling or staying asleep
Narcolepsy, sleep apnea
Panic attacks, anxiety
Memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration or reading
Going to the wrong place
Speech difficulty (slurred or slow)
Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain
Unexplained weight gain, loss
Swollen glands/lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Low body temperature
Increased effect from alcohol and possible worse hangover
Thank you for posting this. I counted 18 that apply, and I was conservative on checking off the items. I will certainly mention this to my doc at my next appointment, which is at the end of June. I live in a high risk Lyme area where ticks are abundant.
However I am feeling better this week. I have listed more specific information about my history on my profile. It is too much to post here. These symptoms have spanned 8 years and have had several distinct episodes that have varied greatly in duration, intensity, and symptoms. I have somewhat given up pushing anything with doctors, since they generally tend to underreact and dismiss much of the information that I present. I used to focus much more on finding a definite answer, but now I focus on how I feel and living my life the best I can. I got consumed by trying to make the doctors listen and frusterated when they didn't. I decided to focus on the things that I can control, saving myself the frusteration of dealing with the medical world. This attitude has been the best medication for me.
Thank you again for the great information that you provided.
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