So Disappointed PEM appears 6 hours after a Very Good Day

Sorry for such a long post but I wanted to vent about this shit illness. Even though I am now moderately affected compared with many here on PR, the unpredictability of it can still be so life altering.

Only yesterday I was delighted to think how much I had improved over the years. I was diagnosed in 2000 with ME/CFs when I could barely walk at times due to severe exhaustion, dizziness and pain and I had to give up my part time teaching. You could say that was when my "journey" began especially after my GP told me there were 3 things he could offer me - yoga, Tai Chi or Meditation. Once he told me this I knew I was on my own and that I would have to find out stuff for myself. It was so insulting and quite upsetting to be told this when I could barely get off the sofa because of such severe dizziness and what I know now was POTS.

After a couple of years I saw a private Endocrinologist who after tests said I needed a steroid and also dessicated thyroid because my hormones were rock bottom and would explain a lot of my symptoms. These did at least give me my life back but didn't control the POTS or help my immune system which was rubbish because I picked up every virus or infection that was going.

Over the years I have had positive tests for practically all the Herpes type viruses and others, borrelia plus I was allergic to mercury and nickel and had too high levels in my blood and hair. The first major thing I did in 2002 was to have all 13 amalgams safely removed (or fairly safely) and chelated as per Cutler for a couple of years though it did take 5 years for my levels to go back to normal.

Over the past 2 1/2 years I have done 18 months of the Cowden Protocol plus some Buhner herbs and I do think these have helped my immune system a lot, it does seem stronger now and I get over things a lot quicker. I know I have improved because for 2 1/4 years I have been wearing a Garmin Viofit wristband and when I first started I was only doing around 5000 steps daily or less. (This was when I started on the Cowdon and other herbals.)

Now over the past year I average 8550 steps a day and on the occasional day can get up to 10,000 steps as I did one day this week without ill effects apart from getting a migraine type head the next day

As my energy has been really good this week, in fact the best Christmas period I can remember, yesterday afternoon I thought I would attempt one of the walks I used to do regularly before being diagnosed in 2000. I have terrible memories of this place because as I got sicker and didn't know what was happening to me often after only about 10 or 15 minutes of walking my dog there, my balance would just go with no warning and I would be so dizzy I somehow had to get to where there was a seat although my heart used to race so much I didn't know what to do. My legs would go like lead and I would be staggering like a drunk and sometimes I don't know how I got back to my car. I still remember the tears I would shed because the experience had shaken me up so much.

So you can imagine my delight yesterday when I walk along the coastal headland where I have these terrible memories and can enjoy the walk although I was aware of slight increased heart rate after 15 minutes when I am right at the tip of this headland where the memory of me nearly falling over so often came to me. I gave myself I good talking to and walked back up to what is called The Gallops and where there are some benches and felt reassured and did sit for about 3 minutes to give my legs a short rest. I then felt fine and walked back downhill to where my car was and to where the entrance to the beach is.

This is where I realise it goes wrong. Because I had walked so well for practically 30 minutes which is pretty regular these days, I wasn't satisfied so wanted to push on and go down to the beach because my Beagle loves it there and so do I walking next to the sea. (Actually I realise I was testing myself). My legs did start to get rather heavy and I could start to feel my back aching a big so tried to find a rock to sit on but unfortunately they were all wet as the tide was just going out. All in all it was 45 minutes but I did have a sit down before walking back up the slope to the car.

There weren't any real obvious ill effects apart from my legs feeling rather heavy and I did feel elated to think how far I have come over the years. I did my usual 25 minutes of breathing my oxygen concentrator when home and everything felt fine, I remained very happy.

However, the first sign of anything wrong was about 4 hours later when my gut started bloating and hurting then around 10 pm when a strong migraine type headache started out of nowhere and I realised I needed a painkiller. About 40 minutes later suddenly the right side of my neck just seemed to pull causing huge pain, I could hardly turn my head. I soon went to bed not feeling good at all and slept quite quickly till around 3.30 am when I woke up feeling just awful. I could not get back to sleep and after an hour or so it was obvious I had a foul migraine developing and didn't manage to get back to sleep till around 5.40 when I did sleep only for it to be some sort of a nightmare.

I had to get up around 7.30 feeling like a zombie because the dog walker was arriving. It felt like I had some sort of virus, My gut was still rumbling and rolling with bloating and I had nil energy plus the migraine head. As the day has gone on I have been so cold which is unusual and still have had pain despite strong painkillers and now I have a very sore throat. All these symptoms are similar to what I now recognise as PEM but don't get them so often. For all the world I would say I have got a virus but often this only lasts 2 days provided I rest and then all the symptoms disappear. and my energy will come back. The key thing is that these days its always the same. Gut starts off feeling like I cannot digest my food and then later my throat gets red and sore and I develop a migraine with nil energy. My legs also feel very heavy and I do look like crap.

So all in all it definitely wasn't worth testing myself to see how much walking I could do, I should have just been satisfied with my normal 30 minutes including a short sit down. I do realise I am very fortunate to be able to do what I do and will again work on acceptance.

Finally I would like to say that I do hope that next year the lovely knowledgeable people here on PR get all the help they need to improve how they feel. There does seem to be progress being made at last.

Pam

 

Hi Pam, so sorry you've had such a rotten time. PEM really is the pits.

Best wishes for a better year in 2017.

 

T

So sorry this happened to you and thanks for posting because it may prevent me making a bad mistake myself now I can occasionally walk 5000 steps a day. So longing to go bush walking in the Australian Snowy Mountains!

 

While it sucks so much to have a bad crash, it's wonderful that you've obviously improved enough that you actually wanted to test yourself. Remember to take it easy a little longer than you'd like - I always fall into the trap of getting excited that I feel ok, then doing too much too soon. My fiance always has to remind me of everything I've already done that day, so then I realise that yes, doing more would be too much.

I think we tend to get a bit of an adrenal rush when we finally feel good and successful, so it's hard to either stop or at least have an adequate rest. Perhaps it might not have been such a bad crash if your 3 min rest had been longer, or perhaps you'd also added in a rest before going on to beach? Maybe you could take a towel with you during your walks so you can pop it on the grass or sand and sit down for a rest whenever you feel like it.

PEM sucks so much because it's so hidden. You have to factor in not only what you've done that day, but what you've done for at least the previous week, how you've slept, what you've been eating, whether you're stressed or otherwise sick...so many factors. And then it's hard to know when it's truly over! But just remember to focus on the fact that it's just a little misstep and that overall life is better. Have you looked at a CFS rating scale any time recently to compare your current abilities to when you were your worse? I always find that is a good reminder of my "overall health" during a crash, so I don't focus on my "right now" health which is obviously pretty depressing in a crash lol

 

Thanks for the replies and it is beginning to look that already I am feeling a bit better. Have actually wanted to do some ironing and the washing up so must be improving!

I am hoping that later this afternoon I am going to be able to go out to the small local park and get some fresh air with my dog but it only takes 15 minutes to walk round there plus there are lots of benches. However it is going to wet and quite cold so I won't be hanging around.

My throat is still a bit red and sore but my gut is normal now but I am continuing with the Andrographis and Echinacea capsules for at least 3 days as they always seem to help just in case it is a virus. There are lots of viruses around at the moment and it was only on Friday when I was thinking I had gone the whole of December without a hint of a virus which is unheard of for me.

Pam

 

Sounds like classic ME/CFS. It's like a spy novel poisoning; the event itself gives no signs, you only feel the effects well after the cause has passed. Rather like the entrance ramp to the Twilight Zone.

I'd say you were being perfectly reasonable; if one is getting better, isn't it time to get out and do something? Sitting around staring at a wall will make anyone sick. But ... nothing makes sense with this disease, and the right choice is also the wrong one, depending on the caprice of an invisible tyrant. I've never found a right answer for amount of activity; I still don't know where the crash limits are in part because they seem to constantly change.

 

Oh that's such a perfect way of putting it!

 

@bertiedog thank you! Your story gives me hope - you've come so far since the days when you were as ill as I am now. Gosh, I dream of walking my dogs for just 10 minutes up my own street without repercussions. Must have been freezing by the sea! But bracing. Lovely. The cup of tea after a walk like that is the best.

I'm just now starting on Dessicated Thyroid like you did, and I hardly dare hope for the improvement you've had.

Just this summer I was able to go to out for a couple of hours and be fine after. And I bemoaned having to cut my outings short for fear of PEM. Now I can't do a half hour without it starting up while I'm still out (I get migraines as a major part of my PEM too. Just horrible).

I'd love to go back to my scant 2 hours out. We truly don't appreciate what we have til it's gone.

I'm so glad you're feeling better already, and I really hope you and your Beagle can get safely to the beach one day. Slowly, resting along the way 1maybe with a hiking stick for help up the slope?

 

I SO agree but I think it doesn't quite beat the first cup of tea on waking when I have got up, eaten a small snack and then gone back to bed to read).

I love dessicated thyroid compared with thyroxine, it makes a massive difference to my quality of life. Dr M, the well-known CFS doctor wanted me to swop over to thyroxine many years ago "to make my thyroid results look a bit more normal". What she meant by that was to give me a TSH that isn't always around 0.02 even though my free T3 and free T4 are never high and T4 always towards the bottom of the range. It turned out to be a disaster, I lost all the gains I had made and I believe it made me very toxic, at least that is what it felt like. Either way my body couldn't use the 50 mcg I was taking and it took over a month to get back to where I was before the experiment.

Around 6 weeks ago I saw my first NHS Endocrinologist who suggested I might like to try dropping the extra 25 mcg thyroxine I do take as he felt I might be on a bit too much thyroid meds. (I also take 2 grains of the NDT)). Not to upset him I agreed on a trial provided I could go back if it didn't suit me. I have to have a blood test soon to see what is happening. I expect my free T4 to be at the bottom of the range cos I have a feeling I don't have great reserves of thyroid hormones at the moment and would be a possible explanation for Friday's crash.

Yesterday I had another nasty migraine that came out of nowhere even though I felt my energy was back so after my walk with Snoopy in the late afternoon, I could still feel deep, penetrating pain in my head so thought I would experiment a bit and instead of taking more painkillers I would take another 1/4 grain of NDT and just 2.5 mg extra hydrocortisone. After an hour or so I felt a bit better in myself and apart from sleeping for about 50 minutes in the evening felt better in myself. I also managed to sleep all night and could only feel a residue of pain this morning so I am thinking my body is missing this 25 mcg thyroxine.

I hope you do get benefit from the thyroid medication, it did involve a lot of trial and error to find the right dose going by how your body feels plus keeping an eye on bp, pulse and temperature. Mine was more complicated because of the worn out adrenals and that is always something to watch out for because you probably know if the adrenals aren't strong enough then one doesn't tolerate thyroid meds well. Good luck.

Pam

 

Oh yes, the first cup of tea in bed or snuggled on the couch is marvellous too! Couldn't do without it.

It's good to hear of a mainstream doctor not rubbishing NDT. I hope? He's probably worried that even with your low free T3 and T4 its suppressing your TSH, Like Dr M - Dr Myhill? So annoying. It's a redundant test in those of us with malfunctioning thyroids.

Ridiculous we have to dance around their egos - I'm so glad you experimented and cleared your brain pain. You know yourself best.

I'm going to start plotting my temperatures tomorrow on a graph. I know for certain that my body temperature runs too low, and it will be interesting to watch my vital signs improve. Low pulse etc.

My adrenals are probably wrecked - got to have them tested. It seems a delicate dance between them and the thyroid. Can't increase the NDT too much if the adrenals can't handle it. I read that the adrenals will down-regulate how much T3 is available, (by converting T4 to Reverse T3), and therefore how much energy you have, if they are struggling.

I'm not tolerating the NDT well - vertigo and constant headache. I think a whole grain to start must be too much for me.

Doctors dose us up so confidently, but we're the ones who read, research, and seem to know what's blooming best in the end.

 

@SuzieSam I still have to take my dessicated thyroid as follows - one grain on waking after the steroid has kicked in (usually wake for this around 5 am and go back to sleep) and then another grain around 1 pm. If I have had a busy day like today I take another 1/2 grain at 5 pm together with a tiny bit of hydrocortisone.

I have a feeling that the morning migraines are a reaction to the day before and basically running too low on steroid and possibly T3 too and not stress dosing.

One other thing that comes to mind is that all the talk about mitochondrial dysfunction in ME/CFS which I am sure happens is that every single cells in the body needs some T3 but this often seems to be overlooked. at least on this Forum.

Have you done a 24 hour cortisol saliva test to see how your levels are? My Endo didn't rubbish these at all though they are no good when on Pred unfortunately.

Pam

 

Hi Pam,

I agree. The holistic doctor I'm seeing told me that when he did his psychiatry rotation in the early '80s, if the anti depressants didn't work they tried B12 shots and T3! What happened to that? Big Pharma. And it worked a lot of the time. Appalling that money and corruption won out.

I've been hardly able to move. Couldn't wake up on Friday. Kept falling back asleep. Staggered to bathroom. The weekend was a blur.

After 2 weeks on 1 grain my T3 is a tiny bit higher (barely into normal). My T4 has plummeted from the lower quarter to below normal. Expected, really on this low dose.

But oddly, my TSH is even LOWER than normal! Oh for heaven's sake! This points to a problem with my pituitary gland. My GP wants me to come to see her. I don't want to see a bloody endocrinologist. I can imagine what crap they'll say about my NDT.

I had a blood cortisol done last week - normal. No DHEA. No progesterone, slightly high estrogen. Normal testosterone. So bloody confused and exhausted. I'll get a saliva cortisol test done.

So fed up, confused and my brain is full of concrete.

Sorry for the rant. I think I should do my own thread!

Hope you're feeling good Pam.

 

@SuzieSam Sorry to hear you are not doing well, lets hope the saliva cortisol test shows something up which will give you something to work on.

I wouldn't worry too much about the TSH dropping quickly with the 1 grain you have been taking because this is what happens with me. I get my blood tested at the end of this week but I bet my TSH will still be 0.02 but my T4 is going to be lower. The doctors hate the TSH being low because they are trained so badly these days regarding the thyroid and think it indicates hyperthyroidism which of course it can be when on any medication with T3 the TSH is likely to be suppressed.

I am now absolutely certain the crashes I have been getting over the past 2 weeks and far worse migraines are due to the lack of the extra T4 which I stopped on 25 November on the Endo's advice. Three days running last week I ran out badly of energy whilst out walking, it was horrible. CNS overreaction, dead legs and massive feeling of stress.

By Saturday I couldn't stand it any longer and luckily found some T3 I had in my cupbaord so took just a quarter of the 25 mcg tablet in the morning and mid afternoon on top of the 2 grains. My energy was a touch better. Yesterday I added just one quarter of the T3 but was very poor with a migraine and today still had the migraine but did feel a bit better in myself. Today I took about 9 mcg T3 mid afternoon and did the usual walk which has been causing me problems these past couple of weeks. I felt back to my old self with my legs so much stronger so that is all the proof I need. I also looked back at my diary to when I stopped the thyroxine and I began to feel it on the 2nd day which I know the Endo won't believe but there again he doesn't live in my body!

I can see that the migraines have got worse and worse over the past few weeks along with the crashes but after the blood test on Thursday I will restart the thyroxine but will have to have small top-ups of the T3 until it builds up. This is definitely not easy but I wish you well and hope you get some good improvements soon.

Pam

 

Thank you, that's so reassuring. I went and looked it up to confirm, and of course you're absolutely right. It's pointless going to my GP because she'll just have a massive go at me about what I'm taking.

Surely I can't be hypER with a seriously low T4, and a still barely normal T3 just because my TSH is so low. Seems total crap to me. Always has done, every time I went to her with my bad Free T's, and she said, "Yes, but look at your TSH!" And the endocrinologists are just as bad. Nightmare. Who cares what the TSH is doing if I don't have enough of the active hormone that charges up my energy?

And your situation would make me apoplectic - enduring migraines at a doctor's whimsy. What you're going through, after being stable and happy is just unforgivably bad doctoring. My migraines are worse than labour pains. If I don't catch them with my abortive pill, Rizalt, they can last 3 days. I would seriously rather have my fingernails pulled out. Luckily, I found out that taking a pinch of salt when the first bolt of lightening hits often staves them off. Incredible. I've increased my salt intake dramatically and it's helping a lot.

Why wouldn't he believe it? Because it's inconvenient? Is it too soon to feel the effect? I don't know. But yes, you do know your own body, and please don't let the high and mighty doc try to tell you different! G-d, I loathe doctors most of the time!

I wish your migraines gone, and lots of lovely walks with your lucky dog. Oooh it's Thursday tomorrow! Back to thyroxine for you! Hooray!

 

Actually now I have the evidence that it is nothing to do with ME/CFS but it is to do with the withdrawal of the thyroxine I have taken for years in addition to the NDT because now I have my blood tests results having been off the 25 mcg thyroxine for 6 weeks.

TSH - 0.01 (lower than last time)
Free T4 - 8.32 range (12-22)
Free T3 - 4.93 range (3.1-6.8)
TPO antibodies over the range at 44, top of range was 34
Thyroglobulin antibodies ok at 32.4, range >115

So I was right all along, it was a disaster for me stopping the bit of extra T4, I did miss it from the 2nd day and have ended up with regular crashes on my walks, daily severe migraines and a basilar migraine which I haven't had for years. Oh yes a nasty virus too! I am now on Lyrica to help with the daily horrendous migraines.

This is what you get if you listen to traditional Endocrinologists on our NHS. They go by blood tests and what your height, weight is and then work out what you should be taking. This is complete GARBAGE, we are individuals and have individual needs. By listening to what the Endo told me I have lost 3/4 of the health gains I have made over the years and wonder how long it is going to take to get them back.

To say I am LIVID is putting it mildly!

Pam

 

I really feel for you Pam. I'm so sorry this has happened, and I hope you recover the lost ground quickly now that you're back on the extra thyroxine.

Bloody know-it-all doctors! I will never bow before them again!

Keep well, take it easy, be kind to yourself.

 

Actually I am not going to take thyroxine but instead take an extra half a grain of NDT. Yesterday when I added back the 25 mcg thyroxine I didn't feel good and ended up with bad sweating when walking the dog. All the time I have been off the thyroxine I haven't had any sweating nor that weird feeling in my legs I had yesterday. I had been aware that all through December despite me running out of energy I wasn't having horrible sweating which I have had every other winter and wondered if it was cos of no thyroxine.

So I guess something good has come out of the experiment and that is that I don't think thyroxine suits me at all but I do need more thyroid hormone. I have taken an extra half a grain this morning and feel so much better already. Its obviously going to run out so will top up with my normal 1 grain after lunch.

Hope you can get your thyroid balanced too.

Pam