Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Is This CFS?

Discussion in 'General ME/CFS Discussion' started by Vigilante, Aug 2, 2014.

  1. Vigilante

    Vigilante

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    Hey all, just looking for some opinions with ongoing problems that stretch 2 years now from onset.

    I began my long list of symptoms with headaches around my sinus/eyes area which started september 2012, these were constant low grade tired like headaches that were not relieved by any painkillers, I remember the initial onset lasting 12 weeks solid and I also felt like I had brain fog/dizziness during this time.

    It is quite hard to remember after that the order in which other symptoms and sensations appeared but here are the list off the top of my head:

    Headaches: come and go over the past 2 years but when here remain so for a number of weeks.
    Eye ache/pain/fatigue
    Brain Fog
    Lightheadedness
    Dizziness
    Increased Saliva
    Increased Sweating: which seems to be due to intolerance to heat.
    Night Sweating: same as above.
    Burning Sensations in my hands and feet
    Tingling skin
    Itching
    Pins and Needles: mainly at night and of my hands when sleeping in one postions for 20-30 mins
    Speech problems: like saying the wrong word at times.
    Memory Problems: sometimes being forgetfull, like not remembering my bank card pin code.
    Increased Allergies: I either take anti-histmine or deal with allergy symptoms all year round.
    Unstable Blood Pressure: since around Feb 2014 has been unstable like going from 140/90 to 165/115.
    Sleep Disturbance: Difficulty falling asleep and staying asleep.
    Hot Flushes
    Fatigue


    Some of these symptoms come and go and do not seem constant.

    Feb 2014 I developed further headaches and dizziness which lasted around 2-3 weeks, I was given Co-Dydramol by my Doc which did not really cure the headache, I also at this time developed red hot flushing of my face/neck/chest which was dry flushing and lasted hours/days at a time.

    My blood pressure was checked at the Docs office and it was 165/119 or something around that level, I was made to home test for a few days and then placed on an ACE Inhibitor which did nothing to lower my BP and then was given a Beta Blocker which lowered both my bp and heart rate. (my heart rate was never elevated above 72 when my bp was that high, on the beta blocker my heart rate was 40-50)

    I began to develop fatigue while on the beta blocker, a fatigue I have never experienced before, some days I was struggling to walk for 5 mins around to the local shop, I usually cycle everywhere and had no problems cycling uphill prior to this fatigue starting and found I could also not cycle uphill I actually forced myself to do so on one occasion and had major muscular thigh pain for around 1 week after. I was told by my doc I had some form of Myalgia (sp?) Indeed cycling is still an effort on any level of surface still now.

    I took myself off the beta blocker and ace inhibitor because I believed they were causing the fatigue, but its not really improved since, some days are better then others but over the past week I have again been exhausted.

    I have had many lab tests done but I wont bore you all with the numerous normal results that have come back, the only abnormal test results are Serum Vit B12 - which has tested too high on 3 different tests and Serum Immunoglobin A (igA)

    Ruled Out:

    Luekemia
    Lymphoma
    Diabetes
    Coeliac Disease
    Thyroid
    Cushings Syndrome
    Phaochromocytoma
    Anemia
    Liver Disease
    Kidney Problems

    My docs refuse to chase up the high b12 any further, I know it should not be high like it is and I did not take any vitamins at that point in time, the only vits I take currently are:

    Magnesium 250mg: which seems to ahve stopped my headaches since starting that 3 months ago,
    D3 - 2000iu
    Vit C 1mg

    Anyone got any ideas?

    Cheers
     
  2. deleder2k

    deleder2k Senior Member

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    Do you experience post external malaise (PEM)?
     
  3. SOC

    SOC Senior Member

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    You might want to look into some form of primary orthostatic intolerance (OI) and methylation disorder (could cause high blood levels of B12 and folate with insufficient amount being used for body chemistry). You can learn a bit about OI here and try the Simple Test for Orthostatic Intolerance given on that page. You might also want to make sure your doctor has fully evaluated you for cardiac conditions that would cause fatigue and blood pressure problems. These conditions can exist independently, or in addition to, ME/CFS. In either case, if you treat them you might feel better.

    ME/CFS, however, is not just OI, methylation disorder, or cardiac conditions. A diagnosis requires other symptoms as well. You can read the International Consensus Criteria here to try to figure out if you have ME/CFS and try taking that paper to your doc if you think you do have ME/CFS.

    Note that one required symptom of ME/CFS is post-exertional malaise (PEM), called post-exertional neuroimmune exhaustion (PENE) in the International Consensus Criteria. Note that this is not simply fatigue after exercise. There is an exacerbation of flu-like symptoms after exercise.
     
    Valentijn and deleder2k like this.
  4. Vigilante

    Vigilante

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    I am unsure if I have that or not, I do know my muscles fatigue far easier then ever before, I used to go to the gym weight lifting 3-4 days per week, my legs were my strongest body part and I was able to squat 200kg now a simple bike ride will give me muscle fatigue in my legs for days, maybe even one week.

    I do not have stamina at all, cannot swim more then 1 length or a pool without resting.

    Also I can add that since this started in 2012 I had a massive increase in Sinusitis, Allergic Rhinitis, sneezing, eye itching, mouth itching. I have been on Anti-bs numerous times in the last 2 years for Sinusitis.

    Also before the onset of these symptoms in 2012 I had been to sleep in the chair at my parents house after a gym session and had woken up with virus like symptoms, which lasted 2-3 weeks and I was never the pre-virus version of me since then.
     
  5. SOC

    SOC Senior Member

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    If you feel you have eliminated primary dysautonomia, which could be causing your fatigue, then your next best step is probably to go see a top ME/CFS specialist. Depending on where you are in the world, that can be fairly easy, or quite difficult. In the US there are top specialists in few of the major coastal cities, and a couple in the West. If you are in the UK, you'll probably have to go out of country. If you are willing to tell us where you are in the world, someone in your area might be able to suggest a top specialist not too far away.
     
    merylg and justy like this.
  6. Vigilante

    Vigilante

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    I am from the UK.

    The Methylation problems have interested me for sometime, I did google alot after getting the blood work showing high B12, even tried talking to my DR about this but its like banging my head against a brick wall. Every condition know to cause excess B12 that my Dr and blood specialist know of have been rules out. I even got called a medical "anomaly" by my Dr....

    I take it there is a pretty good possibility that the high b12 is actually inactive and pooling in my blood and I am not converting it to an active version to use in my cells?

    I did try and take a mega-b complex for around 2 months but found no benefit at all, but on checking the label I see it was Cyanocobalamin not Methylcobalamin.

    My gut feeling tells me to take sublingual Methylcobalamin and MethyFolate to see if I get any improvment.
     
  7. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    With all your allergy stuff, I think you need to get mast cell disorders ruled out, you may have this going on, or even something like systemic mastocytosis. Those with that get exercise intollerance too and lots of different symptoms. Many with this also get unstable BP and can have swinging and reaching quite high levels (my uncle has masto and he his goes high) or ditching.

    Thou with your mention of "viral like symptoms" it does also sound to me that you could ME too. Your high B12 as the other said could be showing an issue in your methylation cycle. (Fredds one of the most knowlegable here for that).

    Anyway, try to get tested for mastocytosis or mast cell disorders (or it could be something like mast cell activation disorder going on), secondly try to get a tilt table test done. I see both those things are quite important for you to do.

    It may be a good advance warning in case things go really wrong to check the following which I think you should familarise yourself with (this is also example of bad masto flushing, very important to get this diagnosed if you do have this as it can be life threatening http://mastcellhell.com/anaphylaxis/ana-photos.php
    ...........................

    I have hyperadrenigic posteral orthostatic tachycardia syndrome (POTS) (I think I spelt first word wrong) with this form of POTS, the BP can go very high. To bring mine down, when I get in a crisis with it or collapse, Im at that point given saline IVs to help me recover and lower my BP back down to its normal level. These BP spikes in this issue is usually treated by a drug called clonidine (a high BP drug but one which works only by lowering adrenaline as it is adrenaline spikes which cause the BP to raise in this issue.
    Im not saying that is your BP issue but it may be.

    If you have a tilt table test they will be able to figure out the various dysautonomias you may have if it is this with the BP varying so much.

    Have you got ME? Well I'd say, maybe not, its hard to say. You not know if you have post exertional fatigue (which is a delayed reaction). Also with your all other allergy, there may be another cause for your issues.

    I strongly suggest to try not to allow any doctor to label you yet with ME/CFS (as then tests are discouraged!) and instead try to see someone who specialists in mast cell issues to try to be sure that is rule out.
     
    Last edited: Aug 3, 2014
    WillowJ likes this.
  8. Vigilante

    Vigilante

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    Thanks for the suggestions I will look into them more, I did see that mast cell disorders are listed to have episodic symptoms, while my symptoms do not really seem to happen in bursts, I always have something wrong in one way or another.

    The more I research the Methylation Cycle the more it seems possible, I have read there is a link to Autism? My younger Brother has Autism/Aspergers Syndrome.

    Wondering if I have MTHFR.
     
  9. SOC

    SOC Senior Member

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    Not a good place to get medical (as opposed to psychiatric) care for ME/CFS. :(

    Definitely worth a try under the circumstances.

    Me, too. Doctors in the US can run a test for that -- I don't know about the UK. You can pay privately to have that, and much more, tested by 23andme. I think Dr Myhill's genetic testing also includes MTHFR. UK members will know more about that then I do. :)
     
    Last edited: Aug 3, 2014
  10. caledonia

    caledonia

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    Cincinnati, OH, USA
    The serum B12 test is useless, unless it shows low. Your B12 can be normal or high and you can still be deficient.

    MMA and transholocobalamin are supposed to be better tests.

    You can also look at cobalt on a Doctors Data Urine Essential Elements test (mine is below detection limit, while my serum B12 is a nice normal 800). I have many B12 deficiency symptoms.

    I believe there is some connection between OI and methylation and mast cell disorder and methylation, but I haven't looked at it deeply.

    I have many links for methylation in my signature. There are also two excellent articles on B12 deficiency by Chris Kresser.
     
  11. Vigilante

    Vigilante

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    Thanks I will check some of these links.

    I don't know if this will prove of any interest to anyone but I also have whats called Keratoconus, basically autoimmune condition that effects the cornea's and makes them go thin and lose shape, at present I'm waiting for an operation on my left cornea.

    Keratoconus is linked to Autoimmune, Allergies, downs syndrome.

    I was just trying to google keratoconus alongside MTHFR mutations.
     
  12. Vigilante

    Vigilante

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    Went to see my Doc again about this, basically got elbowed away with, "we will test b12 for the 4th time" "we will talk to the blood specialist again after that" "we think your fatigue is from anxiety and your high b12 means nothing"
     
  13. Vigilante

    Vigilante

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    Well, if anyone can work out the riddle.

    It's been 3-4 days since I stopped the Mega B-Complex and I feel better while not taking that, better energy, less tired then last week and also my Blood Pressure has returned to figures around 130/84, its been at 150/100 for the past few weeks.

    I know that B12 in it was cyanocobalamin and the folate was folic acid, both inactive forms. In theory they should not make a person feel worst if they did not have some kind of problem?

    The only other thing I have been doing any different is fasting from night untill lunch the last two days, and trying to make sure none of my food intake contains wheat.

    Vitamins right now:

    Holland + Barrett, Vitamin C - 1,000mg, Effervescent - Switching to Solgar, Vitamin C. 1,000 mg soon
    Holland + Barrett, Magnesium 250 mg
    Holland + Barrett, Vitamin D3 3,000 IU - switching to Solgar, Vitamin D3, Cholecalciferol 5,000 IU soon
    Sea kelp/Iodine - 150ug

    I just had Solgar, Metafolin, 800mcg arrive but should I not attempt to try this alone without the B12? waiting for Jarrow, Methylcobalamin, 1,000 mg to come.
     

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