Symptoms of chronic fatigue syndrome
Posted , 15 users are following.
I have been struggling with exhaustion for over a year. It started with pain in my jaw and face. I broke out with a herpes blister which turned into a secondary infection. I treated it with Valtrex but every time my face would start hurting the blister would return. The symptoms associated with the outbreak were sore glands in neck, arm pits and groin with low grade fever and flu like symptoms. After a few months it all went away. A new symptom emerged and it was awful. I developed intolerance to diary products and shortly after I developed chronic diarrhea with colon spasms. I would have severe bouts of this tree or four times a week and when they occurred I would visit the toilet 30 plus times and the majority of the time i would pass nothing. It was like dry heaves on the reverse end. Then after a year it just disappeared. During this time the fatigue was progressively getting worse. The came neurological symptoms of being off balance, walking into things, extremely tired and a new excruciating headache showed up. Went to a neurologist who did 2 MRI's one of head and one of neck. I told him about the weird head pressure and my balance issues but both MRI's were clear. He ordered blood work for Lyme disease, heavy metals, celiac diseas, thyroid, cancer you name it. The final diagnosis was B12 deficiency. My doctor started b12 shots bi-weekly and the first two shots brought relief for the biting and tingling in feet and hands and my balance issues have almost completely disappeared. Doctor redid blood test and b12 at 1270. So during the next three months things have become worse and not better. My fatigue became so sever that I had to drop out of my masters program. Whenever I started doing my work the mental fatigue seems to create extreme physical exhaustion and headaches. I would forget what I just read and would get very stressed because my mind wasn't working the way I knew it should. It would take days to recover physically from doing my course work. I quit my job for 30 days in hope that maybe I was just doing too much but after 30 days of just taking it easy and spending the majority of time in bed I just felt like my body was just not recovering from what I did the day before. I returned to work and do my best to get through the day. It is difficult and concerning. I take several breaks a day and my lunch break consists of me lying down in the back of my SUV. If I stand too long in one place the physical fatigue starts and is overwhelming. One day I thought I just need to push through it. It was the worst mistake I ever made. I thought a shower would help alleviate the symptoms but when I got in the shower things got much worse. I tried to lift my arms up to wash my hair but it felt as though my muscles have been completely exerted like I had lifted weights all day. Then my whole body began to feel the overwhelming exhaustion. I crawled out of the tub and laid down on the floor because I just did not have the energy to move one inch. I was terrified my mind a little foggy but I thought to myself my body is dying, literally dying. I didn't have trouble breathing but I knew with every breath I took It was demanding more energy than I had in me. I felt as though from my neck down that my body was wrapped up tightly in a wet sheet and I couldn't budge. Since this experience scared the daylights out of me I knew it was time to take it easy. My doctor ordered or bloodworm T3 and T4 , cortisol and MGravis disease. Everything came back normal so my doctor referred me to a rheumatologist but they cannot see me for 6 months. I am very concerned that I will not be able to hold down my job for much longer. Every day is a struggle and my employer is getting upset that I am continuously taking breaks and cannot keep up with my work load. My question to this board is could this be chronic fatigue syndrome? My doctor just told me she doesn't know what is wrong and maybe we will never know. Please I need help with this issue. It isn't that I don't take pleasure in things it is just that the exhaustion prevents me from doing even the basic things in life
3 likes, 43 replies
heidi86995
Posted
I live in the state of Florida. I have insurance but was told the area has a shortage of rheumatologists and that is why I have a six month wait. I have had a complete lab work up from thyroid to Mia thesis gravis to cortisol and everything in between with normal or slightly low as a result. My doctor told me she doesn't know what is wrong so sending me to rheumatologist who can hopefully figure out what is going on. The reason she sent me to this specialist is my thumb joint swelled up and was killing me but I have pain in all my joints that are random but can be very painful. My joints hurt and my muscles ache and are weak. Hoping this all get figured out soon
jackie00198 heidi86995
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There is a renowned ME/CFS specialist in Miami: Dr. Nancy Klimas. Her phone: (954) 262-2850. I realize you may live far from Miami and may not be up to traveling. When I was first ill, I actually went to Asheville, North Carolina, to see a prominent specialist there: Dr. Paul Cheney. I live in Los Angeles. If there is no rheumatologist in your area that's available until 6 months, what about seeing an infectious disease specialist knowledgeable about ME/CFS? Many people with this illness do have joint pain, so your joint issue could be a result of the illness. For more information about symptoms and ME/CFS in general, go to the "solve me/cfs initiative" website.
heidi86995 jackie00198
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on Monday. I pray I get a diagnosis soon regardless of what it is. Thank you for the information
phillis55984 heidi86995
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Yes! Our systems can handle just so much stressful stuff in our lives (good and bad stress) and then something can come along, anything from a bad cold to a problem with a family member or a rotten problem like herpes--just about anything that is the extra something that wipes out what reserves we have. At least that's the way I understand it from what I've read. Also, some people believe CFS has its own virus or "bug" of some kind. Darned if I know. But, yes. CFS is a possibility. And, I hope you can have a series of exclusion tests done to rule out anything else that could be the cause. Good luck!
dee53012 heidi86995
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Have you reasearhced myositis's. Muscle diseases.
Your symptoms are very similar to what I had. Later found out I have polymyositis, Raynauds and Celiacs. It is safe to say you had your iron tested?
When you were tested for celiacs, did they do a colonoscopy and the blood work? SOmetimes the bloodwork is not accurate. If you had all thoses tests and they were neg., you could still have a gluten intoolerance.The only way you will know if by eating gluten free for a couple months. Gluten intolerance causes the same symptoms as a person with CD only they don't get the damaged villi. You likely know this, but having 30 toilet runs will cause dehydration, vitamin, and mineral deficincies. It is deadly.
Hope you figure this out soon! I feel your pain 😭 and fear.
dee53012 heidi86995
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clivealive dee53012
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I know the feeling Dee.
What I do is block and copy my reply before sending it and if it is "moderated" save the text to "Word". Then I can alter any unusual or long words.
dawn94288 heidi86995
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Hi Heidi,
My answer to your question would be, "Yes, this could definitely be chronic fatigue syndrom". When I was reading about your symptoms I felt like I was reading about myself, except that my headache problems have been migraines rather than cluster headaches. And of course my heart went out to you. Beleive me, there are many people on this site who know how it is to be overcome by that amazing heaviness where you can hardly move your body and you feel like your body must be about to die because there is no life force left in you, plus all the other things....It still astounds me what this illness can do to me. Have hope though, you can get a lot better. But you do have to be easy on yourself. Personally, I had to quit even my part time job and let my family do more.
Just FYI, I was diagnosed with both ME/CFS and with Fibromyalgia and I would not be surprised if this is your diagnosis as well. I have heard a statistic that 70% of those with ME have Fibro. Although, there is a ton of confusion among medical personnel concerning what ME even is.
I'm willing to share what has helped me if you are interested. As of right now, I need to rest.
Dawn
heidi86995 dawn94288
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dawn94288 heidi86995
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I can address the diarrhea issue later. I am so thankful to have my stomach under control! But, I wanted to say that many patients are helped by thyroid hormone supplementation, even if they seem to appear within the normal range when they are tested. This was the case with me. It is the single greatest helpful factor for me. I have read about this in more than one book. You can also google information about it. I will private message the name of one of the books.
Take Care,
Dawn
heidi86995 dawn94288
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heidi86995
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Update. I seen the rheumatologist on Tuesday the 6th of December. He diagnosed me with fibromyalgia, OA and possible CFS. He requested an x-ray of my hands because the pain is intense and they are beginning to look deformed. He said the OA must be inherited because of how aggressive it is. He ordered lab work which is CRF, RA and Hep C. I see him again on January 3rd for a definite diagnosis. He was requesting all lab work from primary and neurologist as well as the 2 MRIs. He said after reviewing all of those and his blood work he will be able to diagnosis me. I also have an appointment with an infectious disease doctor on the 22nd of December to see if they can figure out what is going on. I figure it couldn't hurt to have another point of view. I feel so awful. I keep pushing myself everyday. I have to work or else be homeless. It is so difficult to get through the day. When I get home I go straight to bed and don't get up until the next day for work. The weird pressure in my head, the sore neck where your head meets your neck is excruciating and the pain behind my eyes. The body aches the joint pains, muscle aches and pains along with weakness are beginning to really take their toll. I am hoping I can keep going until January the 3rd when I see him again. Anyone else have cognitive issues? I find myself trying to remember how to spell words I know I know. I get confused easily and just the other day my daughter and I went to the grocery store. I went in before her because I was feeling fatigued and wanted to get in and out. I turned around and saw this lady walk past me and I said to myself, my god she looks so familiar but I just cannot think of her name. After a few minutes of following far behind her it hit me, she is my daughter. I was terrified that I could have forgotten for one minute who she was.
Ladyliegh heidi86995
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So sorry you are having to deal with all of these symptoms. It does sound like ME/CFS, especially the severe exhaustion & brain fog. When I forget something obvious, I call it a "Brain Fart". Seems that suits it.
B12, it may be different now, but I think the quick dissolving B12 works just as well as the shot. I take 1 5000mcg every day, it helps some. Stress is a major issue with ME/CFS, it makes everything worse. Prioritise what is most important & let go of the rest. If you do have ME/CFS, pacing yourself is the best option. You learn to manage life differently, but avoid getting frustrated with yourself, it will only make thing worse for you, no matter what you have. Baby yourself, avoid negative people, they take more than they give. When I cook, I put some in the freezer for days when I can't. I hope you can get some help with your symptoms & ease your pain.
When I was first sick with ME/CFS, I actually crawled upstairs to my bedroom, because I couldn't walk. I spent weeks sleeping on my sofabed, unable to function I was so sick.
Never push yourself, it will make you sicker. Know that you aren't alone, forums like this can help you navigate this awful disease.
Beverley_01 heidi86995
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Hi Heidi,
Thankyou for updating us all. So sorry you are suffering like this. It is hard to see a light at the end of the tunnel with this condition but, you are on your way towards a diagnosis which I'm wondering, will that help you to get disability welfare? You know how ill you feel, just sometimes you need it in black and white.
Beverley
clivealive heidi86995
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heidi86995 clivealive
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heidi86995 Beverley_01
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It isn't even about getting disability. It is about getting medication or any other therapy that would alleviate these symptoms.
heidi86995 Ladyliegh
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I take sublingual B12 by mouth everyday 5,000 . I try to pace myself but it seems no matter how much rest I get I just cannot recover from the day before. My rheumatologist told me that I need to exercise more at least go walking for an hour a day because of the OA but I told him if I were to walk after work I wouldn't get out of bed the next day because it is all I can do just to make sure I can get up and go to work the next day If I were to incorporate any more activities I would certainly have an attack. When this happens I get really hot and my skin get flushed I begin to feel really weak and exhausted. It progresses quickly to where I cannot even lift my arms or move. I would fall down right where I am. It would feel as though I was wrapped up tightly in a sheet and I cannot move. It feels as though I barely have enough energy to breathe. If I were to try an move when this happens I do believe I would die because I wouldn't have the energy to breathe let alone move. It is absolutely terrifying.
clivealive heidi86995
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That's ridiculous... There is absolutely no point in testing serum B12 levels once injections have started unless it comes out LOW.
The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.
In your original post you said you were benefitting from have the B12 injections and it is not uncommon for some symptoms to seem to get worse before they get better as the B12 starts to repair the damage done to your nervous system - so they should not have been stopped.
You cannot overdose on B12 as any excess is excreted via your urine.
I've stressed before and I'll repeat it again, you need to have a healthy level of Folate in order to process the B12 as it gets "used up" as the two work together.
heidi86995 clivealive
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Ladyliegh heidi86995
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I still remember (with fondness) what it felt like to wake up feeling refreshed, recharged, ready for another day. I have never felt it since ME/CFS came into my life.
They say the name CFS trivializes how bad the symptoms are of this illness. I disagree, if others could realize what it is like to never have refreshing revitalizing sleep again, they might get a clue... Fatigue is pretty constant, at varying degrees with ME/CFS.
phillis55984 Ladyliegh
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Me too. Ah--the good old days!
Beverley_01 heidi86995
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Hi Heidi,
I know you don't want to think about getting disability payments but, in your original message you mentioned your employer finding it hard to accept your need for breaks, how you have to go straight to bed when you get home etc.
Sadly so far the only cure that is offered is pacing and rest. hopefully with the diagnosis of fibromyalgia-that can be helped with medication-and cfs, you can be put in touch with specialist care. They can advise you on pacing.
Best wishes
Beverley
phillis55984 Beverley_01
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I like what you wrote: "Sadly so far the only cure that is offered is pacing and rest." From my own experience of over 20 years of living with CFS, I know this is true. I wish my family physician of many years hadn't retired. He totally understood. That's not always the case with the replacement squad. Therefore, I go to the doctor as seldom a I can. Fortunately, pacing and rest have kept me able to continue living on my own in my own home.