RA and heavy, heavy legs. Transition to AP

[raoptimist]

I transitioned to AP eight weeks ago.  While I have inflamation in my fingers and wrists (this was normal before AP), my legs are weak top to bottom.  It's not localized in my knees or ankles.  It's more like complete leg fatigue.

Anyone experience this while making the transition to AP?

 

-Kevin

[Maz]

[user=1947]raoptimist[/user] wrote:

Anyone experience this while making the transition to AP?

 

Kevin, all I can say is a big, “YUP!” Know exactly what you're talking about. In my first year, I found it hard to stand for longer than a couple mins. My legs felt like lead weights. It may be due in part to inflam and lack of circulation, as well as poor lymphatic drainage.

You might find that investing in a portable infrared sauna helps, but also taking other measures to reduce inflam and increase circulation, like lymphatic drainage massage. I also started using fibrinolytic digestive enzymes (Neprinol) to help with inflam, which take a while to kick in, but definitely helped. I can now stand and walk around for a couple hours at a time. Not quite back to 100% and maybe not up to a day of walking around Disney, put it that way….but much, much better. It's a long, slow process and takes a lot of patience.

Peace, Maz

[raoptimist]

Hah — Disneyworld.  That's funny.  You nailed it.  Lead weights.  It's the weirdest and most debilitating feeling.  Heck, I used to run marathons under my old RA regimen.  Now I can barely walk.

I'll check out your suggestions so thanks.  Man, I love this forum.  There are so many unknowns and questions that it's nice to have feedback.

Thanks, Maz!

 

-K

[Kim]

Hey Kevin,

I experienced the same thing with heavy legs and major fatigue, and can't say enough about how much the combination of sauna and enzymes have helped.  I also take Neprinol which is pricey, but worth it.

Hang in there, it does get better……….maybe set your goal for a half-marathon. :roll-laugh:

Take care….kim

[sierrra]

For me, this was a symptom of vitamin D deficiency.

Sierra

[raoptimist]

Marathon?  I'd be happy if I could dance with my wife.  Did you purchase an infra red sauna?  Any recommendations?

Thanks for the feedback, Kim.

 

-Kevin

[linda]

Hi Kevin,

I've heard it described as feeling as tho you're walking thru glue. It's a very common symptom of fibromyalgia, this heavy feeling.
Btw, I lived in Ft. Lewis for 4 yrs, '86-'90. Mt. Rainier 70 miles away and looks like it's in the backyard. I'm envious and sorry for you, if weather affects your symptoms, at the same time. It's so beautiful there, but it was heck on my arthritis! My youngest was born there in 1988. Welcome the the RBF, and hang in there. Just checking, you are taking probiotics, right?

[Kim]

[user=1947]raoptimist[/user] wrote:

Marathon?  I'd be happy if I could dance with my wife.  Did you purchase an infra red sauna?  Any recommendations?

Thanks for the feedback, Kim.

Hey Kevin,

Yea, I'm afraid I'm the one who started the whole sauna craze. :roll-laugh:  Mine is a Saunex and I'm very happy with it.

Maybe not a marathon, but I'll bet you'll be running again. 😉

Take care…..kim

[Sir Rifes alot]

Hey Maz,I am down to a 1.25 mg dose of prednisone and my feet have been inflammated for weeks .I also take MSM 30,000 mg a day.I am going to try lymph massage one more time with a lady here .I also do the 100mg mino 3x a week.I feel like crap .I am going to see my naturopath this tuesday in santa fe 2 hrs away from me .I am going to ask him about neprinol for the inflammation .I cant seem to get the inflammation down and i feel like i am herxing all the time cold chills the whole nine yards .Any suggestions on the inflammation ?do you think neprinol would help my situation ?

thanx chris

[raoptimist]

Yes, Seattle is beautiful.  We're dug in.  Funny, the weather here doesn't seem to affect my RA.

I started on probiotics when I started the AP.  My day is a series of pills and supplements now, but I'm very optimistic.

Thanks, Liinda.

 

-K

[raoptimist]

I see that a lot of people are taking MSM.  I'm not familiar with it.  What should I know?

[linda]

I noticed that you stopped all of your anti-inflammatories; you should be on something for the inflammation or the abx won't be effective. Just don't choose the pred, maybe something OTC would be enough, advil or aleve, but you were on some heavy hitters so I'm worried about a rebound flare for you. Maybe something stronger like Mobic. MSM has been helpful for many but not me, however, I did not take it in the higher dosage.

[Maz]

[user=1701]Sir Rifes alot[/user] wrote:

I am down to a 1.25 mg dose of prednisone and my feet have been inflammated for weeks .I also take MSM 30,000 mg a day.I am going to try lymph massage one more time with a lady here .I also do the 100mg mino 3x a week.I feel like crap .I am going to see my naturopath this tuesday in santa fe 2 hrs away from me .I am going to ask him about neprinol for the inflammation .I cant seem to get the inflammation down and i feel like i am herxing all the time cold chills the whole nine yards .Any suggestions on the inflammation ?do you think neprinol would help my situation ?

Hi Chris,

In all honesty, I think I'd be a bit concerned about taking Neprinol along with MSM in such high doses. This is because the purpose of Neprinol is to thin the blood by reducing fibrin and MSM (in those very high doses) is known to have some blood-thinning action, too, and contraindicated for anyone taking a blood thinner, like coumadin, for example. Kim can share more, but her doc wanted her on the blood thinner, coumadin, for thick, sticky blood and she chose to use Neprinol instead with her doc's approval and it brought her clotting factor to within normal ranges.

High inflammation can definitely be a cause of sticky blood and the bugs seem to love this type of environment, holding fort in bio-films and deep within tissues, which prevents antibiotics from getting to the joints. So, it's important to get inflam down, but to be careful not to cause too much blood thinning, which could lead to problems like ulcer bleed-outs (ulcers can be silent) and other situations where an inability to clot could prove to be quite serious (like a stroke). While trying to thin sticky blood, it's a good idea to keep tabs on your labs for clotting times so as not to take too much of any med or supp used for this purpose, whether it is MSM, Neprinol or a prescription blood thinner.

All that said, if you stop MSM to try Neprinol, then you might want to know that it's quite an expensive product. I've found it worth the cost, but it's cost can be prohibitive, too ($143.99 thru vitacost.com for 300 caps).

http://www.vitacost.com/Arthur-Andrew-Medical-Inc-Neprinol-trade-AFD

Here is some info on Neprinol at this site:

http://www.harvesthealth.com/neafdafide90.html

To be used as a systemic enzyme to reduce inflam, these types of enzymes need to be taken on an empty stomach, otherwise they just act as digestive enzymes. Might be a good idea, as you said, to ask your naturopath which supplement could possibly work better for you…MSM or fibrinolytic digestive enzymes, like Neprinol. There are cheaper substitutes out there for Neprinol. I tried Drs Best Serrapeptase and Nattokinase, for instance, but didn't get the same good results as Neprinol. I wasn't seeing a naturopath, though, who could have given me cheaper alternatives.

Chris, do you think you might be lowering your pred too quickly? I can't remember what dose you were on at start, but as you've only recently changed your mino dose, I wonder if you're now getting a bit of rebound from coming off pred and also herxing. The problem with this kind of situation is you might wind up having some more hypersensitivity issues and have to go back to the drawing board.

Really sorry to hear you're feeling rough again and hope the next round of lymphatic drainage massage helps. :crying:

Peace, Maz

[raoptimist]

I'm taking Advil in the AM and again at night.  It takes the edge off so that I can get get to sleep.

[Sir Rifes alot]

Hey Maz,thanx I totally forgot about the serrapeptase I was taking that months ago! The new naturopath took me off alot of things I was taking months ago and I am now finding out I was on the right track after all damn doctors !!! Well I will get back on that if it doesnt affect anything else i am taking.I had my massage and I am now having the chills up and down my back and I have to cook dinner right now !so i will cut this short will chat later

chris

[Author]

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