Another trip to the Doctors .....thumbs up!...its long story

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Another trip to the Doctors .....thumbs up!...its long story

Postby Iceskatemum » Tue Feb 04, 2014 2:50 am

Hi fibro family , haven't been on much over the last few months as I was finding concentrating on the internet or anything else quite hard due to almost constant flares. I have been left very fatigued and have had periods of increased pain, never mind anything else.
To cut to the chase, given all of the above I thought long and hard about what else I could do and eventually decided to see another doctor :crazy: .
He had come highly recommended but was primarily know for his work with ME/CFS patients, however given my levels of fatigue I wondered if I might be one of the many on here who seemed to suffer from both illness' and so I managed to get an appointment for earlier today .

For a start he was very welcoming and put me at my ease, he went right back to my childhood illness', any major episodes of illness I could remember , any surgeries and asked when there was a time I didn't feel ill.
He went over any times of stress or trauma and we ended up talking about when I thought my DX illness developed when I was dx and what treatment I was having . He then carried out a physical examination . At all times I felt he was listening and taking on board all I was saying.

As my OH said if the Dr had said at any point I didn't have FM I would have been gutted but the Dr never made me feel at any point during the ONE HOUR 10 MINS I was with him that I was wasting his time.

In Summary he said that as I had already received a DX for FM he wouldn't confuse matters by adding another diagnosis but that it was his understanding the FM and ME/CFS were all on the same continuum (line) and the label that a patient received only came about due to were the diagnosing Doctor felt you lay on that line. so if you had more pain than fatigue you tended to be given the FM label or if you had more fatigue you had the ME/CFS label . Given my pain levels he would therefore continue to say I had FM.

As for treatment I was not just shown the door but he spent the last 10 /15 minutes discussing a treatment plan. :yikes:

He supports the work coming out of California that appears to show the fatigue we are suffering stems from a breakdown in the Anerobic energy pathways and the build up of lactic acid in the muscles . He quoted work from Newcastle that is showing we seem to be producing more lactic acid more quickly than those not experiencing the classic muscle pain of FM .

What Next........

To try and combat the effects of the lactic acid I have to take ALPHA LIPOIC ACID a naturally occurring supplement that you can get in many health food shops .( Have any of you tried this supplement and did you see any results good or bad?)

To get on top of pacing given I am a boom or bust type of person He suggested being more familiar with when my heart rate increased and using the increased heart rate to determine my pacing levels . Heart rate increases then stop what I'm doing , rest up for 20-30 minutes or it returns to normal (for me ) then continue on with what I was doing. These small mini breaks would I guess make me more of a tortoise than a hare but hey didn't the tortoise get there in the end

Given other symptoms I am to try a wheat & Dairy free diet :roll: , take a dairy free probiotic, :-? try Omega 3 fatty acids :-) plus he is going to write to my GP and ask for them to monitor my Vit D levels and to recommend Vit D depending on the results. ;-)


So after all that, how do I feel ......slightly disappointed I haven't been awarded another label :lol: :lol: as I think the ESA/ ATOS folk are very keen on labels and I am due a review sometime soon.

Happy someone listened and while listening seemed to care about how I was .

Excited yet sceptical about the new regime I am being asked to follow. I know the change in eating habits will be hard as I love bread and cereal of any kind , made all the better washed down with cups of white tea .

Slightly scared of my GP reaction as I accessed this Doctor through a support group I have attended but also interested in what this consultant has to tell the GP about new and exciting development in FM research both in the UK and further afield.

If anyone has any thoughts on what has been recommended I Would love to hear about it, especially if you have followed any of the recommendations .

So fingers crossed guys, I will head off to the health food shop sometime tomorrow and stock up on whats needed . Will let you know how I get on.
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby zappa20 » Tue Feb 04, 2014 3:36 am

Haven't heard of its use in Fibro, but hope you ses some improvement and definitely worth a try. Alpha Lipoic Acid is said to be a strong anti oxidant, and has been recommended for use by diabetics with diabetic neuropathy symptoms. ie nerve damage which occurs due to high blood sugars. There was a german study done on its effectiveness in diabetic nerve reapir about 10 or 12 years ago. It's said to work by protecting the nerves from further damage and in some case helping the nerve sheaths and fibres repair themselves and so regain function. for this you need 600mg per day , I've been taking them now for several years.
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby *Lisa* » Tue Feb 04, 2014 1:51 pm

Nice to hear you had a good appointment, always makes you feel so much better when your listened to :-D

Would be interested to hear how the ALPHA LIPOIC ACID helps you...

The diet will be hard but i have found that just cutting out carbs is a huge benefit in my fatigue levels
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby Iceskatemum » Tue Feb 04, 2014 3:32 pm

Have to admit cutting out the wheat will be hard Lisa. Not really looking forward to it am going to cut down for a while before going cold turkey!
As there was so much to take in I'm going to go step by step, so will try the ALA first for a few weeks and see how that goes.The Dr suggested if it was going to work it should do quite quickly. I start at 50mg and rank up by 50/100 mg ever 3-4 days. if I feel an improvement then I stay at that level or continue to Max dosage of 600 . If the Max dosage doesn't show improvement in a few weeks then it seems its not for me.

I think he is basing this around work being undertaken in Newcastle that seems to show folk with FM produce lactic acid in thier muscles more quickly than others and this leads to the pain which people often says resembles pain they would have got if they had exercised or over done things.

In addition to the ALA I hope to get a the use of sports heart monitor and try and keep my heart rate reasonably level there by monitoring my pacing & stopping the boom or bust I often experience.

Will certainly report back on all the recommendations.

Take care
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby fibro-lu » Tue Feb 04, 2014 5:34 pm

gluten free and dairy free etc since donkey years

there's plenty of "free from" breads, pasta etc in the supermarkets
a bit more pricy but not less yummy these days

alpro soya drink is my favourite and very often on offer £1 per litre (3 for£3)

glad you had a positive experience
all the best :cow-wave: Lu
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby tonydin » Tue Feb 04, 2014 8:17 pm

hello ice that all soun ds about right the consultant i saw at the norfolk and norwich siad fm was the flip side of the same coin at cfs , just depends on the most prvelerant symptoms , so at least they seem to agree on that .

i work very hard but pace it 10 to 15 mins work 2 to 5 mins break( dont tell the boss ) this way i achive more than most people with out a illness but pian is always there as is a lesser amount of fatige , and i never really recover just function

as i retire 3 years hopefully i wont have to worry about ATOS lables :lol: but you never know

take care tony
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby LouLou » Wed Feb 05, 2014 11:58 am

Hi ISM

Great to see you on here again.

The Doctor you saw sounds to me like he has done his research and is trying to link what he has read to a new plan for you to see if that helps. As we all know with FM different things help different people and what one person can tolerate someone else can't.

I suppose all you can do is give things a go and see - you never know what may help and you don't have anything to lose. I haven't heard about the alpha lipoic acid before so would be very interested to see if this helps you in any way?

Vitamin D - having low levels of this can cause joint pain and fatigue. My GP tested mine way back when he was investigating things and found my levels were really really low. Though he was convinced I had FM he wanted to see if increased Vitamin D levels helped ease my pain and fatigue.

I have to say that though the fatigue did seem better the pain levels were no different.

Diet - oh yes I too am a real foodie and I love my pasta/rice/chunky sliced toast but having IBS my stomach couldn't always handle the food I wanted. Like Lu says you can get so much more of a variety of "free" from foods these days and I too agree that you can;t taste the difference.

I also switched from white to wholemeal pasta/rice and bread which is not only more filling but doesn't leave me feeling sluggish afterwards.

Good Luck ISM, please post updates when you can as I'd love to hear how you're getting on.

xx
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby Iceskatemum » Fri Feb 07, 2014 12:36 am

Thanks for the good wishes folks & yes LouLou its good to be back even if a little more hap hazard than I used to .

Still haven't managed to track down my Alpha Lipoic acid (ALA) but am making a special trip to town to a bigger health food shop which I've been told has them ....probably would have been better getting them off the net but old habits die hard.lol

Was wondering if anyone uses a heart monitor and could give recommendations. Have been looking at Fitbits which get a good review but would take any personal recommendations on board given the expenditure and outlay that might be needed.

Am waiting to see if I can talk to my GP after the Dr sends his report , she is usually very busy so getting an appointment could take a while so would suggest some things like the Vit D results might be delayed until next month.

Can't get my head around the "diet" all of my children have grown up with various intolerances and I have to say that we do tend to have specialist food around the house . My problem...... I've tried it and its a big massive fail :puke:
Soya milk on cereal just results in me making faces that could win a gurning contest but then again my children feel the same about dairy products ( although they do seem to have got a liking for ice cream and white chocolate .....in small amounts of course :lol: )

Will let those that are interested know how things progress but would imagine that it could be a long process.
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby zappa20 » Fri Feb 07, 2014 2:28 am

Iceskatemum wrote:
Still haven't managed to track down my Alpha Lipoic acid (ALA) but am making a special trip to town to a bigger health food shop which I've been told has them ....probably would have been better getting them off the net but old habits die hard.lol
.


I only ever buy ALA or any of these things from Nature's Best online as they're a samll British company with excellent British quality control. Postage is free for 3 to 5 days delivery , but I found by paying £1 for Royal Mail postage they arrive within 24 to 48 hours of placing the order.They ahd ALA on special offer last month so I bought 2 lots.
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Re: Another trip to the Doctors .....thumbs up!...its long s

Postby Iceskatemum » Fri Feb 07, 2014 3:00 pm

Very Many Thanks Zappa, will give it a try, as given the fatigue couldn't be bothered trying to track them down in town. :-D
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