Early Symptoms - My approach: Six weeks after my first... - NRAS

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Early Symptoms - My approach

alexask profile image
46 Replies

Six weeks after my first swollen finger, achy hands and general pain in my feet - I am trying an elimination diet and various supplements. Am also making a massive effort on Dental health - as well as toothpaste swilling with Xylitol and using an electric water flosser.

Just had a deep filling replaced.

I regard this as an opportunity to try possibly less damaging forms of treatment before going on mainstream meds. Using Voltarol Gel on affected finger and on occasion ibuprofen/aspirin.

At the moment I am trying to exclude:

A) Gluten + Sugar - seems to be a trigger

B) Potatoes, Peppers and tomatoes ( nightshade family) - tomatoes might be ok deseeded and de-skinned

.

C) Lectins - Peanuts seem especially bad, but also beans, peas etc.

D) A1 Milk. Getting A2 Milk and eating Goats cheese or aged European Cheeses (which likely are A2 milk). Next step avoid milk altogether in case of lactose problem. A1 milk rumoured to contain lectins

Diet includes

Apple Cider Vinegar with meals

A) Fish/Salad/Chicken/Avocadoes/ Egg Yolks (well whole duck eggs, but they are mostly all yolk).

B) Some amounts of alcohol (though trying to stop Sunday - Thursday -its Friday)

. Can't say that not drinking helps me that much. However alcohol does diminish my ability to resist late night snacks which is a bad thing.

C) Fish - salmon, sardines

D) Sweet Potatoes

E) Lots of Salad

F) White rice - seems ok at the moment

G) Fruit - Apples

Supplements

Ordered Pregnelone

Vitamin D + K - except at weekends when I am outside a fair bit.

Cod Liver Oil

Turmeric (with Pepper) + Boswellia (not sure of best dose) - take with a fatty meal + Black seed oil ( 500 mg =1/4 of a teaspoon twice a day)

Large amounts of Vitamin B1 - 2 grams!

Probiotic after meals

Black seed oil ( 500 mg =1/4 of a teaspoon twice a day) - think this will work better for women though.

Limit salt and sweat it out on a stationary bike

Goal No food after 7pm

Exercise - Gym Tuesday Thursday running, Stationary bike in evening otherwise. Try and get as much sun as possible

. The days I exercise are generally followed by much better nights.

Magnesium supplement and trying Epsom salt finger bath.

Early bedtime - dim the lights.

Generally 2 meals a day - for me no breakfast during the week

Main finger still swollen after a month. Waiting for the other finger to join in. Pain comes and goes - some nights are ok. Hands are not stiff for long in the morning.

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alexask
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46 Replies
munchybunch profile image
munchybunch

Hi interested they you are taking b1. Is this shown to help? Thanks

AgedCrone profile image
AgedCrone

I'm sorry you have all these symptoms, but until you see a rheumatologist, get some tests done & get a diagnosis, all your dietary/ifestyle efforts may be in vain.

I think one thing we all agree on, on this site, is early diagnosis & treatment is vital to going on to lead as comfortable life as is possible.

Once diagnosed you could start a healthy eating regime with possibly some medication to supplement. Delay could cause irreparable joint damage you could later regret.

So please see a doctor as soon as possible, & take it from there.

alexask profile image
alexask in reply toAgedCrone

Have seen one - as only one finger affected - can not make a diagnosis. Am seeing him again in a couple of weeks. Hopefully still only one finger affected or maybe even getting better.

AgedCrone profile image
AgedCrone in reply toalexask

I'm sure your rheumatologist will have answers once he sees the results of your blood tests,

In the past I have had a Rheumy appointment with no painful joints thinking I was at last on the home straight & could stop medication, only to be told my inflammatory markers were through the roof & ended up on more rather than less drugs.

I know you really want to control your own aches & pains, but do listen to your rheumy along the way. Ignoring RA is a sure way for tears at bedtime.

Simba1992 profile image
Simba1992 in reply toAgedCrone

I think once you are on drugs is hard to say what is what. Reading the blood markers become more arbitary it seems(?!)

Simba1992 profile image
Simba1992

Good for you! I do think there is a window of opportunity when just diagnosed of trying out diet and lifestyle changes instead of jumping to aggressive medication, especially when the onset of RA is not aggressive. Are you seronegative or positive? I tried quite the same changes in my diet when diagnosed, also added LDN ( which you might want to look into ) After three months my symptoms were nearly nonexistent. But very often we have been neglecting other subclinical problems that we have and these may get aggrevated by elimination diets. For me it was my thyroid that I had not been aware of that needed support and the diet was in fact working against it. Checking your thyroid function, D3 leve., B12 and your progesterone/estrogen ( progesterone should be doubble the amount of estrogen, estrogen is very inflammatory in excess) ratio are important often underlying problems. Pregnelone is a very good idea. You might add Niacinamide (B3) very good in many way as well as D3 with K2.Good luck, keep us posted. Simba

alexask profile image
alexask in reply toSimba1992

seronegative. I am a bloke by the way....

Simba1992 profile image
Simba1992 in reply toalexask

The funny thing is that very often in RA excess estrogen in fact is a culprit in men as well. Fat around your belly which is very common in men especially when older, does in fact tell you about excess estrogen. Anti estrogenic food has great benefits. I believe this is one reason why especially men with RA do well on a plant based diet like Paddison.

alexask profile image
alexask in reply toSimba1992

Am concerned my consumption of hoppy ales didn't help me. Don't have a gut though.

Simba1992 profile image
Simba1992 in reply toalexask

😊Probably doesn't. There are some beers without gluten though that might be a litte better.

Simba1992 profile image
Simba1992 in reply toalexask

Here is a page where estrogen dominance is discussed, that may interest you.

raypeatforum.com/community/...

alexask profile image
alexask in reply toSimba1992

Thanks that's useful.

Simba1992 profile image
Simba1992 in reply toalexask

You might find this useful too.

raypeatforum.com/community/...

rab1874 profile image
rab1874

well done im on the paddison diet at the moment and am really enjoying it and im improving apart from having a chest infection at the moment and am on humira and methetrexate 20mgs and hoping to cut back on it at next appointment in 5 months

helixhelix profile image
helixhelix

It does seem that men have more success with diet sometimes, perhaps as also more likely to get a more reactive arthritis as well as Simba's point about eostrogens. Who knows..... but if it helps then it helps! And it's more likely to help if v early.

Not clear whether you have been referred to a rheum and formally diagnosed or not? If not I would recommend you go down this path too in parallel. If by the time you get an appointment you don't need it then you can cancel. But better to have one planned....I went from normal to bedbound in 6 weeks or so. Thankfully I had been referred, so hadn't much longer to wait to be seen.

VeronicaF profile image
VeronicaF

the skipping breakfast is not a good one, I never eat breakfast at all before RA, and that bit didn't stop me getting it, and that's from someone who is now into eating more healthy-diet

GranAmie profile image
GranAmie

Interesting! I too tried elim'n diet and have minimised lectins, alcohol [inflammatory], yeasted breads, sugars, but kept 80% dark choc and fish, otherwise mainly raw veg. Cod liver oil can be a prob tho'. try krill? good luckwith yr efforts

Cheronia profile image
Cheronia

Don't go through all that elimination stuff, just take the short cut a lot of us have done and have a private blood test, I have written about this before. They test 113 foods and how you react to them. The NHS has not caught up and I had no time to waste when I did the test, I was desperate.

Simba1992 profile image
Simba1992 in reply toCheronia

Would love to try a test like that. Cannot get it here in France and they won't send it here from UK:(

Cheronia profile image
Cheronia in reply toSimba1992

Sorry to hear that. My relations in NZ had the same problem but managed to get an American test via an NZ health centre which was the same as the York Test.

Simba1992 profile image
Simba1992 in reply toCheronia

Did try to find something similar in France and did in fact find something but then was a bit discouraged by this article.

bbc.co.uk/programmes/articl...

alexask profile image
alexask in reply toCheronia

ok have ordered a test. Somewhat cheaper than York at £99- Cerascreen.

Simba1992 profile image
Simba1992 in reply toalexask

Hope it works. Keep us posted!

alexask profile image
alexask in reply toSimba1992

Will do. Also cold showers seem to help just before bed. Start warm then cold for 30 seconds.

Simba1992 profile image
Simba1992 in reply toalexask

yaiks!!!

alexask profile image
alexask in reply toSimba1992

The Wim Hof Method. There was some pretty young scandinavian girl that was expounding on this. Had a pretty bad day pain wise, but 15 minutes sweating on the stationary bike followed by a cold shower and slept pretty well. Don't know about you but its the nights that I fear the most.

Simba1992 profile image
Simba1992 in reply toalexask

I really recommend to look into LDN. After starting this around the time I was diagnosed I have been sleeping like a baby! If you really have problems cyproheptadine, an antihistamine that has many health benefits, is worth trying.

Yes swimming in icy water is something I have done, but need a sauna for that!

Here is a link to several studies done on cypro.

raypeatforum.com/community/...

alexask profile image
alexask in reply toSimba1992

My results came back from Cerascreen. It showed an IgE reaction to wheat. And a mild IgG4 reaction to Egg Yolk and Oats. So I will cut out wheat and reduce the others for now. Fortunately only one duck is still laying, so the others in my house can eat those eggs.

Interestingly on the York test review I saw this from Ellie Van Der Berg:

"My results showed an intolerance to eggs and wheat and after cutting them out, my skin condition cleared up considerably and the swelling in my fingers and legs reduced dramatically".

Simba1992 profile image
Simba1992 in reply toalexask

Gluten sensitivity is so very common among AI sufferers. Good thing you got it on paper. Worth eliminating, you'll see the difference in three weeks. Eggs are very common allergens too. I haven't left them out yet, such good nutrients. Still hope I don't have a problem with them.

Cheronia profile image
Cheronia in reply toalexask

That is interesting, I will look at what they do. I do hope it helps you.

Beachwalk profile image
Beachwalk in reply toCheronia

Any suggestions where to go for private blood test

Cheronia profile image
Cheronia in reply toBeachwalk

York Test is excellent they test against 113 foods. There are cheaper tests but you get what you pay for.

Beachwalk profile image
Beachwalk in reply toCheronia

Thank you

cabbie profile image
cabbie

Really admire your approach i hope it helps ...i found sugar & alcohol to aggravate my symptoms. I felt really well for about 8 months..got a bit complacent ouch !! also stress is a trigger im moving house so im doing alot of yoga breathing it helps .

i too, am trying to stave off this dx...i think mine is related to Periodontal disease..I am calling my dentist this morning to get a crown/root canal removed out of my mouth..its caused me problems since i got it (2004)...also begging for Rx mouthwash to kill any remaining bacteria in my mouth...its all frickin' related! My RA put me on Prednisone, 10 mg a day, which i decided to take due to my finger pain/swelling, but nothing else is hurting/swelling. She (Dr) gave me a RA Rx, which i filled at $75 copay, but haven't yet taken. I am trying to fight this on my own! I do NOT think i have full blown RA, I think it is a ravenous bacterial infection that has been dormant in me since the dang root canal gig...Check out Mycoplasma...its a bacterial infection which may be the leading cause of RA and other autoimmune diseases...there are several types--lots of research to do here!

VeronicaF profile image
VeronicaF in reply toneverstopresearching

I had a back tooth taken out not long ago as RA is in that same side of the jaw, but it made no difference

I thought it would, convinced myself but sadly didn't

alexask profile image
alexask in reply toneverstopresearching

Yup could be mycoplasma. That's why I think for some not eating certain foods (or fasting) helps. The mycoplasma can't multiply if those foods are missing.

Mandalou profile image
Mandalou

Hi alexask

Good luck with your diet and I hope you get some relief from your symptoms but what tests have you had done and have you seen a rheumatologist?

I ignored finger pain on my left hand in my middle and index finger for several years and then wham like a truck got slammed with explosive polyarthritis. Completely disabled! Couldn't walk, wash or wipe. Horrendous.

To cut a long story short I had 11 months off work to stabilise on the right regime of meds and now am back at work in a very physically demanding job.

Things aren't perfect because of the damage I suffered with the rampant inflammation but I am very grateful for medical intervention.

I basically just want to tell you that it is commendable you are open to complimentary therapy especially the dental attention but please do not rule out the damage that could be underlying/occurring which might not be obvious to the untrained eye.

When I first joined Health unlocked I read on here that there us no such thing as mild RA.

Diet is great , I'm not poo poohing it but don't allow your conviction to blind you to valuable expert intervention.

All the best Mx

alexask profile image
alexask in reply toMandalou

Thanks. I will not hesitate to seek treatment - all the diet and supplement stuff should at least minimise damage in the meantime. As everyone knows the treatments themselves are not without risks.

Simba1992 profile image
Simba1992 in reply toalexask

It may be that someone on the forum was of the opinion that there is no mild RA but reseach does not agree with this. When RA is still mild I on the contrary do believe alternative treatments have a better chance. But our lives are different and how our RA progresses or calms down is individual, of this we have an abundance of examples. We can only tell our story but it is just one among millions.

Mandalou profile image
Mandalou in reply toSimba1992

Hi Simba,

This wasn’t someone on the Forum that posted their opinion about no such thing as mild RA it was a link to a specialists opinion.

It struck a chord with me when I read this specialists thoughts and in turn when I read alexask’s post I was reminded of it.

alexask sounds like someone who puts effort into their health and lifestyle so

lets not turn this thread of alex’s into the old cherry of diet v traditional medication.

I am very aware its something you have strong beliefs in but equally even you must agree to have symptoms and not get professional opinion would be foolhardy.

Anyway the point is, best of luck to alexask wishing him pain and swelling free and continuous relief however he achieves it.

Mx

Simba1992 profile image
Simba1992 in reply toMandalou

Not so simple as one or the other, in my view.More about timing and being innovative with existing meds, new research and understanding how inflammation and metabolism in ones body is working. There are many things you can do and experiment on if you and your doctor listen to the reactions in your body.

Agoodlife profile image
Agoodlife

Hello again! Happy to have found you! What I found is that I have tried all the things you have. I have gone a bit further exploring biochehemistry and psychology and how more and more dots connect to find a supporting way to approach the immune system.The best help during these years I have received from The well known biochemist Ray Peat. Recommend warmly.

alexask profile image
alexask in reply toAgoodlife

Yes the Ray Peat forum is an interesting read.

Agoodlife profile image
Agoodlife

How are you now.? Hope you are still fighting?

alexask profile image
alexask

Pretty good. As long as I avoid wheat and oats I don't really get many symptoms. It never really progressed beyond a single swollen finger, joint pain and stiff hands in the morning.

I still think that everyone with early symptoms should get a food reaction test. I still think taking Bicarbonate of Soda helps.

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