Symptoms of chronic fatigue syndrome

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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

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  • Posted

    Your doctor was completely wrong and wasting her time testing your serum B12 once you started to have the injections as this is known to "skew" the result.  The only time it would be of benefit is if it came out low.

    I get the impression that your injections stopped after two shots and then she did the test.  Is that correct?

    Your taking of Valtrex could have caused a B12 Deficiency as too your tummy troubles may have affected it's absorption.  What sort of diet are you on?

    Ideally as you still have neurological symptoms you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

    Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

    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.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment Your doctor should have a copy of the BNF guidelines on her desk and she should read the paragraph which I've highlighted.

    I am not a medically qualified person but one who has had Pernicious Anaemia (a form of B12 Deficiency) for 45 years and I suggest you make a list of your symptoms, present this to your doctor, remind her how much you felt better after your two injections and ask for them to be recommenced in accordance with the guidelines above.

    I note your comment "My doctor just told me she doesn't know what is wrong and maybe we will never know." sadly this is quite a common problem that we "sufferers" come up against with our GPs and yet it is well documented in medical journals.

    Finally do you know what your serum Folate level was/is as this is essential to process the B12 and it may be you will need to supplement with folic acid.

    I wish you well and plese come back if you have any questions.

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    • Posted

      I received three months of B12 shots every other week. My results after three months of shots were B12 at1700. My doctor asked for lab work to re-check results and see if B12 is holding up. My folate was good too
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    • Posted

      The thing is did your symptoms improve having had the B12 injections and do you still have them now they have stopped?

      It's not surprising your level is high at 1700 but you cannot overdose on B12 as any excess is excreted via your urine,

      It all comes back to you being treated according to your symtoms.

      I am not a medically trained person but as I understand it according to 

      False normal B12 results and the risk of neurological damage  (U.K. N.E.Q.A.S Haematics org uk)

      In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.” 

      Perhaps that's what your doctor has asked for in the lab work. 

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  • Posted

    Hi Heidi,

    The exhausted feelings, brain fog etc yes, sound like cfs/me. Do you remember anything that triggered all this? I know you recognize the jaw pain and herpes were at the beginning of all this for you and flu like symptoms. Do you think you may have caught a virus before everything started? It really sounds like you've really been through the mill with all the things you mention. Have you still got an issue with dairy products?

    I have a friend who had post viral fatigue before they were diagnosed with cfs/me. They now get break outs of the herpes virus alot and I'm not sure if there's a link there between the herpes virus and cfs/me. From what I've noticed about this condition is that we all have our own unique symptoms as well as common ones.

    I hope the rheumatologist is able to give you some reassurance although it seems a while away before you see them. Do you have to see them before you can be referred to a cfs/me service? I know you said your doctor appears at a loss. Sometimes you have to be quite demanding and ask to be referred to such clinics, or you do in the UK at any rate.

    Hope this helps

    Beverley

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    • Posted

      I live in the state of Florida where apparently their is a shortage of rheumatologists. The only thing I remember before all of this started was a stomach bug I had for two days a few weeks before all of this started. I am still lactose intolerant. The thing I fear the most is getting sick. The way I feel now if I were to get the flu I couldn't imagine surviving it. I am already to weak.

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    • Posted

      Hi Heidi,

      I appreciate how you feel regarding getting sick but, if it is cfs/me, many people on her feel that they don't get sick? Possibly because we have other symptoms the rest of the time and seem to constantly be battling other things. Since getting cfs/me I constantly get a red hot cheek and ear-the often go visibly red and are red hot to the touch-like when people have a fever. Lasts sometimes only an hour and I sense it's my body trying to work on what It believes is something bad? My friend with the condition also gets it but just in the cheeks sometimes. Most unusual condition. Must admit, I too have worried about what if I get really ill but, I've had this four years now and haven't been as yet and have been around people with flu etc. I get flu like symptoms though alot and they don't go to full illness. Hope that is somehow reassuring.

      I wonder if the stomach bug was a trigger for you. With cfs/me their tends to be a trigger. Viruses are the main one it seems and people seem to get the post viral fatigue first with this can lead to cfs/me for some people.

      There is definitely clinical definition differences between the UK and USA. I haven't seem a rheumatologist in the nhs here and was referred directly by my doctor to the cfs/me clinic when my blood tests came back negative. I had a query on blood sugar as was too high so was sent for a diabetes test first which came back negative. Here, all tests have to be negative before the cfs/me clinic can see someone.

      I hope that you can get to see someone knowledgeable in cfs/me at infectious diseases as Jackie has said. Also, a condition called fibromyalgia can be triggered like cfs/me and has the pain side to it (have a Google to see if it fits) cfs/me also has pain with it and often don't seem to have a root cause. A neurologist told me that our minds can send pain messages that cause the muscles to tense which in turn causes pain? Swelling is a different thing I appreciate.

      Let us all know how you get on on Monday.

      Beverley

      Beverley

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    • Posted

      Hi Beverly like Clive i think i may have CFS. I had Maleria 3 years ago and ever since then im always tired. Last year i was paid off from a job as my employer said i wasnt paying attention to my work and was missing things it was an admin post in childcare so really important not to miss booking appointments, which i was doing you can tell me something and 5 mins later ive forgotten it i went to the doctors as i thought i had dementia im 50.they tested me and said i was fine. Since then i have a new job but my memory is not good i have to write everything down so i remember it. Im tired but cant sleep i take frequent headaches sore throats and have an aching right shoulder and sore feet most of the time. I googled my symptoms and came across this forum im now thinking of going back to the doctor to ask for help as most days i could sleep at my desk and i feel stupid when asked a question yesterday i couldnt get my words out and said it wrong. I live in the Uk and dont know anyone else with this condition my husband works abroad so he doesnt notice me getting worse but i know i am even walking the dog after work tires me out now we used to go out for an hour now hes lucky if he gets 30 an hour
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    • Posted

      Ask to have your serum B12 and serum Folate (B9 aka folic acid) tested if for nothing else but to rule out a deficiency in them for the cause of your symptoms.

      B12 deficiency is often missed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many B12 deficient people have so-called “normal” levels of B12.

      I wish you well.

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    • Posted

      Hi there,

      Me too re memory and the jumbled words etc. I'm lucky in that I have a friend who also has the condition post virally and I also have another friend whose partner got cfs/me from malaria. He is better now-as in no major cfs/me symptoms. A very strange condition it is.

      I too live in the UK. Depending on where you live, there are specialist clinics that can help. As you say, a trip to the doctor may be in order as in the UK, to get a diagnosis, you need to have 'Normal' results in blood tests. These include testing for diabetes, b12 (I believe), iron-things that cause lethargy basically. After this, a referral to a specialist cfs/me professional can be made

      Hope that helps

      Beverley

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  • Posted

    I'm so sorry you're suffering from such exhaustion. And yes, it could be chronic fatigue syndrome (now known as ME/CFS). To be diagnosed with ME/CFS, you need to have bloodwork done to rule out other illnesses. I would hope such bloodwork was done within the last year. Assuming it all came back normal--yes, you need to see a rheumatologist or infectious disease doctor for a diagnosis. Six months is way too long. I assume you're in the UK? If so, is there any way you can go outside the NHS and see a specialist privately? I understand the financial burden, but I assume it would be a great relief to at least have a diagnosis. A diagnosis could perhaps allow you to access some financial support from the government. I was able to do that here in the U.S., getting on Social Security disability. I don't know how the system works there in the UK, but others on this forum could help you. I can't tell you how many posts like yours I've seen on this forum. Again, it's impossible to know from your post if you, indeed, to have ME/CFS. But it's certainly possible. Over the years, I've seen that there seems to be many pathways into this illness, including getting a virus or infection, or some other assault on the body physically. That physical "assault" is often accompanied by some kind of stress, which catapaults the person into ME/CFS. In my case, I got a virus--ironically, from my own father, who unfortunately came to visit me while he was ill. I was under stress already from a condition called cluster headache. It all proved too much for me. The virus never went away, then developed into full-blown ME/CFS. I initially, of course, like you, didn't know what was wrong with me. It was very frightening. I was so exhausted I couldn't lift my arm up. I went to two GP's who told me it was all in my head. One said I just needed a vacation. After 3 months of this, I went to a specialist at UCLA, who diagnosed me within 20 minutes. There is no cure for ME/CFS, but some symptoms can be treated. For instance, if you've developed sleep issues, like many of us do, you may find either a non-drug approach (like meditation) or a drug approach can help. People can get better from this illness, even without doing anything. The best chance to get better happens within the few few years after diagnosis. So in case you do have ME/CFS, it's important that you take it very easy, pace yourself, and don't push yourself to exhaustion. That could lessen chances for recovery. Stay within your energy envelope. I really feel bad for you.

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      I was also diagnosed with cluster headaches. The pain unbearable and excruciating. Some nights I sleep through the night other nights it is broken sleep and other nights my body feels wired but I am exhausted. It is difficult to make sense of it all. I told my doctor that I feel like a crazy person because I keep making appointments because of these strange symptoms that evolve continuosly on their own. I personally feel like she thinks I am making it up but in no way did she ever tell me I was in fact her explanation is their are things that even medicine cannot answer.
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    • Posted

      Well, ME/CFS is a complicated illness, but a knowledgeable doctor can make a diagnosis. There are so many symptoms, as you've noted, that can come with this illness. But rather than go chasing down each symptom, it's much more fruitful to see one specialist who can determine what's causing all the symptoms. Again, I think an infectious disease specialist is a good place to start, because your symptoms sound suspiciously like ME/CFS. As for the cluster headaches? You're the second person I've met on this forum who has clusters and (possibly) ME/CFS. Are your clusters under control? I assume you know about inhaling oxygen to abort a cluster headache. Or using Imitrex? Also, to prevent clusters, Verapamil is very effective, or beta blockers. Depending on whether you have episodic or chronic clusters. 

       

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    • Posted

      My doctor introduced me to a new medication. I do not remember the name of it but it is given in a shot. She told me she could show me how to use it and gave me an injection which helped within minutes. However, it is pretty expensive so I opted to stick with meloxacam. It does take a while to work but if I take it at the first sign of this headache it prevents the worst from occurring. I wouldn't do oxygen because of the hassle with insurance. I certainly hope the infectious disease specialist is familiar with CFS just in case that is what is causing my symptoms. I do not want to have to walk away without a diagnosis. I have been sick for almost two years and everything is getting worse at first ithe fatigue was more an annoyance but progressively became the most prominent symptom.

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    • Posted

      Please let us know how you do with the infectious disease doctor. Before making an appointment, you may want to ask if he deals with ME/CFS patients. Not all doctors are equally knowledgeable.
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