Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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My story so far ...

Discussion in 'General ME/CFS Discussion' started by woollypigs, Mar 10, 2015.

  1. woollypigs

    woollypigs

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    Hello

    My partner and I had to stop our trip of a life time, while cycling in New Zealand and cut our tour short because what happened to me. Shooting, constant, throbbing pain, just like when you hit your funny bone, from my fingertips on both arms, to my shoulders.

    Numbness, pins and needles in hands and arms and the lack of feeling. If I was holding something, say a glass, I could see I was holding a glass, but I couldn't feel if I had applied enough pressure to lift the glass.

    Here is a rundown of how my symptoms have changed:

    November/December 2012 - October/November 2013

    - Severe numbness, pins and needles, pain like hitting my funny bone shooting from fingertips to shoulders.

    - Any vibration causes pain to flare up.

    - Can't for a few hours in the morning make a fist without extreme pain and using all my muscles and strength.

    - Can see I am holding a glass of water but can't feel if I have applied enough strength to lift the glass.

    - I also had extreme pain in my arch of my foot and up the lower leg when standing up in the morning impossible to walk without the fear of falling, a bit like plantar fasciitis, but the pain subsided after 40-60min moving. Pain came back if resting, say watching a movie, reading a book.

    How I managed it and what happened:
    I tried painkillers, more rest days and a different set-up on my bicycle - nothing we did made it better. Even pushing a shopping trolley around caused extreme discomfort, numbness and impossible make a fist for 20-30min after.

    When we rented a car so we could go walking and I could be the support vehicle for my partner so she could continue cycling. The vibration on the gear shifter and steering wheel set off the pins and needles.

    We went to our GP as we arrived back in the UK in Feb. 2013, who then sent me to various specialists and after long waits between appointments, we have yet to find out what is going on.

    Carpal tunnel syndrome or damage to the ulna nerve it is not. I have had three nerve conductions studies done and there is some damage to the carpel tunnel on my left hand, but not enough to cause the rest of my symptoms.

    I have had a full body MRI scan done, focusing on my brain, neck and my spine. This only showed normal wear and tear to a 40+ old person, to the neck area - T1/C7.

    I have had blood test to see if it could be - Lyme disease, MS, low B vitamins or lack of iron etc. They all came back negative for the doctors. No sign of diabetes, thyroid or the like - I really got the doctors baffled.

    September 2013 - March 2014

    - Numbness and pins and needles less than before but still painful.

    - Fear of lack of grip. Don't have the last turning 'oomph' to tighten things, e.g. bolts.

    - Not sure I am holding tools or objects enough to use them or lift them.

    - Can feel sharp pain at joint points: wrists, elbows, shoulders, where nerves go, but not really pain in muscles.

    - The pain in feet totally disappeared after taking 2 antibiotic pills for middle ear infection. Even GP was baffled.

    - Was given Amitriptyline for the pain, but it made me sleepy, dizzy, slurring words, talking nonsense, stopped taking after two pills. Felt like I was high on bad drugs.

    How I managed it and what happened:

    I had a second MRI scan on my neck area to see if it was the brachial plexus that had been damage but the second specialist said it was not.

    I have asked if pilates, yoga, swimming or physio would help. The consultants and specialists just shrug their shoulders and said they didn’t think it would harm it, but it will not help it. From what I have heard from friends who have done so, they all feel happy and better after a few sessions.

    Though I'm dragging my feet, because every time I work, do cleaning or DIY or just stay up late chatting to a friend, I know I will suffer the next day or longer. Both from the extra moving about/exercise and that when I'm tired I will sleep deeply and don't move around when my arms starts to hurt.

    The good news is that I do normally sleep lightly and wake up every time I feel the tingling in my hands and turn around and shake some blood/life into my fingers and hands.

    March 2014 - present day

    - Numbness and pins and needles slightly less.

    - Extreme exhaustion. Totally drained for a couple of days after a days work.

    - Have to think about breathing when very tired, the upper chest is constrained but not wheezy.

    - Physically and mentally drained. Had "micro-goosebumps" -- fine static tingles, not visible -- coming from my arms, going up to head and down my back.

    - Hot flushes with goosebumps and I feel dizzy and extremely exhausted, nearly fainting and it is draining mentally to concentrate or do things.

    - Aching, muscle exhaustion moving from arms, to neck, running down back and into legs over a day or two.

    - I have to really concentrate to be able to move my limbs.

    - Painful swollen fingers and hands in the morning that takes a few hours to go down.

    - In the last few months the extreme pain in my feet has come back, especially after two days off work, and standing up after rest, pain slowly subsides after half a day’s rest.

    - When it is bad, after 2-3 days work, where I normally should be 5/6 out of 10 tired, I’m 10. It is even painful to do basic personal care. Scared of taking a shower, since I’m so weak and not 100% sure of my legs.

    - Dropped two bowls into another and broke all three when washing up the last time, no grip.

    - Last extreme exhaustion episode after working took three days to get over.

    - Waking up every day with the feeling that I'm about to come down with a cold. Blocked nose and sinuses. Feeling went away after a few hours. Started to take turmeric, 500mg, now don't wake with the cold coming on feeling.

    - Sore feet all day, worse when tired. Like the pleasure/pain feeling you get when you have been on your feet all day and you take your boots/shoes off.

    - Inner and outer ears are extremely sensitive to cold. So bad that I’m thinking about covering them when taking the trash out, 10metre round trip, on cold days.

    - When very tired/knackered/fatigue I struggle with speaking at normal speed. Have to slow down to make sure that I don’t stumble over the words.

    How I managed it and what happened:

    I had an asthma test, since I struggled with breathing when very fatigued. I really had to think about how I took a breath, if I didn't, I felt out of breath like I had just run hard. I got the all clear there.

    The good news is that the shooting pain like a hit of the funny bone, has nearly gone away, when I don't work. I sometimes work in a local bicycle shop and the boss there has been very good to me, letting me have days off to go to all the tests and appointments I have had. Which I haven't done since Nov. 2014 because of low season. The pain is there when I do work.

    Sadly putting in two days work means that the rest of the week I’m out of the count, resting. Which just ruins my time together with my partner.

    The last two really bad events, while working 2014, have had very sore swollen fingers that took a day to go down. To get "fully" recovered. e.g to get to a place where the problem isn't causing me any debilitating pain or tiredness takes up to three days.

    The more I work I do and tired I feel, the more I have to concentrate and double check what I do. I can't trust my grip on the tools and fear that they will slip and damage the object I'm working on. I really don't have the "oomph" to just give that bolt/nut that extra turn to make sure it stays put. This drains me more and therefore I have spend more time to think about simple day to day things, lovely vicious circle.

    The bad news is that numbness and tiredness (like after a day digging your garden up after neglecting it for a few summers, but ten-fold, that totally drains me and moves from my arms to my upper back then lower back and legs) is still there.

    The last few months we (the doctors and I) have become sure that I'm suffering from mild CFS/ME (Chronic fatigue syndrome/myalgic encephalomyelitis).

    Though no explanation as to what started it all or the cause of the pain which is still there.

    Other than that my nerves and immune system had been kicked into a panic and they are over reacting - by something which probably have gone and left by now - and I stuffer "pain memory" from that.

    I have figured out that, if I have a day off before an event - work or say a long walk - and a day off after, I feel OK.

    And I really mean proper days off. So no little house chores or hobbies, just sitting around. On bad days I can just about concentrate enough to watch a simple movie.

    Which sadly kills the spontaneity of just popping out for a walk, shopping or going to a cafe to visit friends.

    For example: A gentle swim in a local river last summer, less than a swimming pool length, with no current to speak of.

    It was a beautiful hot day and we wanted to have have a swim with our dog. That set me back three days, where the most exciting thing I can do is nothing.

    As one of the medical people I have meet said - how much does it cost? Would it be worth the "expense" doing X before doing Y. Is it ok for me to be a bit tired while doing something, would it drain me totally and do I have enough time to rest before I do something new?

    The worst part is when I spend too much and hit the wall/ceiling, is that it takes a long time to save it up again.

    I find that if I have a rest the same length as the event will be, before and after I can just about keep going through the day without suffering too much.

    So a typical day, when I’m not working is: get up walk the dog 30-40min, rest 30-40min, then rest for say 30min because I need to the washing up, wash up, rest for 30min, then rest for 60min because I need to do the shopping, do the shopping, rest for 60min after shopping...

    Keeping active for up to 1.5-2 hours is my max in a day, without a break. If I go longer and don’t rest enough, I need to take out of my “savings” for tomorrow’s energy.

    A few weeks back we did a 1.5 hours walk and straight after went shopping. That meant that the following day, half of it was spend on the sofa doing nothing, because I went into the red.

    I found that when I’m between 100-80% energy level I’m doing ok, just like before. Between 80-60% I start to feel tired and weak, need to do the rest before and after technique.

    When I hit 60% the energy level starts to nose dive double fast. Upon hitting 40% I hit rock bottom right away.

    If I don’t start to rest before hitting 60% I often can’t bring it back without a good rest; I need at least a night’s sleep. I really have to stop, that “just few more minutes” to finish the job is bad, I really got to stop dead, just leave it where I got to.

    Hitting 40% I out for the count for a few days.

    If this makes sense, I got only 60 “credits” but need to save up 100 “credits” - my zero is 40 not zero.

    Many thanks for reading this long winded story. If you want to read about my cycle touring please visit http://www.woollypigs.com

    NB: If you fancy reading more - click here. It is on a cycling forum that we use. We first reported the problem there and have had great help as the condition progressed. We post there under woollypigs and peliroja.

    If want to see all the meeting and dates I have had with my GP and NHS, click here. It is a Google Docs. I didn't bore you with that story - long wait, misplaced appointments...
     
    Last edited: Mar 11, 2015
    Mel9 likes this.
  2. justy

    justy Donate Advocate Demonstrate

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    Sorry I have not been able to read all of your post. Sounds a lot like possible Lyme and or co infections and less like M.E. I see you have been tested by GP - I presume this is in the UK? standard testing is notoriously unreliable - there is a lot of politics involved.

    There is a lot of good Lyme info on a sub forum here at PR and also lots of other great resources out there/ Lyme disease UK Facebook group is VERY helpful and very active and has lots of info in their files - you have to request to join. Plantar type pain is common in Bartonella infection - I have Bart and have had a lot of this over the years as well as pins and needles, shooting pains etc.

    Why cant I get well by Dr Horowitz is a great book and has a lot of great info about his theory of MSIDS, which may start with Lyme, but includes heavy metal issues, biotoxin illness etc

    Some of us in the UK have been to see Kenny De Meirleir in Brussels - he is the nearest (private) M.E specialist who can do a really thorough work up. He is finding chronic bacterial infections in large numbers of his M.E patients.
     
    woollypigs likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    yeah really sounds like ME/CFS thou as justy said, could also be something like lyme (which isn't supposed to exist in NZ and Australia.. we may have our own types which science hasn't picked up yet).

    My ME/CFS used to have the symptoms you mentioned (thou it was a hand which swelled up a few times). I used to have a lot of problems picking up objects as I lost some feeling in my hands (I had Raynauds for a while in my fingers with the ME/CFS too) and my grip used to let go and I wouldn't even know till the glass hit the floor.

    It common for those with ME/CFS to take rest day before a big event, this kind of resting is called "pre-emptive rest"

    I suggest to look up the methylation protocols as B vitamin deficiencies can cause tingling.
    If worst when upright or showering.. see you can have a tilt table test done to find out if you have ME/CFS coexisting dysautonomia going on like many of us do as that part of this can be treatable some.

    Really do take care not to case crashing and make your base line a lot worst. A common mistake those new with this illness make though from your post it sounds as if you are figuring out how to pace/rest with this well
     
    woollypigs likes this.
  4. Valentijn

    Valentijn Senior Member

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    @woollypigs - I had several weeks where a complicated hemiplegic migraine (translates to "we don't know what the hell is going on") reduced sensation on half of my body enough that I couldn't hold a piece of paper without crushing or dropping it. Like you, I wasn't getting enough sensation to tell how hard I was holding it.

    In my case, homocysteine tested high, and folic acid resolved the problem 30 minutes after taking it - though methylfolate is a better bet than folic acid. I also do a lot better on B12, and B12 deficiency can cause neuropathy.

    Have you had homocysteine, folate, and/or B12 levels tested at all?
     
  5. woollypigs

    woollypigs

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    @justy Yes this is in the UK. I have had the "normal" Lyme test which found nothing.

    I have left out the long and boring tale about waiting times and my not so helpful GP. Also skipped the research about Lyme on here. I wanted to hear from you what you think.

    I see Leeds and West Yorkshire CFS/ME clinic. Who says that it is not Lyme and the pain I feel is pain memory from what ever started it all.

    I talked to many family members and friends who all work in or near the health system or even had CFS/ME/Lyme. All have pointed me in the direction of Lyme.

    I even got a bite back in 2009, that was still there 9 months later. Started as a expanding ring which itched like heck, then it started to collapse on itself. Didn't get any flu like symptoms or any of the other Lyme symptoms.

    Can you get bitten and not react for three years?

    With you saying that you can have plantar pain and shooting pain, more boxes are ticked for me.

    I have contacted the Lyme Disease Action UK, who said it can be hard to talk your GB into ordering a different test as there is much misunderstanding.

    My GP wasn't very keen/happy when I started to point towards Lyme and CFS after talked to people online.

    I'm thinking about getting a test from the US, but don't know which one or if it is worth it.
     
  6. Valentijn

    Valentijn Senior Member

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    The Elispot-LTT test from Infectolab in Germany is looking the most accurate currently. It can be ordered in the UK via Blue Horizons. They have blood drawing locations pretty much everywhere.
     
    woollypigs likes this.
  7. woollypigs

    woollypigs

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    @taniaaust1 We travelled in Patagonia in very remote places, the west coast of the US and then Down Under before we had to call it a day. Some of the areas in the US we visited had Lyme according to the CDC.

    I only feel faint and dizzy when very fatigue, so trying to link it with a day I can go to the hospital for a test would be hard. Sods law this, every time I have seen a GP/specialist is when I'm good. Fell bad, call GP, book appointment, feel great when you go to the appointment.

    @Valentijn I was teasted for B vitamin and the GP tells me it is good. I did meet a physio who told me that you could still be within the target range of a mineral or vitamin when you were 40% below your norm. You will suffer but the GP says it looks good. Not sure if I have been tested for homocysteine, folate.

    I'm trying to get my file at the GP, can't get a copy without paying for it. They will print it out for me so that I can read it there but if I want to take it home I have to pay for the print out. Silly thing - everything is on hard disk already, why not copy and paste onto a memory stick, instead of printing it out? It would be cheaper for the GP, me and the planet.
     
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  8. woollypigs

    woollypigs

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    @Valentijn Thanks for that link, it looks like there is a few near me.
     
  9. justy

    justy Donate Advocate Demonstrate

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    If you remember a bite and a rash then yes this is much more suspect for Lyme. The Well One clinic in Beverly, Yorkshire has a doctor who is sympathetic to Lyme and I think they can send of blood to Germany or the US foor testing. You may also have co infections, wchich the foot pain and breathing issues point to (Bartonella, Babesia?) these are also carried by ticks and other biting things.

    You will get nowhere fast trying to discuss this with the NHS. I am afraid your only option is private.

    Well One in and Breakspear in UK, KDM in Brussels or a clinic in Germany, or else its the US for testing and Treatment.

    Well one - not too expensive but only treat with one oral antibiotic and Rife

    Breakspear - expensive, can do testing and short courses of IV antibiotics as well as prescribe oral antibiotics and herbals - beware they push a lot of other testing that you may not need and it can really add up! but I think they have helped a lot of people with Lyme and at least it is in the UK. There IV abx are expensive 3 month waiting list.

    KDM - Brussels -requires two day visit initially - approx. three month wait for appointment. Comprehensive testing not just looking for Lyme but also at immune etc - approx. 3,500 euros for initial tests. Iv antibiotics and orals and herbals offered for Lyme depending on what's found from tests. Iv's not as expensive as Breakspear and will do longer courses, but their is the expense and hassle of staying in BRUSELLS for extended periods (12 weeks for IV treatment)

    That's my quick potted notes of Lyme treatment in the UK - otherwise some people go to America (if it where me id go with Dr Jemsek in Washington DC or Dr Horowitz in NY state) not sure about the clinic in Augsburg, Germany at the moment.

    Good luck, and don't give up looking!
     
    Mel9, Alea Ishikawa and woollypigs like this.
  10. Gingergrrl

    Gingergrrl Senior Member

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    @woollypigs from the way you described the initial arm pain and neuropathy, I was wondering if you had taken Levaquin or any fluoroquinolone antibiotic in the months prior to your symptoms starting?
     
    ukxmrv likes this.
  11. woollypigs

    woollypigs

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    @Gingergrrl, the only thing I took was multi vitamins. Was feeling just fine, had a normal cold at one point in the year before. In the last five years I have been down with a cold maybe three times.

    The last time I was sick and bed ridden was when I had my middle ear infection in 2013. I think my partner has been sick at least five times since then, as she is now fourth day in bed, and I feel fine.

    Only got tired legs from all the running up and down the stairs with tea and soup :)
     
    Gingergrrl likes this.
  12. woollypigs

    woollypigs

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    @justy Thanks! Will look into that.
     
    justy likes this.
  13. daisybell

    daisybell Senior Member

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    Hi @woollypigs
    Were you tested for parvovirus? That can cause lots of joint pain and fatigue...
     
  14. woollypigs

    woollypigs

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    @daisybell I got a funny feeling that I had that as a wee lad, need to ask my mum.

    Just read up about it and it says it goes away by itself after week or. So I don't think it lingers around for two years.
     
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  15. daisybell

    daisybell Senior Member

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    I only wondered because that was what started my health decline... I caught it here in NZ when in my 30s, and had joint pain for at least 18 months, particularly in my hands...
     
  16. woollypigs

    woollypigs

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    @daisybell I was IN NZ when it all went down hill, did I meet you while there ?!? :)

    I didn't feel any flu/cold/illness in the first six month of this at all.
     
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  17. wastwater

    wastwater Senior Member

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    Have you had a look at transverse myelitis out of interest
     
  18. Valentijn

    Valentijn Senior Member

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    Actually with KDM the two-day initial appointment isn't necessary. It's just for the lactose and fructose tests, and helpful with collecting a stool sample. But if opting out of most or all of those, it would just be a normal initial appointment ... about 30 minutes I think?
     
  19. woollypigs

    woollypigs

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    Just had a read of the CFS Road Map (Thanks @SOC)

    Persistent fatigue: Yes I do feel a constant tiredness that even when I'm at 100% at today's standard, but not 100% at where I was before. On a good day now I feel like I'm running at 80% of what I was able to do before.

    Cognitive dysfunction: Only when I'm very fatigued. I have to speak in slowly because I know I will fall over the words, I know the words it is saying them that is hard. Don't struggle with speaking or taking part in a conversation. Though reading when very fatigues, is hard work, need to read sentences over again. I can remember things and think about things just like before.

    Mood disorders:
    That one my partner is very sure that I don't suffer from.

    Post-exertional malaise
    : Ever time I work, walk etc. over 2 hours, I start to get more fatigued, pain in my hands/arms and my lack of feeling in hands gets worse. I therefore have to think about what I'm doing. To make sure I'm holding object properly so that I don't drop it or damage what I work with/on. The more tired I get and round we go.

    Abdominal: N/A I eat happily what I have been eating before. No stomach upsets at all.

    Headaches: N/A Never suffered from this. If I feel one come on, I drink some water and it goes away.

    Tinnitus: Some dizziness and balance problems when very fatigued, a bit like fainting. Though it does feel more like I don't have the strength to walk to the toilet, up the stairs. Fear of collapsing.

    Sleeping like a rock, never had a sleep problem - head+pillow=zzzzz. If I have nothing planned and fancy a duvet day, a 12 hours kip with 6 hours snooze after. Followed by a little lay down for 3-4 hours. Is not unheard off, I love my bed :)

    Though, that said if I have to get up at 4am to do something, I'm out off the bed as I press stop on the alarm clock. I can easy work on a five hours sleep.

    Chronic sore throat: N/A

    Chronic cough: N/A

    Sensitivities: N/A

    Allergies N/A

    Muscles: Yes big time. Shooting pain up the nerves and mussels, like hitting the funny bone hard, on my both arms. Very sore borderline pain from below the knee to my toes, worse around my heal. When very fatigued waves of tingling pain moving from hands to arms to heck upper back then down my back to both legs. When the wave hit the legs and ankles it feels like I have twisted the ankles. When fatigued this wave takes about 2-3 days to go away. On normal days I just feel lightly sore, a bit like a day after painter your house or doing the garden etc.

    Lymph nodes: N/A

    Joint pain: Hips and knees uniform, when tired and fatigued. Though I'm not sure if it is the joint or just where the muscles, ligaments and tendons are joined to the bone. Doesn't feel like the pain I have in my bad knee, more a tired/stiff/sore pain.

    Anywhoo many thanks all.
     
  20. woollypigs

    woollypigs

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    I contacted Lyme Disease Action - www.LymeDiseaseAction.org.uk (LDA) who then contacted Rare and imported pathogens laboratory (RIPL) - https://www.gov.uk/government/collections/rare-and-imported-pathogens-laboratory-ripl - and they have no results for me, so I just had the screening test done which was negative so my GP/consultants wouldn't have sent it on to RIPL unless an immunoblot was specifically asked for.

    My options now regarding a test:
    - Show the reference LDA gave me previously about the screening test and ask my GP for an immunoblot to be carried out and ask that I want a treatable cause of myillness to be considered thoughly
    - Have an immunoblot carried out privately at one of the labs LDA have listed below

    LDA can help with the interpretation if I have a negative immunoblot from either of these routes.

    LDA said this about paying for testing:

    LDA also said :
    Now that is going to be interesting my GP wasn't very keen when I last asked for more test for Lyme/B12/etc. because I was desperate to find out what is going on.

    /woollypigs
     
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