Eiram506 years ago

Hi

I'm sorry to hear about your pain- that's really tough. I don't know how helpful it is but I have AS and peripheral arthritis and have to say, my pain too, is constant. Like you, u don't have what I'd consider good days- just less bad days? I'm now on 3 rd biologic and 20 mg Mtx after having tried everything else - to no affect. Having said this, I do have visible damage . In the past 20 months, I have had both hips replaced, both knees replaced, foot surgery and now to have both elbows done.

My issue is, nothing is slowing the progression of disease down.

It's just such a difficult condition to manage, isn't it?

I wish you all the very best and hopefully, someone will be along

Soon to offer further advice.

Needforname in reply to Eiram506 years ago

Hi Eiram... that's horrible to hear you've gone through so much joint damage. Have you considered the infection possibility? There are many folks who get a root canal removed and their health comes back. I'm thinking it could explain why some of us are not helped by the meds, diets, supplements, etc. Something to consider. Also, have you been checked for lyme via a good test?

I'm most scared of permanent joint damage, especially with the high anti-ccp, which is strongly tied to a more progressive and damaging RA. May I ask.. how do you know the difference between joint pain and joint damage? Do the joints just stop working, or do they just swell up to the point where the damage is inevitable?

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Eiram50 in reply to Needforname6 years ago

Thanks for the response NFN

I haven't been aware of any infection; certainly nothing has been picked up on? Neither have I been tested for Lyme disease. Initially, when investigations began, I was tested for bone cancer, such was the speed of the onset / damage.

The difference between joint pain and joint damage? I'm of the view if there's pain, there is some kind of damage but that may not be entirely accurate? I only know with me, the pain began in my hip. Over the period of 3 months, it went from occasional pain to crippling , I could barely walk. Then my hands swelled and over the course of maybe 2 weeks, my fingers became very deformed - 6 of them cannot really move/ can't make a fist etc. However, I wasn't aware of any pain in my knees and the damage done to them was huge. Hips were replaced (together at same time) and 3 months later, they replaced my knees, together at the same time - so, not sure that this helps answer your question, it that's my experience

Marie

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Needforname in reply to Eiram506 years ago

Wow... I'm blown away that your hands went from being non deformed to deformed in just a couple of weeks? That's crazy! Do you know if your AS and PA move more quickly than RA? I just looked up those two diseases as I wasn't very familiar. You've been through a lot of agony.

I really wanted to give the LDN a full 6 months to see if could work, but after hearing your story, maybe I should go on Methotrexate soon. You've got me concerned that I am playing Russian Roulette. Then again, maybe your diseases are more quickly moving.

Since nothing appears to be working for you, maybe look into LDN. There is a facebook group called "LDN Got Endorphines" that has great information and a larger user base where you can ask questions in you're unfamiliar. Maybe also look into the connection between root canals and auto-immune disorders. Maybe an infection or parasite is the cause of your ailments. Or a thyroid issue. And maybe look into Igenix lyme testing.

I've heard many success stories of folks finding the strangest of culprits... where they try every medicine but find out 10 years later that they had a mold or mercury toxicity, or a bacterial or parasite infections, or lyme disease that wasn't picked up in normal blood labs.

Maybe you've heard all this before. I"m just trying to share some things I've read.

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Danna in reply to Eiram506 years ago

did the pain stop in the hips and knees.

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Eiram50 in reply to Danna6 years ago

after being replaced? Yes

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Simba19926 years ago

I hope you haven't forgotten about D3 (at least 5000iu/day, K2 to assure absorption and high doses of vit.. C ( 2000-3000mg/day) These are both potent infection fighters.

Needforname in reply to Simba19926 years ago

Hi Simba. I have been taking between 3-5k of vitamin D, though I've also read that taking too much of a supplement can cause deficiencies in other vitamins, so one needs to be very careful. I'm also taking a couple tablespoons of borax concentrate a day, which apparently releases calcium from the muscles. I believe calcium and vitamin D have a symbiotic relationship, so there's that as well. I was familiar that the vitamin K2 was necessary, though I haven't been taking it specifically. I was taking a multi-vitamin instead. Do you know how much vitamin K2 I should be taking? There seems to be conflicting info online. Thanks.

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Simba1992 in reply to Needforname6 years ago

Hi Needforname,

Multivitamin tabs usually have too little of everything, unfortunately. I take Solgars 100mg/ day natural K2. It's really a good idea to have your vit.D level tested. Normal level is actually way too low to have a clinical effect. I think the normal is something like 20-30mol whereas in AI patients you should try to get it between 70-80mol. Vit. B complex is also essential, especially B6.😊

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Needforname6 years ago

It's strange... I read so much about all of these miracle herbs and supplements like CBD, borax, turmeric paste, black seed oil, curcumin, magnesium, MSM, etc. I've tried them all, including LDN. It's as if I'm taking nothing at all... no relief whatsoever. It's very strange.

Simba1992 in reply to Needforname6 years ago

Same here, I've tried so many of these and for me the elimination diet with LDN and the important supplements that RA patients usually have a deficiency of is the combination that has helped me control my RA.

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Needforname in reply to Simba19926 years ago

Thanks Simba. I had bloodwork a few months ago that showed I wasn't deficient any vitamins except for vitamin D, though I have since brought that back up. I'll get some K2 though. Thanks.

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helixhelix6 years ago

A couple of thoughts from my own perspective... if you've never managed to get the disease under control then to me you are not flaring, but in a constant state of active disease. For me until I got the disease under some sort of control I was in permanent pain. However, eventually, it did calm down and it's only since then that I've had flares when my normally quiescent RA breaks out and creates merry hell for a while.

Also, I was originally described as having RF negative, anti-CCP positive and non-erosive RA. And for the first 5 years I had no signs of new erosions. However, last year one of my toes got eroded. For about two months I had an extremely painful, hot, bright red and throbbing toe which my GP dismissed as probably the beginning of a bunion. It was only when I saw the rheumy and she looked at it under ultrasound and told me it was eroding. Other joints have been painful, with or without a degree of swelling, for ages with no erosion so for me the only difference I could point to was that my toe felt amazingly angry - can't think of another word to describe it. Swelling alone doesn't necessarily cause damage I think, but only if it is due to synovial fluid washing around.

Even tho' you have a high anti-CCP it sounds as if your pains haven't followed the classic pattern of starting with the small joints of fingers and toes so have your doctors considered AS rather than RA? And if prednisalone does nothing for you then has fibromyalgia been considered?

But your position sounds miserable, so sympathy.

Needforname in reply to helixhelix6 years ago

Thanks for the reply HelixHelix. That is very helpful. So it sounds like if my joints were being drastically damaged it would be more of a stabbing pain. My pain started 16 years ago with stomach pains, which led to surgery. Slowly the stomach got slightly better, but my lower back has been bothering me badly for 14 years. Then a couple years ago my neck and headaches. Now my knees have a very bruissed and constant aching to the point where it hurts to stand long.

My RA doctor is a fool, so asking him anything is like talking to a wall... which is why I have to get my info here and other places. He knows nothing except for the word "Methotrexate". He won't even read the LDN info I provided him. He knows or cares nothing about the possible culprits of RA or getting to the root cause. He finds my attempt at trying to heal my immune system strange, and tells me I'm only inviting more possible damage by not going on the immune suppressant drugs. He may be right about the last part. The tricky thing is trying to figure out how long I should wait on the current route of trying to heal my immune system with LDN and diet. As you know, those of us with positive anti-ccp are more inclined to worse RA symptoms and damage.

I have had slight pain in my ankles and wrists, and sometimes fingers, though mostly back, neck and now knees. My mother has fibromyalgia, though the RA doctor didn't suspect it because I didn't have the sensitive spots in the normal parts of my body I guess.

I don't mean to be so skeptical, though after 14 years of misdiagnosis, dealing with foolish doctors, and being put on meds that causes more problems than they helped, I have little trust in any medical field (both western and natural).

Anyway... it's nice to hear form someone else with RA who also had constant pain rather than "flares". Thanks for your insight.

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Jillhigg1 in reply to Needforname6 years ago

Iv had Ra since I was a teen I'm now late fifties. Iv been on most drugs available and mine was always constant pain I never had a pain free day for forty odd year although I still worked , I would cry some nights because I couldn't move once I had sat down , methotrexate in high doses made me really sick lufludeminde made me loose to much weight so I went on the biological route Starting with entenicept (I might have spelt some of these wrong ) now I'm on a infusion called retuximab which I have two infusions two week apart every six month and ten mil of methotrexate a week and I am at a point of bearable pain considering what I was like before , about four and a half month then as it's wearing off I get worse until my next infusion , Iv been on this now for about two year I just hope it keeps working , your doctor don't sound very good if all he's saying is methotrexate if I could avoid that drug I most certainly would and I do have time off it if I can as it's horrible a dirty drug it's been called by many people

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Needforname in reply to Jillhigg16 years ago

Hey Jill. Sounds like you've been through a lot. Sorry to hear. Since I posted my question, I've been put on methotrexate. It's only been one week and I feel no different. Still in pain. The LDN I was on for 3 months prior unfortunately didn't help either. I ended up with permanent bone damage in many joints. I had to stop the prednisone because it was bothering my stomach and not helping with pain. Nothing I every try helps. Sounds like you can relate.

You mentioned infusions. That's interesting. My friend received flu vaccine many years ago and it didn't do well on his immune system. He spent the next 15 years basically as a cripple. Last year or so though, he had some stem cell infusion treatments up in Chicago. He has since been doing much better and looks a lot better. He was skin and bones and had to walk with a walker. Now he can job at a slow pace.

Is this similar to what you are having done, do you know? Is it painful? How does the treatment work exactly? Is it for RA? Does insurance over it? Also, I though biologics were very expensive ($50k a year)... how can you afford it...or does insurance cover it? And have you tried LDN? Many say it works for them.. and it doesn't have all of the nasty side effects. Maybe something to consider if you haven't.

Sorry for so many questions... I find this interesting. My doctors seem clueless to any treatments outside of writing a prescription... so I have to do a lot of info gathering in forums like this one. Anyway... thank you for your time.

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nomoreheels6 years ago

Hiya NFN. I'm so sorry you're in such pain, it must be very wearing. If you were already on meds I would say they're not fined tuned to your specific disease/severity but as you've delayed starting them I'd say please do, you'll have a good few weeks to wait to notice improvement but it'll be unlikely if you don't. If you've been searching online about MTX then you're probably concerned about side effects, it's a common thing to do, understandable even, but there's no guarantee you'll have any, or if you do for many they reduce or even go the longer you take it. I inject & I've just less appetite & a little more tired the following day (today as it happens!). I had some hair loss when I first started it but it was only noticeable to me & my hairdresser & the bonus is the regrowth is wavy so it makes my fine hair look thicker than it ever has. Also folic acid is prescribed to help replenish the folate lost (MTX is a folate antagonist), relative to the more common side effects, mouth ulcers & hair loss so if you're prescribed enough folic acid that should take care of those but it's so personal, what one person experiences you may not.

I appreciate you've chosen to try non traditional meds but they don't seem to be working. I think most of us would recommend starting your MTX, let it work on the disease for a good while, even until you're well controlled. If you choose to once you've experienced being controlled, attempt to go back to what's not working now if you really prefer to go the non med route. I don't know if you're aware how DMARDs work but they're intended to suppress your immune system because it's working overtime, but, MTX isn't overly suppressive, not as much as biologics for instance but it still works particularly in the early stages of the disease, longer term too for those like me. Did your Rheumy take the time to explain about it or give you a leaflet about MTX? If not maybe a read of this may be helpful nras.org.uk/methotrexate-in.... It was written for patients in the UK so the folic acid dose recommendations may differ, I believe it's more common to prescribe 1mg tablets in the US but I think the rest applies. Or, talk through your concerns with your Rheumy, he may even suggest another DMARD, one you'll be more comfortable with taking. I started on hydroxychloroquine, then after that stopped working I went onto MTX, I'm currently on MTX & leflunomide plus NSAID & pain relief for OA.

Is your Rheumy working with you on your present treatments? Just wondering if he's questioning why you're not having drug monitoring bloods taken. You're seronegative, there is the thought that those diagnosed seronegative are less likely to have typical RD, the one we usually relate to, the more common seropositive, though they are treated with the same meds.

I've been on MTX nearly 8 years, diagnosed seropositive 9 & can count on one hand how many flares I've had, one enforced after a delay in a Rheumy reinstating them after returning to the UK from living abroad so I don't really count that one. I've just got over a mini one but I know that was stress related, brought on by the death of a close family member. As you're uncontrolled I wouldn't label how you are as flaring, inflammation is running riot because you've high disease activity due to you being non responsive to your attempts.

There have been lab studies to see if RD can be triggered by a bacterial infection but lab studies are very different from human studies so the jury's out for now, but there's info out there if you wish to search for them. So whether you've not got RD because if a bacterial infection I'm not sure but if you've been diagnosed with RD you've got RD, bacterial infection causal or not. Your Rheumy was thorough with his testing so I'd run with that & treat it accordingly.

That you had a high anti-CCP would indicate that you do have RD, though I think it's likely crossed the mind of many who are diagnosed that maybe they've got it wrong! It's a natural reaction so don't feel you're alone in searching for answers to your questions. The best person to ask of course is your Rheumy. He's the one who's conducted the tests, examined you & read the imaging.

Have you had a look through the NRAS site? The Your Stories section is particularly encouraging nras.org.uk

Take care & I hope you receive nothing but encouragement.

Needforname in reply to nomoreheels6 years ago

Hi Nomoreheals. I greatly appreciate your reply and insights. I'll try to answer your questions...

No, my RA doctor didn't explain much about the RA or Methotrexate. He spends 10 minutes with me and pushes me out the door. I chose to heal my immune system because I've read countless cases of diet and LDN working for people, and they aren't left with the nasty possible side effects of the MTX, etc.

I realize that MTX can be relatively safe for many people, but I've read many horror stories. It increases your chance of heart, brain, liver, stomach disease, can make you lose your hair, can cause brain fog, etc. Even RA drugs are thought to be the cause of death of the band member from the Eagles this past year.

Just like MTX, LDN can take many months to work... which is why I plan on giving it 1 or 2 more months. If it doesn't work by then, I will go the MTX route. My main concern is permanent damage while I wait, though it's a risk either way I suppose.

I really wish I could find a good RA doctor who would at least support me with my decisions. The RA doctor I have is a clueless fool who only knows how to prescribe drugs. He knows nothing about the proven link between dental infection and auto-immune problems, he knows nothing about nutrition and it's role in healing our bodies, he refused to even read up no LDN despite it being just as effective as MTX and without all the side effects. It's mind boggling to me that in 5 minutes I was able to learn about LDN, yet these specialists are clueless and brainwashed by the drug companies. While it may not be working for me yet, it does work for many.

I suppose my skepticism comes from years of phony doctors feeding me lies and misinformation. For example, I was told when I was younger that Accutane was relatively safe, only to find out that it would cause lifelong dry skin and stomach pain, and possibly the cause of my immune system problems. I was told that Prilosec was safe, only to find out years later that it can wreak havoc on our vitamin absorption and is now thought to cause kidney problems. I was told that going on antibiotics for 6 months was fine (never told to take probiotics alongside). I was told that root canals were safe.

I'm not trying to be a pessimist here... I'm just trying to explain why I am so very skeptical of taking drugs and skeptical of doctors. I live in a small community, so I have been unable to find a good RA doctor. My general physician is also clueless with it comes to natural healing, so I'm not on the same page with her either.

I've tried to find a natural doctor, though they've also proved to be quacks who I can not trust. I've wasted thousands over the years on things like biofeedback, chiropractic and the vitamins they try to sell, sound healing, accupuncture, nutritional muscle testing, and on and on. None of it worked on iota. Not sure I trust anything anymore, so it's a tough decision to make. Though inevitably, I may have to take the plunge and go the MTX route.

Thanks for the links and insight. I'm glad you found some relief.

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Hidden6 years ago

Hello needforname. I also seemed to be in a constant flare for over 3 years before i started mtx. My RA is finally calming down.

i understand you wanting to find a cause or reason for this dang RA. This disease does not make any sense so people "cling' to the hope of a reason, so they can be cured. I look upon it as "it is what it is" and I am very grateful for Universities around the world seeking a cure.

I too had dental work (3 root canals) less than a month before my RA symptoms started. When the the mtx kicked in, I noticed that I was feeling some tenderness and pain on 2 of the root canals. I remember complaining to my dentist about this pain and she shrugged it off....needless to say i will be having my #37 (lower molar) root canal extracted on the 8th of Feb because it is infected due to an overfill of gutta percha. I also am seeing an endodontist to fix the #26 (upper molar) root canal. I am having this root canal fixed because my dentist didn't fill one of the canal roots.

Needless to say my rheumy and doctor says that this dental work will help keep my RA controlled along with the mtx. i really want to believe that I've been misdiagnosed with RA, but only time will tell.

My advice to you is to keep seeking the reason "why you got RA?" if this helps you, but don't disregard the dmards that are offered to you.

All the best

Sue

Needforname in reply to Hidden6 years ago

Good advice Suzannedale. I hope your dental work helps with your symptoms. Thanks.

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Hidden in reply to Needforname6 years ago

oh I hope so too. Wouldn't it be nice if 'bad" dental work showed symptoms similar to RA?

Whether it does or does not, I will make a post on the results. I should know by Feb 15 (the date my rheimy has given me)

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Needforname in reply to Hidden6 years ago

Yeah. From my understanding dental infections from root canals or implants can leach bacteria into the blood stream, which can cause the immune system to go haywire, which can result in RA, etc over time in certain folks.

I'm looking forward to hearing you results in a couple weeks.

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Hidden in reply to Needforname6 years ago

Dental infections from root canals can happen if done by an incompetent dentist. Just because a dentist bought the tools does not mean they are qualified to do root canals. I am learning this the hard way. Just because a dentist says you need a root canal, does not mean she should do it. I've learnt that I should of been given a referral to an endodontist for this procedure...grr

Did you have your root canals done before your RA? If so, what was your timeline?

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Needforname in reply to Hidden6 years ago

Honestly, I don't know if I've even had root canals. I have 2 teeth that were pulled, and about 4 teeth with metal fillings. I also have what appears to be a post implant (I can see what appears to be a grey post between my gum and tooth).

Since I had all of these procedures done so long ago, I can't even remember what was done. I was younger and never thought to take a mental note of what was even being done.

I believe Dr Mercola has a video interview of a dentist discussing root canals. I'm pretty sure he says in that video, that all root canals trap bacteria and that there is no way to thoroughly clean the cavity before filling it. And that every extracted root canal will have some sort of infection. I could be wrong, but that's what I remember him saying.

I also think he mentions that even extracted teeth can leave dormant infection because the roots aren't always removed properly. A slow drill needs to be used to go back in and drill out the bulb of the root that was left in.

I've considered going to a thermologist. Apparently they can use a machine that can see infections. I'm not sure how conclusive or accurate these are though. Are you familiar with thermology? I just can't see going to get a tooth pulled without any proof it's a culprit to disease. I do remember though, that the implant looking tooth did bother me for awhile, but no longer does. The gum was once inflamed.

I'm so torn on what route to take. I really don't want to end up with crippled hands and hip / knee replacements, but I've seen the side effects of Methotrexate. It's a tough decision on whether or not to give LDN another month or two (total of 5-6 months), or if I should go on Methotrexate now.

Based on your experience, what route would you take if you were in my shoes? I ask you because you seem pretty informed. Thanks.

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Hidden in reply to Needforname6 years ago

I litrally stumbled upon the dental/RA connection. I am a person who only believes in medical science....then wham bam it was accedently discovered durring a dental cleaning that I needed a root canal extracted. I was referred to an oral surgeon who noticed a problem with another root canal. He said this other root canal looks like it is a breeding ground for bacteria....so back to my dentist to get a referrel to an endodontist. My dentist said the other root canal is healthy. I demanded her to give me a referral to an endodontist. (These referrals are needed in Canada)

The endodontist gave me a pet scan and noticed that a canal in tooth #26 was not filled at all.(Canadian tooth chart is different than the UK)

I've never heard of a thermologist, but my oral surgeon saw an infection on his panoramic 3D xray.

It sounds very odd that you can see the implanted post. My husband had a implanted post and in no way can it be seen.

I would suggest you seek advice from another dentist about your dental post. I would also advise you not to mention the RA/dental work link as dentists like to protect eachother. I wonder if a referral to a periodontist would be your best bet if you live in Canada or the US. (I only know about the Canadian & US medical systems.)

I found out that my root canals were done by a fool because both my oral surgeon and endodontist were upset with the incompetence of my dentist.

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Needforname in reply to Hidden6 years ago

Sorry to hear about your botched root canals. That's a lot of unnecessary pain and money wasted. When you say to not mention the dental / RA connection, then how am I suppose to ask about getting a scan done to look for an infection? I will look into the endodontist you mention. I wasn't familiar, but a quick google search shows that they have 2 years extra education and they perform way more root canals than a regular dentist. Good to know. Thanks.

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Hidden in reply to Needforname6 years ago

In Canada and I assume in the States, the Dental/medical profession is like "the good ole boys club" they all stick together. Just tell your dentist that you have pain around your post and you want a periodontist to look at it. An endodontist is a root canal specailist. I don't think dentists should do root canals. I mean I could of got the same results if a bus driver did my root canals.

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Needforname in reply to Hidden6 years ago

Good to know. Thanks.

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Hidden6 years ago

I hope the University of British Columbia will be writing a paper on me, just like the University of Amsterdam did on another RA victim...Here is the link of the University of Amsterdam on root canal extractions and RA

ncbi.nlm.nih.gov/pubmed/121...

Needforname in reply to Hidden6 years ago

Interesting. Wait... was that linked article about your experience? Did you have RA and were cured by having a root canal removed?

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Hidden in reply to Needforname6 years ago

No no..That link was done on another victim of RA. This is the link that gave me hope as it was done by a University. If getting my root canals extracted gets rid of my RA, then it will be published by a University near me. UBC is the university that my rheumy graduated from and he is well known there.

University studies are reputable all over the world and thus will be taken seriously.

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Needforname in reply to Hidden6 years ago

My bad... I read that backwards. That's good to know that more doctors may learn about this. My dentist hadn't even heard of the correlation which seemed odd to me.

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Hidden in reply to Needforname6 years ago

Well it is rare thank God. I believe if the dentist didn't do the dental work properly then we get sick. I had 3 root canals done less than a month before my RA started. I forgot about the dental pain for the last 4 years because of the severe pain of my RA feet, hands, knees etc. Now that my mtx has started to work, the dental pain is back...makes me think there is a correlation as I now have had a pet scan, and 3d xray noticing that the dental work wasn't done properly.

If my RA goes into remission then I will make it my lifes mission for rheumatologist to ask about recent dental work.

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Hidden6 years ago

I can't advise on whether or not you should take methotrexate or continue with your LDN-and-turmeric alone journey. I read up a lot and see many who have chosen this course and I can't say that that many have found it the miracle that the alternative gurus such as Mercola suggest. If your constant pain is due to Fibromyalgia then this route might well help though and nothing else can sonnothing to lose.

The mind is a powerful tool and if you believe in a treatment then it can help a lot. I tried T3 for my Hypothyroidism last year ab felt amazing for a few months until palpitations took over. Then an NHS endo put up my Levothyroxine and I realised this was what I'd needed all along as successive GPs had lowered it. T3 was just a placebo at best.

I'm now as sceptical about the alternative gurus and their financial vested interests as I am about Big Pharma tbh - although I'm also as open to other possibilities. I take great care over what I eat and drink these days.

But having a high anti-CCP as you do is a fairly specific indicator of RA - and if yours is mainly affecting your larger joints currently then perhaps you do have some experimentation time? But equally RA can do damage very rapidly and aggressively if it chooses - so it is a risk as you know. AS is usually very responsive to steroids I believe and also to physiotherapy/ targeted exercise such as tai chi.

I was wrongly diagnosed with seronegative RA over five years ago. It seems I actually had primary Sjögren's and possible Scleroderma - the latter has yet to be confirmed but the Sjögren's is a certainty. My bilateral joint pain (non erosive) of a few years was Sjögren's mimicing RA it seems. I found that taking AdCal D3 had helped and haven't really had repeat flares of joint pain since starting this and taking methotrexate for a few years - who knows which one helped most - maybe it was a joint effort? .

I do have root canals and about 6 fillings - mostly very old. Sometimes I let paranoia about these get to me - especially as I had several bouts of severe alopecia and many allergies and eczema when I was a child and younger adult and a lot of dental issues throughout my younger years. In fact I have an appointment with a very good oral consultant (the one who ordered my lip biopsy for Sjögren's) in a few weeks time to discuss this.

My thoughts are that I also had a permanent rash around my mouth for much of my childhood and younger adulthood. Now I have telengecstasias where the rash was and burning lips and gums and permanent sensation of crushed mouth . So I have good reason to make this connection between amalgam allergy and autoimmunity.

But all this said, there are other historic explanations I can find that could equally be the reason I now have several autoimmune diseases. And removing dental work carries it's own risks I believe. And if I spend fortunes on getting them removed myself - money I haven't remotely got - only to find that my Sjögren's worsens or triggers Lymphoma - then I'll feel like a prize dork!

So I am now on a 5th DMARD - an immunesuppressant called Mycophenolate. I tried most of the others including methotrexate (2 years) but had too many adverse reactions and severe allergies to make any sustainable. By taking another strong immunesuppressant I know am putting myself at an increased risk of Lymphoma - and with Sjögren's as my primary disease my risk is already significantly higher it would be with any other autoimmune disease. This is why most people with primary Sjögren's aren't usually offered DMARDs apart from Hydroxichloraquine. However I'm tolerating it very well so far - 9 weeks. Still living with constant neuropathic pain though which is draining. But these drugs take a while to work and I'm on a five month trial so we will see.

I choose to live well in the present rather than worry too much about the future. I'm a pragmatist and I don't want to wait and find Scleroderma rearing its head as well - and the pattern of my positive ANA suggests that this and Polymyositis are both more likely for me than other connective tissue diseases. I don't want my kidneys, liver, lungs or heart to be damaged by Sjögren's or Scleroderma either. They aren't yet involved but my nervous system and brain is.

I have OA and severe widespread peripheral neuropathy - which affects a lot of my body now. I also have autonomic issues and some small vessel disease of the brain. As I can't tolerate any of the symptom treaters or other DMARDs, I fear the consequences of being awake most of the night in pain more than I do Lymphoma - which is usually quite a treatable cancer. Basically I am more concerned about the long term effects of living with a rampantly overactive immune system and high levels of inflammation than I am about other stuff. My life, my decision - based largely on genetic factors..

I also have GI issues at both ends and problems swallowing and now some swelling and pain in my salivary glands, small and large and very dry eyes - all strongly asociated with Sjögren's.

I listen hard to my specialists - neurologist and rheumatologists (mine retired) and ask questions. I then make pragmatic decisions accordingly. I do choose to rely on conventional specialists over Mercola etc although I've had my share of rubbish ones. They see all this stuff day in day out at the coal face and their experience, knowledge and instincts are important factors in the equation for me. And they aren't going to make more money from me if I follow their advice.

I hope this helps a bit.

Twitchy

Needforname in reply to Hidden6 years ago

Wow...you've been through a lot. Thanks for sharing your experiences. Did you have the normal dry eyes, etc with the Sjögren's? How did you know to test for it?

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Hidden in reply to Needforname6 years ago

Long story. But I did learn a few years ago that Sjögren's can present exactly like RA. The two diseases are often very overlapping. And yes my eyes have always been rather dry for as long as I can recall, mouth too. But this dryness ramped up around the time my RA symptoms started. Also I had this very painful small fibre neuropathy that none of my doctors would address properly - calling it secondary Raynauds and not really dealing with the impact my deteriorating small nerve fibres were having on my balance and sleep.

Then I moved and moved again and finally, once off all meds including steroids, my ANA turned a clear positive so the new rheumy requested a lip biopsy and bingo - 100% positive. Small and large fibre neuropathy are very much associated with Sjögren's rather than RA.

Things are much better psychologically now I'm confident in my diagnosis. It means I know what to look out for now.

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Hidden6 years ago

Hi NFN - I think when I talk about a flare, it is because no matter how much constant pain one has, there are periods where the pain is much worse. The two worst flares I had were in my hand and one in my foot, and both times I was red and swollen and it felt like I had broken a bone. I would have sworn that I had a break. Now that I am better, my flares are much less dramatic.

To answer your question, yes it is entirely possible for you to be dealing with other things, and it sounds like your RA and pain are not very well controlled. I would suggest that you talk to your Rheumatologist or GP about how bad you are feeling...

Here's hoping you get some resolution soon...

Needforname in reply to Hidden6 years ago

Thanks CaeryIUSA. I have told my RA about the pain. He said... "you'd know it if you had a flare". This kind of irritated me because he seemed to be dismissing the possibility that I wasn't already in a ton of pain. His answer to everything is "Methotrexate". He's entirely clueless when it comes to anything else, so I don't even bother any more. I may just have to go on MTX if the LDN doesn't work.

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Danna6 years ago

Needforname. I was diagnosed in 2013 with it. I explored all the side effects of the medication. One thing that kept coming up was cancer. I told my doctor that in my family cancer was big time high. His reply was " none of my patients have gotten cancer. I went on Methotrexate that made me sick and then two other medications. with in 7 months I had nodules all over my lungs. I then in 2014 I was put on another medication. 7 months later I had skin cancer. In Aug 2016 I was put on another medication. It got rid of the pain I was very sick for 4 months and 5 months later They found another nodule on my lung and I am having a biopsy on it. It is the inflammation you want to keep down that is what cause's the pain. I get aggravated because I see where these meds work for other's and not for me....lol If you find a diet that works let me know. Get a doctor that listens to you. Good luck with this...Danna

Simba1992 in reply to Danna6 years ago

Listened recently to an interesting presentation given by a very prominant doctor. His advice was to take iodine and D vit. to protect from cancer. He explained the mechanisms of action very thoroughly. The best way to go is to test your iodine and D vit. level first to see the dose you need to supplement you deficiency.

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Danna in reply to Simba19926 years ago

My Iodine is in normal ranges, I take vit d everyday and it came in normal range and then all of the sudden it dropped below normal range. Just my luck...lol

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Needforname in reply to Simba19926 years ago

Interesting. I always found that iodine gave me bad acne. I have read about it's health benefits though. Maybe I'll get some, along with some vitamin K2 to take alongside vitamin D.

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Needforname in reply to Danna6 years ago

Hey Danna. Yeah, I always have doctors telling me that SSRI's are safe, Methotrexate is safe, etc. They also told me that Accutane was safe when I was a teenager.... that taking prilosec for 10 years was safe... that 6 months on antibiotics were safe... that root canals are safe. I don't trust doctors, and I can't seem to find one that will listen to me or support my decisions. I've been through so many I've given up. They all seem to be brainwashed by the drug company controlled education systems. And the alternative doctors are quacks who use unproven methods and sell overpriced multi-vitamins that you don't even need.

I'm so sorry that you experienced cancer. There does seem to be a correlation there. Just like there seems to be a correlation between SSRI's and people going crazy. The medical field continues to ignore evidence that's right in front of their face.

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Danna in reply to Needforname6 years ago

I have experienced that. I have too many doctors, it is not funny. I don't like my rheumatologist, or pulmonologist. I have to see a dermatologist every 3 months. I see my regular doctor about once a year and this is how this was caught, Everytime I went in I was told it was my RA. I would go see her and I would get sent to Neurologist and Orthopedics. I think when this is all over I am finding new doctors and when enrollment comes up getting new insurance. Here now they make phone appointments. I don't mind on somethings, but the doctor doesn't see how you are feeling. I had to start taking pictures because nodules were swollen and when I would go the swelling would come down some. So they weren't seeing what I was seeing. I wish we could go back in time and see one doctor and go have test and come back to your doctor...lol and they tell you what is wrong.

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Needforname in reply to Danna6 years ago

Sorry to hear you too have experienced the runaround for a long time. Apologies for my getting a bit pessimistic in my last reply. Living in pain tends to bring that out.

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Hidden in reply to Danna6 years ago

Ahhh - I am so sorry Danna. I had never mentioned the cancer issue in any of my posts about MTX, but I had the same fear. My father and grandfather both died of brain cancer and I wanted no chance of that. I took the MTX for a year and fortunately, didn't have any issues like yours. I wish you all the best in getting them under control..

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Danna in reply to Hidden6 years ago

Thank you. If it can happen, it happens to me...lol This is hard for me. Just because my life is not the same quality of life that I had. I miss my crafts, I really miss working. I hate some days I can't even brush my hair and taking care of myself. That all gets taken away.

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Needforname in reply to Danna6 years ago

I can't imagine. You've been through a horrible experience.

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Danna6 years ago

Hey needforname, I know you ccp is high. Here it would be considered 1.6 which is high. These are my readings since 12/12 3.3 0.8 3.7 1.0 1.5 2.81.1 1.3 1.1 3.9 1.5 1.9 2.8 2.5

it has been normal twice. since 2012. Name

RHEUMATOID FACTOR - IGM,SER,QN

Standard range

<14 IU/mL

one test in July 2012 was 195 and in May 2016 it was 596. There is a test that shows if you have RA but I can't remember right now. RA is a CTD so you could have other CTD's The one thing is that they are all so close together in how you feel. Have them check to make sure. I know what you mean by constant pain. Just a day with no pain would be great. I find days I feel good I over do it and I am worthless for 4 days. Maybe we will come up with something natural with no side effects.

Needforname in reply to Danna6 years ago

Hey Dianna. Am I understanding correctly... you had an anti-ccp level in the 3,000's? When you say 3.7, 3,3, etc, I'm assuming you're country uses a different measurement reading.

From my knowledge, the anti-ccp test is a test to determine if someone has RA. It has a 93% accuracy rate I believe. Though like you mentioned... with one auto immune disease, may be another.

I've had my igg, igm, iga tested, and they were in "normal" ranges, though I've read that it's best to get these results analyzed by a specialist for possible food allergies, etc. Have you ever had any of these things tested like this?

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Danna in reply to Needforname6 years ago

Hey needforname

Yes I have test like that I was going to send you a copy but can't find it. I have never been tested for food allergies. I want to look more into that one test I was talking about. There are some that I have but they all mimic each other. Like right now my ankles are on fire and had problems with my legs all night actually all weekend. Yes my c-protein are that high. Looking up stuff for you will take my mind off tuesday. Have a good day....Danna

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Needforname in reply to Danna6 years ago

If you do find the time, that would be appreciated, though you have enough on your plate, so don't feel obligated please. Best of luck with what every your dealing with Tuesday.

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Danna in reply to Needforname6 years ago

Good morning needforname,

I like to try and help people when I can. These are the test they do for RA. Cyclic Citrullinated Peptide Antibody, ANA, ESR, C-Reactive Protein, Autoantibodies. I will tell you what mine were and some can be normal. My ESR14 mm/hr0 - 20 mm/hr

RHEUMATOID FACTOR - IGM,SER,QN596 IU/mL<14 IU/mL

CITRULLINE ANTIBODY37 Units<20 Units

RHEUMATOID FACTOR, TITER,SER,QNHAS BEEN ADDED

RHEUMATOID FACTORPositive

The rheumatoid factor (RF) test is primarily used to help diagnose rheumatoid arthritis (RA) and to help distinguish RA from other forms of arthritis or other conditions that cause similar symptoms.

While diagnosis of RA relies heavily on the clinical picture, some of the signs and symptoms may not be present or follow a typical pattern, especially early in the disease. Furthermore, the signs and symptoms may not always be clearly identifiable since people with RA may also have other connective tissue disorders or conditions, such as Raynaud phenomenon, scleroderma, autoimmune thyroid disorders, and systemic lupus erythematosis, and display symptoms of these disorders as well. The RF test is one tool among others that can be used to help make a diagnosis when RA is suspected. The Cyclic Citrullinated Peptide Antibody was the test I was talking about. I also have thyroid as well. I hope this helps you out seeing my counts. Tomorrow I am having a bone marrow. I am not sure if it is blood cancer or bone cancer or both that they are looking for. Have a wonderful day....Danna

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Needforname in reply to Danna6 years ago

Hey Danna, thanks for sharing. I'm going to have to compare your readings to mine which are below:

- Rheumatoid factor: negative.

- AntiCCP: positive (1840).

- IGg: 749 (slightly low but not to worry my doc said).

- Complement C4: 12 (which is slightly low but not to worry my doc said).

- ESR: normal

- CRP: normal

- Lupus: negative

---

I was aware of the possibility of having multiple auto-immune problems at once, though my doctor doesn't seem to think it's important to check for anything other than RA. I had to request the lupus testing.

I'm going to have to research the Raynaud phenomenon, etc. I've often wondered if Lyme disease was present, even though I tested negative. My doctor said a negative reading is 100% accurate, but my own research says that's a lie. Many people have been told their lyme negative, only to find out via a better testing method (ex: Igenix), that they actually had lyme all along, which explains why the RA meds never worked.

I've also read about how many people are misdiagnosed regarding thyroid issues. Sometimes apparently folks have an underactive thyroid even when blood labs say otherwise.

Best of luck with your bone marrow procedure. Sounds scary. I hope it's not. You've been through so much. Thank you.

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Danna in reply to Needforname6 years ago

OK this is how my day has gone so far. Larry, took me to the hospital to have my bone marrow done. We go to check in and the first thing she does is spray a bottle of Lysol spray in her office. I start coughing real bad. Then this other woman desides she is going to spray a bottle of Lysol in the waiting room. I couldn't stop them fast enough. I had to get out of there I couldn't breath and was chocking. Larry and I got on the Elevator and my legs started shaking. We got off the elevator I was very unsteady, I don't know how many steps we took, but the next thing I knew is I was on the floor. They wanted me to go to emergency but I didn't want to have to re scheduled my biopsy. So wheel chair bond was I. 6:30 they took me back. This nurse put in an IV and I have never had someone push it in so far, It was the first time Larry has ever heard me scream. During the biopsy the doctor tried to numb me and then started cutting into me. I told her I wasn't numb yet. So She numbed me again. When the doctor was pulling out the bone marrow it took four people to hold me down . It was very painful to me. The medication didn't take effect until the biopsy was done.. Thank God this day is over for me. I am not looking forward to the lung biopsy next Monday after today.

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beeckey6 years ago

I am the same i dont have flares when asked how long i am stiff in the morning i always reply that i am always stiff you are the first person i have heard saying that thought it was just me x

Karen776 years ago

I see you've gotten a lot of replies & am going to be lazy & not read them! I generally feel well or unwell and most of the time I am unwell, it's for up to a year at a time. I have read people say "I had a flare so spent the day in bed" but that is not my situation at all. I basically force myself to participate in life while feeling awful (Moms don't get sick days lol). But then I'll have a year - sometimes longer - of feeling great. Looking forward to the next one!

Needforname in reply to Karen776 years ago

Thanks for sharing your experience Karen. That's great you can have good years. I've never had a day of relief in 14 years. It's amazing how some people's pain comes and goes. Mine is pretty much constant. Interesting.

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Karen77 in reply to Needforname6 years ago

If you go to RA Warrior's blog, she shows a chart to give a sense of how RA affects people differently. Some seem to get it under control and well-managed through medication, some are more on a roller coaster with ups and downs, and some just suffer (which must be your case unfortunately). Anyhow, I hope you're somehow able to find some relief. I turn right miserable when I'm in pain.

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Needforname in reply to Karen776 years ago

I've read all the blogs Karen (including that one), and have tried just about everything. I'm apparently immune to pain relief. I greatly appreciate your mention of the site though. Maybe I'll check it out again. Thanks!

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Danna in reply to Karen776 years ago

Karen I am happy for you 😎

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Danna in reply to Karen776 years ago

OK this is how my day has gone so far. Larry, took me to the hospital to have my bone marrow done. We go to check in and the first thing she does is spray a bottle of Lysol spray in her office. I start coughing real bad. Then this other woman desides she is going to spray a bottle of Lysol in the waiting room. I couldn't stop them fast enough. I had to get out of there I couldn't breath and was chocking. Larry and I got on the Elevator and my legs started shaking. We got off the elevator I was very unsteady, I don't know how many steps we took, but the next thing I knew is I was on the floor. They wanted me to go to emergency but I didn't want to have to re scheduled my biopsy. So wheel chair bond was I. 6:30 they took me back. This nurse put in an IV and I have never had someone push it in so far, It was the first time Larry has ever heard me scream. During the biopsy the doctor tried to numb me and then started cutting into me. I told her I wasn't numb yet. So She numbed me again. When the doctor was pulling out the bone marrow it took four people to hold me down . It was very painful to me. The medication didn't take effect until the biopsy was done.. Thank God this day is over for me. I am not looking forward to the lung biopsy next Monday after today.

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Needforname in reply to Danna6 years ago

Dang...not sure what to say other than wow. Sounded like a traumatic and horrible experience. Sorry to hear

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Danna in reply to Needforname6 years ago

Thank you for your support

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8080 in reply to Danna6 years ago

WOW Danna! So sorry you had to go through that! Is there another hospital that you could go to, other than that torture place you experienced today? That sounds just EXCRUTIATING!! Feel so bad for you.

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Barb666 years ago

Sorry needfornoname but what's LDN?

Needforname in reply to Barb666 years ago

It's "Low Dose Naltrexone" aka "LDN". It's a safer drug option than immune suppressant drugs like Methotrexate. It works for a lot of people, but not for me. I'm trying to remain hopeful though, because like Methotrexate, it can take a few months to finally notice relief.

There's a great facebook group called "Got Endorphins LDN". You can learn more here if you'd like: lowdosenaltrexone.org/

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Katie62216 years ago

Hi,

I'm a little late seeing this post, but I am currently using diet to control my RA and thought I might share some things that have helped me, just in case they might help you! In the end, I truly spend much less money managing my pain through a careful balanced diet, as I don't take pain medications any longer. I also have the advantage of living in the Netherlands, where cannabis is legal, so I use this for pain as well.

Since the start of my flare, I have not had a single day that my left knee was not significantly stiff, swollen, inflamed and full of fluid. And also, needless to say, painful. Some days the pain is better, or at least not constant. Meaning I only feel significant discomfort when I get stuck in one position, or do something that would normally cause it pain (walk too quickly, lean too long, turn knee, etc). Through my independent research, I have found that the signs that come along constant flares can signify that the type of RA is more aggressive than others. I try not to dwell on this too much, as in my eyes, living in a healthy, balanced way with as little stress as possible will be helpful for everyone living with RA.

Now to get to my pain killer foods! Without fail, if I eat a big bunch of fresh parsley, about 1/2 cup, mixed in a salad or in a juice or smoothie, within 45 minutes my pain is as close to gone as it can be. Same goes for a glass of fresh cold pressed pineapple juice, or I assume a pineapple smoothie.

As unfortunate as it is, for me, what has truly helped me in every way (energy, appetite, digestion, sleep, etc) has been eliminating gluten, dairy, red meat, bad fats, and acidic foods (citrus, vinegars). Without fail, each time I slip up and eat one of these foods, even if it's just a tiny tiny amount, the next day I wake up in pain, with my digestive tract angry with me.

This may seem extreme, and I do take supplements and eat a careful specific diet to ensure that I am getting the correct nutrients (supervised by a nutritional therapist) but in the long run, the prospect of healing is much greater when you are taking care of your body as a whole, starting with what you put in it!

Hope this helps. Hope you find relief soon.

Needforname in reply to Katie62216 years ago

Hey Katie. Thanks for sharing. That's great to hear that diet has worked for you. I've noticed a very slight improvement since eating healthier, but not much. You mention fresh parsley... I'll have to try that... though because fresh salads and leafy greens seem to upset my stomach, I'm not sure I can eat much.

The pineapple juice you mention probably still has some bromelain in it, which helps with digestion and the gut I believe. I take bromelain pills. For smoothies, I do Bolthouse farms strawberry bananana. It's non preservative and no sugar added, but is not "fresh" exactly. I add coconut oil, hemp oil, and a gluten free protein powder. I may have to try adding the parsley to that.

I too have eliminated gluten, dairy, most bad fats (does bacon count... they say it's good for you now). I'm going to have to try eliminating red meats. I've lost 7 lbs and I only way 145 since going on this diet. I have a conditioned palette and this is taking some getting use to. I also try to limit night shades.

The strange thing is that nothing food related seems to really effect me, except barley. So it's difficult finding what I'm sensitive to. I can't afford a nutritional therapist, so I'm winging it.

Anyway... thanks for sharing. I'll try to reduce the red meat, add some parsley, etc. Thanks!

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Katie6221 in reply to Needforname6 years ago

Hmm. Have you ever considered using probiotics before meals? If you are having issues with digestion, this might be something to look into. All of the medications and antibiotics that we are given to manage RA do a lot of damage to our healthy gut bacteria. Additionally, highly processed foods and grains also harm these microbiota, so one important way to strengthen the immune system is to work on healing the gut. Also, I notice a big difference in stiffness on days that I skip fish oil. If you don't already take it, I'd give this a try.

Also, I don't use the pineapple juice as a digestive aid, although it is wonderful for that as well! I am under the impression that the high content of vitamin c and easy absorption of nutrients (slow juicing) helps to reduce my pain by reducing inflammation. Obviously this is not the best option for an effective day to day pain killer, but it's a step in the right direction if you find that it works for you. The parsley can be tough to stomach at first if you aren't familiar with the flavor. Start by using it as a garnish and then work your way up! I like to mix it into tuna salad or sprinkle it over potatoes, etc.

Most important, I highly recommend keeping a food journal (as much of a hassle as it is), so that you can also record how you feel the day afterwards in terms of pain, energy, etc. For me, this is the easiest way to ensure that I notice when I react to something negatively.

Also, I just wanted to say that I know using diet as a tool to heal can be so incredibly difficult, and expensive and time consuming and it may not always seem worth it. But in the end, you will only be healthier for it! Healing this way is a process and the results may take some time to show, but just hang on in there and keep fighting the good fight!

Best of luck to you

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Needforname in reply to Katie62216 years ago

Hey Katie. Thanks for the suggestions. Yes, I take probiotics and digestive enzymes daily.

I did take fish oil for a long time, but didn't notice any benefits. I've also read that many fish oils are rancid, which kind of weirded me out. I do consume a lot of coconut and hemp oils though. Maybe I'll try the fish oils again.

I'd like to start juicing again. I need to buy one that works. The one I have doesn't produce much juice and is a pain. Carrot, kale and berry shakes are pretty good.

I should probably start up a food journal again. I did if for a short time, but stopped because I really don't feel any different regardless of what I eat. I kept just writing "pain 7 out of 10" morning, lunch, dinner. I think if the pain fluctuated more, it a journal would be more helpful.

I agree about your mention of diet. It is tough, especially with a conditioned palette for pizza, bread, pasta, etc. I'm going to stick with the healthy eating the best I can. Thanks for your insight.

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lizflodyl in reply to Needforname6 years ago

Yoo Hoo Needforname,

I was diagnosed 18 months ago. I'm 75. Couldn't really believe it. Took Methotrexate for 1 year and am now on Leflunamide. I have bought a book by an American doctor, Tom O'Brian . He deals in functional medicine. Diet is his approach and essentially to heal 'Leaky Gut'. I don't see it as quackery. It may even be working. I have been off gluten for a couple of months also dairy and as little sugar as possible .

My joint pain has significantly reduced and I feel better even though a recent scan showed active inflammation in my left wrist .

I detect some enthusiasm returning that seems to have been absent for quite a long time .

Maybe the Leflunamide is working for me but I think the diet is too. I shall stay off gluten and try reintroducing dairy on a suck it and see basis .

My aim of course is to get off the drugs altogether ! Oh I do take Vitamin D, B and probiotics. My diet is more varied and I keep off junk.

May be helpful and I hope so . Trouble is we are all different

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Needforname in reply to lizflodyl6 years ago

Great to hear you're making some progress Liz. I too have tried the diets for a couple of months and experienced no relief. I recently had to be put on prednisone and will be starting methotrexate soon. Recent x-rays showed bone damage in many joints, so I can't wait for the LDN and diet to work unfortunately. I plan on still eating better though. I recently bought a juicer which should help.

One thing that is strange to me is that nothing seems to help even the slightest for my pain and inflammation. Even the prednisone doesn't work. I often wonder if maybe I have an infection or something that the meds and nutrition can't fix. Just not sure what steps to take to rule that out.

Anyway... thanks for your input and best of luck with your health.

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Brad19866 years ago

I have psoriasis which has turned into psychiatric arthritis an now I have syatica I've been on so many medications from folic acid to medtrexiate injections An loads of other medications which I would tell you but can't get up as I'm in to much pain pa it's amazing how this stupid f------ psoriasis has ruined my life an as a result I'm on medication/steroids injections for the rest of my life An having to use so many different creams An tablets each day an everyday for the rest of my life which stop working after awhile as psoriasis affect your Amun system ps it's incurable too yay

Needforname in reply to Brad19866 years ago

Hey Brad1986. Hope you find some answers or some relief. It does suck. You have a different set of ailments thank I do, but it appears the best answer is to find what (if anything) can work for you. Maybe a mix of meds and change in lifestyle (healthier diet, no drinking, exercise, sunlight). The latter didn't seem to help me much, but it must at least help the body fight. Maybe it just takes time. Best of luck. Keep reading these forums and try different things. Hopefully you'll come across something that works for you.

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kindalikefloyd6 years ago

Is your user name "Need for Name"?? I doubt it - but I put it here so you'd see this if you're following. This reply is for you and for everybody. I wanted YOU to know I'm chronic also. If anyone has a theory about what's wrong with me, please let me know.

You sound like me!!! I haven't been formally diagnosed with anything but have seen the Rheumatoid Doc and many Neurologist and other fields of medicine. I have NO diagnosis but not for lack of trying. I honestly don't know where to go now (after 2.6 years).

Being a user of insulin, none of the doctors want me on a steroid. ** I was bitten by a tick 7 months before my whole body pain and stiffness developed. I have been tested with numerous Lyme tests.(negative), but many are false positives. I never heard of the test you speak of.** Also, the night BEFORE I developed this acutely on my left side, I pulled as hard as I could (straight left and right) to separate 2 pipes. 12 hours later my left side went "out" and I was semi-numb. 14 days later my "right" side went "out" and the right side became semi-numb. ** To confuse matters more, I had 3 vaccinations - 25 days before this (semi-numbness turned to pain).A lawyer convinced me it was vaccinations that caused this so I wasted a year following that theory. Heck, she may be right!! She totally convinced me at the time that that's what caused this. No doctors here in the USA would "buy" into that theory.

The pain is chronic and has gotten steadily worse as time has gone by. I have the tick bite -the vaccinations -the pipes I pulled -and possible PMR to confuse everybody. It has almost gotten me physically about "down". What is really bothering me too is the mental aspect. I know that you know what I mean. ** My diabetes gives the medical people a convenient "out" and they jabber on and on about peripheral neuropathy. I go 65 years with NO diabetic issues and overnight I develop that?? I know it can happen, but my gut instinct is "no". Actually I thing it's an entrapped nerve. After 2 1/2 years, if I had to bet, that's what I'd put my money on. I felt the muscles wrap around a "grab" my spine when I pulled the 2 pipes left and right. It scared me so much I just dropped the pipes. That was 9:30pm. This hit me at 9am the next day!!

Not to be too repetitive, but 14 days later my right side went out overnight. It was precisely and exact. When I say left and right, it was left then right.

I just wanted you to know that there is somebody that's chronic; not 1 second of normalcy in 2.6 years.

You are one tough person to have endured this mess for 14 years. It sounds as if you aren't positive of the real reason either!! God bless you, you deserve an answer!!

The Doctors over here want to call mine "conversion disorder". I'm about nuts from all this, but it ain't in my head (conversion disorder)

I'm too stiff to exercise -such as walking. I finished 34th nationally in the marathon in 1974 in 2 hours 36 minutes. Today I can't walk a 1/2 mile due to the stiffness. I'm almost 68 and fortunately other than diabetes I'm reasonably healthy.

I do fear the lack of exercise and ongoing depression over this mystery is going to get me.

Somehow I'm able to have a positive attitude to work effectively, otherwise this whole "thing" really gets me down. The immediate family really suffers because they've lost "me" to a large extent. I can't "fake it" because I can't do anything - like playing with the grand children etc.

I don't want to do anything or travel because I can't do anything but "grin and bear it" at best .You have to know, wherever you go or whatever you do, it's there.

I am totally cognizant that it's totally unfair to my lovely wife too. If I were her I think I'd leave me because I offer nothing but paying the bills. As a self employed person, I worry about being able to perform at my work. We'd be on the street if I didn't or couldn't work. I know that sounds highly negative - but it's real. Thus far I've made myself do what I have to do, but the point is, if it gets much worse, I won't be able to do my work even trying my hardest. It's very real.I had over 600,00 you tube hits of me playing the piano. I can't play anymore because my hands are so stiff!!

I work with people that have gained disability due to their issues. There's many I wouldn't trade places with. I don't see how they carry on. Hearing their story gives me strength. If they can manage with a problem worse than mine, I can do it to. Also I think my problem helps me empathize with their situation. I try to find a positive wherever I can and I try to be of true help to people. I feel guilty that I gain mental strength from their problems, but I do.

I hope you find out "for sure" what your problem is and are able to reverse it. Just know this guy would love a "lapse" every now and then too.

Does the turmeric help?? do you know if anything helps that not a steroid?? Ha, here I am asking questions and I don't even know for sure (not even close) what's wrong with me.

Any suggestions as to what kind of diagnostic test could help me would be welcomed. Naturally I've had an MRI, but it was clear. Therefore they don't want to do a myelogram. I've had Nerve Conduct test out the wazoo. They show small fiber neuropathy and also large nerve fiber involvement. The Doctors tell me the SFN couldn't cause what I have.

I feel like life is passing me by and I need to make something happen!! My problem is that I absolutely don't know what kinds of doctor to see or what to ask for. I've been to probably 30 in the last 2 1/2 years. 4 hospital systems too.

Everybody just stares now because they've got over 600 pages of records and flat don't know what to do.

This mess had tanked my shoulders, lats, arms and hands and has caused constant squeezing of my torso. The hands are super stiff and have been from Day 1 on the left hand and Day 14 on the right. From Day 1 my knees got stiff. It skipped over my thighs and went from my to flexors to my knees.

Now it affects me from my shoulder level all the way down through my knees. the thighs feel totally wrecked and hurt like the dickens ( as everything does). I am semi numb everywhere too.

No strength (noticeable) has been lost either.

I'll hang it up for now. I've been wanting to write this for 1/2 year but just didn't "have it" in me to sit down and write it.

Thanks to anyone that read this; all suggestions are welcome.

Needforname in reply to kindalikefloyd6 years ago

Hey there. Thanks for the reply. I sympathize with your pain and frustration. Since I've yet to find anything that has worked for me, it is difficult to offer any advise.

With that said, I've read extensively about RA in my search for a remedy. While none of the following has worked for me, it appears some folks have had luck reducing pain and/or inflammation through use of: cbd oil, turmeric paste, low dose naltrexone (LDN), or an elimination diet (ex: Auto Immune Paleo).

If you're unfamiliar with the things just mentioned, there are many resources on the internet that will let you learn more (including this website here, and Facebook groups). I would suggest talking to your doctor before trying anything, especially if you're currently on medications.

Best of luck. I hope you find some answers.

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