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CFS with fibromyalgia - recent worsening of symptoms


TracyAnn
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Hi
I am new to this forum. I have been unwell on and off for over 20 years and have been through a whole range of therapies, including psychotherapy, nutrition (helped a lot), yoga (helps a lot), homeopathy, massage, acupuncture. I was only diagnosed with fibro in Sept last year so was not even sure what I was dealing with. The diagnosis helped, I went on Amitriptilline 10mg and it helped overnight. Was glad that a consultant rheumatologist believed me as well; but he has not been able to offer much help apart from the medication, diagnosis and some physio. The muscle pain is much better and it has helped that I have done so much yoga anyway that I know exactly what to do during a flare up.

The problem is currently a very blocked head - I am wondering whether I will end up going off sick in my job as an administrator - I just feel so exhausted and unable to cope. I went to Thailand for one month in December, to work as a volunteer - kind of to treat myself by being away from winter for a while - but I fear it may have caused me big problems. I had two vaccinations before I left, and had 95% deet whilst there because the mosquito bites were so bad and swelling up. Since I got back all my nails have broken really short (never happened before). I'm scared like I've never been scared of this illness before. In fact I was just irritated by it before plus depressed. I have no help or support, no spouse, really no one who properly takes time to listen and believe me. I have been looking into Reverse Therapy - not sure whether it would help but I don't have tons of money for either this or supplements so I need to make the right choices with my money, although I can't even make decisions due to the illness! I hope someone can help point me in the right direction. Also had my amalgams removed over 10 years ago in harley st but again am scared as if they weren't done properly maybe I'm really ill inside with so many toxins from this and everything I took in Thailand (including some strong anti-histamines prescribed there). Many thanks for any advice!

16 Replies
CarolineN
Posts: 4760
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Hello Tracyann, welcome to HP.

I too have ME (vastly improved) and FM (comes and goes) for a similar time so know what you are going through.

Please go to your GP and get your thyroid tested. FM seems to be a precursor of low thyroid, [url]see here[/url]. Make sure they do full thyroid tests, not just the basic one - if you can persuade them to. If necessary take some evidence like the connection I have given you, so you can back up your case. I had to fight to get any help and ended up having to go private :eek:. The NHS might be a bit more supportive now, I don't know.

The other website to look at and to my mind, excellent, is [url]Dr Sarah Myhill's[/url]. She is a GP who specialised in this problem, with tendency towards functional medicine, and very helpful. Lots to read and download.

I assume you have looked at the form discussions on here? Lots of info here too, and links to look up.

Hope you find some answers, and get better soon.

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TracyAnn
Posts: 181
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(@tracyann)
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Joined: 13 years ago

Hello Tracyann, welcome to HP.

I too have ME (vastly improved) and FM (comes and goes) for a similar time so know what you are going through.

Please go to your GP and get your thyroid tested. FM seems to be a precursor of low thyroid, [url]see here[/url]. Make sure they do full thyroid tests, not just the basic one - if you can persuade them to. If necessary take some evidence like the connection I have given you, so you can back up your case. I had to fight to get any help and ended up having to go private :eek:. The NHS might be a bit more supportive now, I don't know.

The other website to look at and to my mind, excellent, is [url]Dr Sarah Myhill's[/url]. She is a GP who specialised in this problem, with tendency towards functional medicine, and very helpful. Lots to read and download.

I assume you have looked at the form discussions on here? Lots of info here too, and links to look up.

Hope you find some answers, and get better soon.

Hi Caroline

Thanks, I will take this when I next visit my GP. I'm so worried about going there; usual thing, although I've been diagnosed there is no evidence so they don't realise how serious it is. I am getting more depressed as the symptoms get worse, but treatment for depression has never worked because I'm exhausted so couldn't feel happy anyway! I've also been looking at Dr Myhill's website today, further to your recommendation in another post - very helpful. A lot to change though and a lot to read when exhausted. I'm in a vicious circle and hate it but thanks for your help. Did you get treatment for your thyroid? Did you see an endocrinologist privately then? Thanks Tracy

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CarolineN
Posts: 4760
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Hi Caroline

Thanks, I will take this when I next visit my GP. I'm so worried about going there; usual thing, although I've been diagnosed there is no evidence so they don't realise how serious it is. I am getting more depressed as the symptoms get worse, but treatment for depression has never worked because I'm exhausted so couldn't feel happy anyway! I've also been looking at Dr Myhill's website today, further to your recommendation in another post - very helpful. A lot to change though and a lot to read when exhausted. I'm in a vicious circle and hate it but thanks for your help. Did you get treatment for your thyroid? Did you see an endocrinologist privately then? Thanks Tracy

Hi Tracy

More often than not depression is the result of one's inability to cope any more - not an illness in itself. I was given amitryptilline under protest (it is an antidepressant) and told them I'd try it for 3 months - it was useless on my symptoms. I learned to ask myself 'What is the worst thing that can happen if I don't do ...?' and if the answer is nothing then I leave it. I didn't have the energy to be depressed or angry - it absolutely zaps one's energy.

If depression is a problem then .

I saw [url]Dr Mouton [/url]who does a barrage of tests and has put me on both T4 and T3. The NHS endocrinologist was USELESS! 😑

The other thing you must look at is gut health and food intolerances. This is fundamental to our problem, I am sure. Antibiotics cause havoc to out gut bacteria and it is only further down the line that things start to go wrong.

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TracyAnn
Posts: 181
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(@tracyann)
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Hi Tracy

More often than not depression is the result of one's inability to cope any more - not an illness in itself. I was given amitryptilline under protest (it is an antidepressant) and told them I'd try it for 3 months - it was useless on my symptoms. I learned to ask myself 'What is the worst thing that can happen if I don't do ...?' and if the answer is nothing then I leave it. I didn't have the energy to be depressed or angry - it absolutely zaps one's energy.

If depression is a problem then .

I saw [url]Dr Mouton [/url]who does a barrage of tests and has put me on both T4 and T3. The NHS endocrinologist was USELESS! 😑

The other thing you must look at is gut health and food intolerances. This is fundamental to our problem, I am sure. Antibiotics cause havoc to out gut bacteria and it is only further down the line that things start to go wrong.

Dear Caroline

I am so grateful for your advice as I am too unwell to find a clear direction, but I have a feeling that there is something physically very wrong, as anti-candida diet in the past helped. I just don't seem to have the strength alone to re-start it properly (I saw a clinical ecologist who was also a medical dr some years ago but he is now retired - he diagnosed using Vega testing and I followed it religiously with his encouragement). So I will definitely look into seeing this doc at the Hale. It is actually two mins' walk from where I work!! I saw a homeopath there who did biofeedback but I was a bit unsure about her methods and she talked about herself a lot! It was a bit offputting and I wasn't sure she was taking me seriously or knew what she was doing! Fear of wasting money on this kind of thing is another problem so I really appreciate you pointing me in a clearer direction. Am going to read Dr Myhill's book which I downloaded today too. I may decide to see her, not sure yet.

For me I found Amitriptilline helpful - I felt amazing after the first night on it and up and down but usually better thereafter, so I'm still on 10mg. Apparently this dose is not strong enough for it to count as an antidepressant; but it works as a muscle relaxant by improving REM sleep significantly in some people - it helped in me but now something has caused me to relapse - possibly vaccinations and a month spent in a humid country covered in insectiside, I'm not sure but I'm definitely worse than I've felt for years at the moment! Still at work though but like a zombie, glad there is no pressure for the time being but I need to get myself up and running for busier times, hopefully. I'll let you know what I decide/how I get on!

When I say depression, yes I mean just a bit sad that I can't do anything. I'm now wallowing or allowing myself to indulge in it, I'm trying to relax but am a bit frustrated that I have to always put my life on hold because of this problem! I'm happy inside. Will look into EF technique too at some point.

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kvdp
Posts: 1033
 kvdp
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Joined: 12 years ago

Hi TracyAnn,
getting to grips with a case like this does require a personal consultation I'm afraid.

But I will tell you this for free: get your vitamin D levels checked, that's a vital starting point. If your GP refuses to do it, then you can get a postal test done for about 50 quid.

Why vitamin D? Well of course that's only the start of it, so it's not the only consideration, but we are currently suffering a nationwide epidemic of deficiency of vitamin D, and it may be no coincidence that you are feeling this much worse half way through January.

Normally we enter winter with a reserve acquired through the summer, and when spring arrives, we are depleted, in time to begin making more. Now, with recent advice to avoid the sun, most of us are beginning winter already deficent, and it only gets worse from there.

You need to get the actual figures as well, because phrases like 'low' or 'normal' are not adequate to make further recommendations. I should say that the offical figures for adequacy in the blood, and for supplementation, are based on bone health only. Unfortunately this gives a minimum figure, so you need to take much more than recommended, and that amount depends on the blood test results.

However, pending a blood test result, you can safely take 5000iu of D3 per day, as that is roughly the amount you need to stop your levels backsliding while you wait. In fact that figure is more cautious than necessary: it is probably not enough, but don't go for extended periods on higher doses without a blood test.

Let me know if you want to know more about this, or see other threads on the subject, Google Vitamin D Council, Credence, Mercola, or Sunlight Robbery.

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TracyAnn
Posts: 181
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Thanks for this. I will speak to my GP on 27th so will see whether I can get a test. I will probably end up paying privately. I am looking into several nutritional improvements. I had a consultation with the ION some time ago and have lapsed with following their recommendations. Yesterday I re-started the supplements recommended by them (this was based on my symptoms as I was not diagnosed at that stage), Allergy Research Group Adrenal; P-5_P complex (B6 and B12, magnesium, zinc and beta carotene, and bio-acidophilus (Biocare). For now this is a start as even today I feel much brighter - may be helped that it is not raining as it was raining heavily yesterday. I may return to the ION and perhaps they can arrange Vitamin D tests and further help, if the GP is not helpful.

I work not far from where you are so will bear this in mind for the future - depending on how the pain problem goes but it appears to be improving and sometimes non-existant, thankfully!

I did note in my first post that I spent December in Thailand - I did wear sunscreen for a lot but not all of the time however. Do you think in this case I could still be Vit D deficient? You may be right as thinking about it, every winter, especially Jan and Feb I suffer from exhaustion, which is why I made the effort to take a holiday in the sun last year to see whether it helps. It helped temporarily; maybe now I need to still look at the nutritional side. I am also taking more time for relaxation and restful sleep; I seem to need 9 hours in bed!

Thanks

Tracy

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kvdp
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 kvdp
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Sunscreen over about factor 8 will kill vitamin D production pretty much completely. Another interesting twist is that if we shower after sunbathing, we actually wash off what we have made before it travels deeper into the body.

But yes, a holiday in Thailand would help (winter sun in the uk is not much help). However, if you have already begun winter quite deficient, then you may have barely made up your levels before travelling home again. Our physiology requires us to build up a store.

Levels in the blood of below about 50nm/l are on the low side for health, but quite sufficient according to many standard sources. Mercola reckons that it should never drop below 30, although many of us get down there frequently. And a 'therapeutic level' is between 80 and 90 nm/l, which is high from a medical point of view. This does vary depending on the exact test used as well.

Additionally, it seems that when our levels rise, we feel an initial benefit, but our levels of other nutrients, especially magnesium can be used up more rapidly. So the early benefit can be followed by relapse unless we address mineral levels also.

I'm starting to think that supplements are such a 'bitty' way to get nutrition, that when we start on one we then have to deal with all the others as well. Nevertheless, they are still better than going without those nutrients at all. Nature used to have a way around this problem - it's called 'food'. The trouble is that our food is so depleted now, that it can't be relied upon on alone.

As you are serious about getting a blood test, then you should take some D3 (at least 5000iu per day) while you are waiting. And/or get on a sunbed two or three times a week.

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TracyAnn
Posts: 181
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Thanks kvdp. That's very helpful. In that case I probably hardly stored any Vit D whilst in Thailand. I wore suncream quite a lot although not always, and sat in the shade a lot so that I didn't burn. I must say I felt much healthier whilst out there, and I wasn't relaxing a lot, I was getting up early and working in a school four days a week. It was humid yet I wasn't as tired as I am here.

I have a friend who grew up in Africa but is caucasian, and he uses sunbeds here in the winter. I've always thought that might be a bad thing but he said he just doesn't feel well otherwise. He was in Africa until age 18 and is now 60 and has always used them. So I might give it a go. I agree with what you say about the supplements but even when I've eaten lots of wholegrains, fresh organic veg, seaweed, and no caffeine etc for a long time, as pretty clean and varied a diet as you can get, I only felt better when I added good quality supplements, so it may be the case that our food doesn't contain enough nutrients to keep us healthy. Suffering so badly from fatigue and noticing such a difference from the supplements it is impossible not to take them and I agree it is better rather than going without essential nutrients.

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TracyAnn
Posts: 181
Topic starter
(@tracyann)
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Joined: 13 years ago

Hi Tracy

More often than not depression is the result of one's inability to cope any more - not an illness in itself. I was given amitryptilline under protest (it is an antidepressant) and told them I'd try it for 3 months - it was useless on my symptoms. I learned to ask myself 'What is the worst thing that can happen if I don't do ...?' and if the answer is nothing then I leave it. I didn't have the energy to be depressed or angry - it absolutely zaps one's energy.

If depression is a problem then .

I saw [url]Dr Mouton [/url]who does a barrage of tests and has put me on both T4 and T3. The NHS endocrinologist was USELESS! 😑

The other thing you must look at is gut health and food intolerances. This is fundamental to our problem, I am sure. Antibiotics cause havoc to out gut bacteria and it is only further down the line that things start to go wrong.

Hi Caroline

Wondered whether it would be ok if I send you a short PM? Just have a few questions as I am deciding on some help. I've had a very bad relapse this weekend after thinking I was so well and energetic, and drinking a small amount of beer! Can't believe how bad it's made me feel (I'm sure it's that). Thanks Just need to make right decision to find a practitioner who can help boost my energy and get on with life now, I've really had enough of this problem and am ready to fight it..

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CarolineN
Posts: 4760
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Hi Caroline

Wondered whether it would be ok if I send you a short PM? Just have a few questions as I am deciding on some help. I've had a very bad relapse this weekend after thinking I was so well and energetic, and drinking a small amount of beer! Can't believe how bad it's made me feel (I'm sure it's that). Thanks Just need to make right decision to find a practitioner who can help boost my energy and get on with life now, I've really had enough of this problem and am ready to fight it..

Hi TracyAnn

A PM is fine.

Maybe you have done too much over the w/end? /are intolerant to yeast? ME has many different sides to it! πŸ™ For me doing too much is not helpful!

Ref your earlier post which I missed - supplements are probably the only way of getting the extra nutrients needed by those with problems like ME. Unfortunately our foods are [url]seriously depleted in nutrients [/url]compared with 60 years ago. Juicing is a way of getting much-needed enzymes and a higher concentration of phytonutrients than one can get from a meal, if it is added to one's overall food intake, but to get the dosage needed, one generally needs to take supplements. B vitamins are needed for energy production along with some minerals.

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IrmaJ
Posts: 24
(@irmaj)
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Joined: 11 years ago

ME/CFS/Fibromyalgia could be Lyme Disease

Hi TracyAnn
Could you have a look at my recent post under ME/CFS/Fibromyalgis. I sincerely hope you don't have Lyme Disease, but from your symptoms it is possible.
As you were in a tropical country, might you have picked up something there?
Best of luck with a correct diagnosis & treatments.

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BreathingRemed
Posts: 23
(@breathingremed)
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Joined: 10 years ago

Hyperventilation syndrome?

Hi TraceyAnne,

Have you looked up hyperventilation syndrome? Sometimes normalising your breathing can be the missing part of the health puzzle.
Best wishes,
Janet
πŸ™‚

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cosmicjazzer
Posts: 43
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Joined: 12 years ago

Hi TracyAnn. So sorry to hear you're suffering like this. I've experienced some of what you describe. In fact, I've been rather dysfunctional for the last 13 years with MCS/CFS plus, perhaps, a mild version of FM.

Anyway, I have, for a few weeks now, been following the detox regime in Dr Sherry Rogers' Book "Detoxify Or Die." Rogers is an MD who herself suffered from MCS and went on to become truly expert in all things connected with environmental medicine. Her detox regime includes supplements to rev up the detox pathways, anti-oxidants + general supplementation including magnesium,which is apparently very important for relaxing muscles. Perhaps the most important element is a daily infra red sauna. Apparently many nasty toxins can ONLY be released by sweat... One of these saunas can actually be purchased from about Β£200 btw. I like the book because it is based on excellent, cutting edge science.

I really do feel SO much better since starting this regime, I have MUCH more energy, improved vision, improved thinking and have glimpsed a hope I'd forgotten about. I wished I'd started with the out and out physical approach before... Rogers also wrote another VERY interesting book called Pain Free In 6 Weeks btw., which has a lot to say about FM and has much to back up the claim of its title.

If you do feel inclined to try the detox I'd suggest using Lypo Spheric Glutathione instead of the Recanostat that Rogers recommends as I believe the former to be more bio available (but it wasn't around when Rogers wrote the book).

Very best of luck! πŸ™‚

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TracyAnn
Posts: 181
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(@tracyann)
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Hi

I decided to come back to this thread today - just been coping I think. I moved house and various things got in the way, but I'm still just coping and wondering each day how to make it in to work.

So I'm going to start putting some of this into practice. I bought a Nutribullet which may help.

Recently I took antibiotics for quite bad cystitis; wasn't happy to do so but I couldn't seem to get rid of it and it is so awful. That may have made me slip back.

Last night I had the dreaded insomnia. I've been so depressed recently that I came off my Amitryptilline 30mg (without consulting my GP) so that I could go onto St John's Wort. I now feel like a drug addict, as coming off it for a few days makes my head so foggy and causes insomnia. i don't want to be addicted.

I've also put weight on over the past five years since taking it - I never thought it was related but it could be. I am 47 so I thought it was due to age. I do quite a lot of exercise but try to keep it reasonable - and eat sensibly but I've been adding about 1kg a year or more and am now 52kg after being 46-48 kg all my life.

Basically I am back in a hole. I tried to have a relationship recently and just find I can't cope, even though he is affectionate. He doesn't have much time for me really though as he has children and looks after a friend's child one night a week. I get resentful about this, as though I am meant to go along on his terms. Other than that he is a lovely guy but I am at a loss to know what to do as every now and then I go off the deep end. He is forgiving so far but will probably not stick around and in any case I don't want to be his lowest priority.

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Mrs. S.
Posts: 138
(@mrs-s-3)
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Joined: 7 years ago

Hi TracyAnn,
getting to grips with a case like this does require a personal consultation I'm afraid.

But I will tell you this for free: get your vitamin D levels checked, that's a vital starting point. If your GP refuses to do it, then you can get a postal test done for about 50 quid.

Why vitamin D? Well of course that's only the start of it, so it's not the only consideration, but we are currently suffering a nationwide epidemic of deficiency of vitamin D, and it may be no coincidence that you are feeling this much worse half way through January.

Normally we enter winter with a reserve acquired through the summer, and when spring arrives, we are depleted, in time to begin making more. Now, with recent advice to avoid the sun, most of us are beginning winter already deficent, and it only gets worse from there.

You need to get the actual figures as well, because phrases like 'low' or 'normal' are not adequate to make further recommendations. I should say that the offical figures for adequacy in the blood, and for supplementation, are based on bone health only. Unfortunately this gives a minimum figure, so you need to take much more than recommended, and that amount depends on the blood test results.

However, pending a blood test result, you can safely take 5000iu of D3 per day, as that is roughly the amount you need to stop your levels backsliding while you wait. In fact that figure is more cautious than necessary: it is probably not enough, but don't go for extended periods on higher doses without a blood test.

Let me know if you want to know more about this, or see other threads on the subject, Google Vitamin D Council, Credence, Mercola, or Sunlight Robbery.

You are absolutely right regarding Vitamin D.

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Mrs. S.
Posts: 138
(@mrs-s-3)
Estimable Member
Joined: 7 years ago

Hi

I decided to come back to this thread today - just been coping I think. I moved house and various things got in the way, but I'm still just coping and wondering each day how to make it in to work.

So I'm going to start putting some of this into practice. I bought a Nutribullet which may help.

Recently I took antibiotics for quite bad cystitis; wasn't happy to do so but I couldn't seem to get rid of it and it is so awful. That may have made me slip back.

Last night I had the dreaded insomnia. I've been so depressed recently that I came off my Amitryptilline 30mg (without consulting my GP) so that I could go onto St John's Wort. I now feel like a drug addict, as coming off it for a few days makes my head so foggy and causes insomnia. i don't want to be addicted.

I've also put weight on over the past five years since taking it - I never thought it was related but it could be. I am 47 so I thought it was due to age. I do quite a lot of exercise but try to keep it reasonable - and eat sensibly but I've been adding about 1kg a year or more and am now 52kg after being 46-48 kg all my life.

Basically I am back in a hole. I tried to have a relationship recently and just find I can't cope, even though he is affectionate. He doesn't have much time for me really though as he has children and looks after a friend's child one night a week. I get resentful about this, as though I am meant to go along on his terms. Other than that he is a lovely guy but I am at a loss to know what to do as every now and then I go off the deep end. He is forgiving so far but will probably not stick around and in any case I don't want to be his lowest priority.

TracyAnn,

Your friend comes as a package - kids and all. If you find this hard to cope with then you must make life decisions, which do not involve him in a romantic way.

Love,
Patsy.xxxx

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