Silly Question 3 (Ra)

[designerstubble]

What does rheumatoid arthritis feel like?

I can't ignore my arms anymore. I have had sore arms for about 5 weeks, mainly from the elbow down. It started in one arm, then seemed to swap to the other... Now it's in both (though worse in one)... It makes lifting things hard. It's worse in the morning and I get pins and needles in my arms through the night. One arm Wales me up through stiffness.

I also have a burning and numb sensation in the toes of one foot when I walk for more than 30 mins.

I went shopping today and carried a few light bags. My arm almost froze/locked. It's the first time I felt real pain in one of my elbow joints. The rest if the time it feels more like my forearm muscles aching and stiff.

I'm really worried, I just read up on RA... It seems I have all the symptoms. I wanted to check with you guys before I go into full blown panic.

Could low vit d cause this? I know the 2 are linked.

[designerstubble]

That should of said 'wakes' not Wales

[shadowicewolf]

Ever consider carpal tunnel? There is another one i've heard of that affects the elbow as well, can't remember what its called though..

 

It doesn't just occur in the wrists, it can be the whole arm.

[designerstubble]

Yes thanks shadow, I have got carpel on one wrist... I didn't know it affected further up too? Funnily enough I have been doing a lot of cooking lately (lots of peeling veg!) I did just put it down to that at first... But it surely can't last that long if it was just a bit of tendon strain.

I just had a hot bath and wonder as it seems to have eased off slightly...

Thanks for replying

I'm fighting it, if it is RA. I refuse to have it!

[shadowicewolf]

Yeah, because it affects the tendons in the wrist, to my understanding, it travels all the way up.

[designerstubble]

Yeah, because it affects the tendons in the wrist, to my understanding, it travels all the way up.

I shall look it up thank you. I hope you're right!

[nvsmom]

I have had sudden onset joint pain like that many times in the past. It would appear in fingers, hands, elbows, or shoulders after a period of feeling unwell. It also is accompanied by fatigue and hair loss. I am pretty sure it is autoimmune related but I am not sure if it is celiac, thyroid or related to something else. My last "attack" was when I began thyroid replacement hormones after being gluten-free for two months. It lasted a few months and started to clear up after six months gluten-free. I am now eight months gluten-free and I just have stiffness. That used to happen once or twice a year.... I waiting to see if it will happen again or if my thyroid meds or being gluten-free cured it.

Celiac, and many other AI diseases cause arthritic like joint pain. If you are concerned, keep a detailed journal of your symptoms like how it began, what activities it affects, any swelling or redness, what helps it and what affects it negatively. Take that into a doctor and ask to see a rheumy.

In the meantime, look through the different causes of joint pain and maybe you'll find a better match than RA.

Best wishes.

[designerstubble]

I have had sudden onset joint pain like that many times in the past. It would appear in fingers, hands, elbows, or shoulders after a period of feeling unwell. It also is accompanied by fatigue and hair loss. I am pretty sure it is autoimmune related but I am not sure if it is celiac, thyroid or related to something else. My last "attack" was when I began thyroid replacement hormones after being gluten-free for two months. It lasted a few months and started to clear up after six months gluten-free. I am now eight months gluten-free and I just have stiffness. That used to happen once or twice a year.... I waiting to see if it will happen again or if my thyroid meds or being gluten-free cured it.

Celiac, and many other AI diseases cause arthritic like joint pain. If you are concerned, keep a detailed journal of your symptoms like how it began, what activities it affects, any swelling or redness, what helps it and what affects it negatively. Take that into a doctor and ask to see a rheumy.

In the meantime, look through the different causes of joint pain and maybe you'll find a better match than RA.

Best wishes.

Thanks nvsmom

I see you had yours before your diagnosis? I also had a week of bad fatigue on the first week of it though I have no idea if its related... It did seem to come from nowhere. I am so surprised at what has happened to me since I went gluten free, although I feel 'better' (prob because I am treating the anaemia)... I have so many more problems now. I have never been more 'unfit'.

I am going to start my food and symptom log again, i know many think that it's too early days to worry about keeping records but I think I have so many probs that I really need to keep track of it all.

Thanks for your help and for answering

I will keep positive

Tbh the reason it scares me is because my aunty at the same age as me was struck down with extremely severe RA. It came from nowhere a couple of years after the birth of her son (I have a young boy too). She was completely disabled within 5 years she lived in agony for years and led a very debilitated life. It's funny, before she died I found out she had trouble with oats. I now wonder if she also had celiac poor thing and remained undiagnosed.

[GottaSki]

Inflammation causes joint and muscular pain. I tested negative on rheumy blood tests for decades - SED, CRP, etc. YET....I consistently had worsening muscle and joint pain to the point that I could no longer function.

It is my belief that the damage caused by long undiagnosed Celiac was the cause of all of my autoimmune symptoms. It took a very long time for me to figure out what foods are safe for me. If your pain is increasing and you are certain you have removed all gluten from your diet - Nicole is correct - document both food and symptoms.

For me high lectin foods are problematic - grains, dairy, legumes, nigghtshades, nuts, seeds and eggs - but of these the nightshades (tomato, potato, all peppers except ground black pepper and eggplant) directly cause severe joint/muscle pain. Histamine containing and histamine inducing foods seem to be a large factor in reducing my overall inflammation and pain.

I know you are still getting used to living without gluten, so for now don't remove anything else unless you note a problem with a particular food. If your AI type symptoms continue it may be time to look to other foods.

In the meantime - it can't hurt to have your primary run Rhuemy bloodwork. It may provide some comfort to have those results.

Hang in there - I know how frustrating and downright scary unresolved pain can be - but it can get much better.

Oh - I still can't get my muscles and joints moving without regular epsom salt bathes - I use 1.5 cups in very hot water for 15 mins every morning. I don't recall you mentioning any itchy skin - but certain foods give me the creepy crawly type itch - when that happens I add .5 cup of baking soda to my epsom bath.

[mushroom]

Low Vit. D is common in both RA and celiac disease, and celiac and RA (or RA-type symptoms) often go together.  I am not diagnosed celiac (never tested) but do have psoriatic arthritis which first started with very stiff hands in the mornings, pain in the elbows, fingers, neck and shoulders, toes, and in the balls of my feet (in that deep joint!).  I always tested negative for rheumatoid factor, but very high on the inflammation tests (sed rate, CRP).

 

Like my 'cousin' Lisa above, I am both a gluten and lectin intolerant and have had to eliminate nightshades, soy, corn, legumes, as well as gluten, but it has mostly controlled my RA which would have me crying and writhing in pain on the worst nights, so no, you don't want to go down that path.  Get yourself tested for rheumatoid factor, Westergren sed rate, C-Reactive Protein - these are typical preliminary testing for RA, and any other tests your PCP will run for you that seem relevant.  And do let us know the results.

[designerstubble]

Inflammation causes joint and muscular pain. I tested negative on rheumy blood tests for decades - SED, CRP, etc. YET....I consistently had worsening muscle and joint pain to the point that I could no longer function.

It is my belief that the damage caused by long undiagnosed Celiac was the cause of all of my autoimmune symptoms. It took a very long time for me to figure out what foods are safe for me. If your pain is increasing and you are certain you have removed all gluten from your diet - Nicole is correct - document both food and symptoms.

For me high lectin foods are problematic - grains, dairy, legumes, nigghtshades, nuts, seeds and eggs - but of these the nightshades (tomato, potato, all peppers except ground black pepper and eggplant) directly cause severe joint/muscle pain. Histamine containing and histamine inducing foods seem to be a large factor in reducing my overall inflammation and pain.

I know you are still getting used to living without gluten, so for now don't remove anything else unless you note a problem with a particular food. If your AI type symptoms continue it may be time to look to other foods.

In the meantime - it can't hurt to have your primary run Rhuemy bloodwork. It may provide some comfort to have those results.

Hang in there - I know how frustrating and downright scary unresolved pain can be - but it can get much better.

Oh - I still can't get my muscles and joints moving without regular epsom salt bathes - I use 1.5 cups in very hot water for 15 mins every morning. I don't recall you mentioning any itchy skin - but certain foods give me the creepy crawly type itch - when that happens I add .5 cup of baking soda to my epsom bath.

Thanks Lisa

I didn't realise your problems were with RA, I thought they were more 'celiac' symptom related. What a nightmare, I truly sympathise. I've been looking up lectins etc after this post of yours... I hope I don't have to cut them out as they probably make up 50 percent of my virtually non existent diet at the moment.

I will see how I go I guess for a bit.

What kind of pain do you get?? Someone told me that arthritic pain was often 'hot'. Do you get pain just in the joints or are the tendons and muscles affected too?

My arms feel a little better. But literally a just s little bit. I tried to pick up a shopping bag today but my arm would not let me. So I washed the floor instead. With pain. Ugh!

Everyone has said to me if its arthritis then a hot bath will help. Hot baths defo help. But I'm still hoping its not arthritis! Ever the optimist! I'm hoping its RSI from the increased amount of veg chopping (I juice everyday too),that I've been doing in the last few weeks!

Being gluten free has been easy tbh. Cutting out other food like corn dairy etc and the rest that cause allergies has been the hardest.

I had my SED rate done a few weeks ago... It was 1.

Do you have all over pain or is it just various joints?

Sorry to be so nosey, I know everyone is different but it's just helpful to know all possibilities!

Thanks again Lisa... Hope you continue to beat this thing

[designerstubble]

Low Vit. D is common in both RA and celiac disease, and celiac and RA (or RA-type symptoms) often go together. I am not diagnosed celiac (never tested) but do have psoriatic arthritis which first started with very stiff hands in the mornings, pain in the elbows, fingers, neck and shoulders, toes, and in the balls of my feet (in that deep joint!). I always tested negative for rheumatoid factor, but very high on the inflammation tests (sed rate, CRP).

Like my 'cousin' Lisa above, I am both a gluten and lectin intolerant and have had to eliminate nightshades, soy, corn, legumes, as well as gluten, but it has mostly controlled my RA which would have me crying and writhing in pain on the worst nights, so no, you don't want to go down that path. Get yourself tested for rheumatoid factor, Westergren sed rate, C-Reactive Protein - these are typical preliminary testing for RA, and any other tests your PCP will run for you that seem relevant. And do let us know the results.

Thanks mushroom

I will get tested, I have organised a docs appt next week. I will request these specific tests and let you know. My SED rate was low a few weeks ago but I can't remember if I had started with this flare up or not.

I'll be gutted to eliminate nightshades... There'll be nothing left then to eat!

May I ask a question about the pain?... Was it a constant aching pain in the joints and/or muscles. Did it ever go away for a few hours and come back? Did it restrict all movement or only some? What kind of pain was it?

Sorry you know what it's like... It's just one thing after another for me, allergies included!

Aaaaaaaagh!

Thanks for you help, really appreciated. And very pleased you are controlling this. My goodness what do you eat?!!

[GottaSki]

Mine looked, walked and talked like RA with no inflammation markers in my blood.  Daughter was diagnosed RA at 13.  Son only gets really "hot" knees.

 

Over the past 30 years or more my joint weakness and pain increased -- no doc could figure out and I have a very high threshold of pain so didn't complain as often and loudly as I should have.  At my worst every joint was affected -- now that I am improving I mainly have trouble with my shoulders, hips and ankles -- which is bad first thing when I rise so I go straight to an epsom salt soak for 15 minutes than am good to go until evening -- unless I accidently ingest something on my no-no list.  I also have severe muscle pain -- that started in my thirties and was the reason I eventually was unable to function -- pain I could handle/manage -- when your muscles don't work -- you are a human ameba

 

I wont lie -- removing all the foods I did was very tough -- but now that time has passed an I am finally achieving health I can honestly say it doesn't bother me -- I get pissed when I can't taste what I am cooking or baking but I have teenagers and their friends any time I need a taste test.

 

My husband and I went camping last weekend and I was worried it would be difficult to eat -- HA!  It was much easier to pack and cook my current diet than the old "convenience" and packaged foods.

 

I do miss potato chips something fierce -- but hubby makes me sweet potato fries or chips when I get really grumpy and it cheers me right up.

 

Get all the proper testing done -- remember I only had to remove all these foods when my docs failed to diagnose Celiac for 43 years!  Many Rhuemys still don't see Celiac Disease as an autoimmune disease, where I happen to believe it is the likely cause of many of the other AIs, but I am not a doctor.

 

PS...edited to add -- I have been gluten-free for four years now and my "bad" knees that would pop out if the wind blew by them are now very strong and my severe low back pain disappeared about two years gluten-free -- some things were improved with the strict removal of gluten only - given time.

[mushroom]

I was variously diagnosed with fibromyalgia, polymyalgia rheumatica (that's what they said my dad had), non-RF rheumatoid arthritis, and finally psoriatic arthritis when the psoriasis showed up.  I did always have very high sed rate and CRP readings, but some of that could have been from the gut, too.  The pain varied from the cramping stiffness to the dull aching (yes, in all the connective tissue and muscles, too) to the sharp, stabbing, electrical-type pain which would zing into my toes and fingers.  At times I had difficult walking because of the pain in my feet, but mostly it was not constant.  It would flare and recede at random.  But the joints were getting progressively affected - could not hold a coffee cup in one hand because I could not bring thumb and forefinger to meet, let alone make a fist.  Fingers were bent but I kept massaging them and straightening them out and keeping the joints working, and today the affected fingers just look a little bit fatter than the others and only one joint won't bend all the way.  Toes are still fat, too    I had difficulty carrying things, obviously.

 

My rheumy in US does not believe in the celiac-RA connection, told me had never had a patient with celiac.  I asked him how many he had tested?  A:  None.    So I wondered how he was going to find them - trip over them?    I said, well now you have at least one.  Fortunately, my rheumy here knows about it and she said (by the time I found her) what a pity it was too late to test me, because I went gluten free after knowing someone who treats his ankylosing spondylitis with a gluten free diet and thought I would try it, little dreaming of the additional benefits I would experience, and horrified at what subsequently happened to me when I ate gluten.

 

As for what I eat, I just start with the letter A, and we have almonds, asparagus, avocados, apricots, apples, arugula, ahi tuna.... lots of yummy stuff out there without looking far.  It gets easier the longer you go, once you stop thinking about the things you can't eat and only about the things you can.  There is very little I yearn for now, maybe croissants and sourdough french; in actual fact, most gluteny looking things make me feel slightly nauseous   But yes, no nightshades is a PITA. I will admit it.

[designerstubble]

Ladies. Omg! I have not had Internet connection until now. I have been desperate to reply and thank you both for such detailed replies. Thank you so much. You've both been SO helpful. I hope you both continue on the right road with this dreaded RA. You seem to have gotten somewhere with it all...

My update: joints and muscles in arms still hurt. Hot baths help and do does lots of rest (not always possible though). I have a doctors appt tomorrow, see what he says. I'll try not to be derogatory until after I have seen him!! Lips tight! Today I went to see someone privately and payed lots of money. I wasn't told anything I didn't know (that I have leaky gut and this is probably what is causing my IgE allergies and intolerances etc) but she gave no idea about the RA and possible food groups (lectins, high histamine etc)... She said my RA was probably just hereditary.

So came out slightly disappointed. And she told me to forget about Salicylates being the cause of my recent asthmatic reactions to some foods. Which has stuffed up my well researched theory of what I have been reacting to! Apparently salicylates are in everything so there's no chance I could be allergic... Don't understand I'm afraid.

Am hoping tomorrow goes better. Got it all crossed!

Mushroom I know what you mean about the gluteny things making you feel sick just by looking at them! I shudder when I see a sandwich!

Lisa... Do you exercise? I'd love to start exercising... I'm thinking of doing Tae Kwon Do. It's symbolic. I'm gonna fight back!

[GottaSki]

Yes I exercise as much as possible - wasn't able to do much until November when I removed high histamine and histamine inducing foods. Started with walking - then added skiing back in - then got back on my bike (haven't gotten far on bike as my shoulders are still very fussy) - so I'm sticking mostly with biped rather than bicycle for now - have even been able to run up to a half mile during walks now and my walking buds are having a tough time keeping up.

Start slow - but start and keep moving whenever possible!

I love the idea of Tae Kwon Do - go kick some ....

[gatita]

Oh man, all that arm pain is exactly what I felt most of last year. Shoulders, elbows and biceps all had stabbing pain, like knife jabs. Along with tingling and numb feet and fingers. It was so bad I was prescribed physical therapy, which did nothing. Even swimming hurt.

 

After five months gluten-free, it all vanished!! I am just hoping yours does the same. I have been truly astounded.

 

(BTW, I got glutened this week and bingo, all next day, the same dang pains were back. At least I know now they'll go away soon.)

[GottaSki]

Oh man, all that arm pain is exactly what I felt most of last year. Shoulders, elbows and biceps all had stabbing pain, like knife jabs. Along with tingling and numb feet and fingers. It was so bad I was prescribed physical therapy, which did nothing. Even swimming hurt.

After five months gluten-free, it all vanished!! I am just hoping yours does the same. I have been truly astounded.

(BTW, I got glutened this week and bingo, all next day, the same dang pains were back. At least I know now they'll go away soon.)

Boo - Bingo should be fun - stopped going myself several years ago as it was after the bewitching hour - have to add that back into the calendar

Hoping you are feeling better VERY soon!

Until then - drink lots of water.

[designerstubble]

Yes I exercise as much as possible - wasn't able to do much until November when I removed high histamine and histamine inducing foods. Started with walking - then added skiing back in - then got back on my bike (haven't gotten far on bike as my shoulders are still very fussy) - so I'm sticking mostly with biped rather than bicycle for now - have even been able to run up to a half mile during walks now and my walking buds are having a tough time keeping up.

Start slow - but start and keep moving whenever possible!

I love the idea of Tae Kwon Do - go kick some ....

Thanks Lisa, and guess what... I've just signed myself up to train at a taekwondo class and found out the guy is England Team Captain?!! Aaaaaaagh! First class tonight oh my god what have I done. Walking up a flight of stairs is bad enough!!

Anyway, docs later, fingers crossed they take me seriously. Takecare, keep the running up, I used to run 4 miles everyday before this nasty illness

(I tried skiing 2 weeks ago, dry slopes though, first time ever, awesome fun)

[designerstubble]

Oh man, all that arm pain is exactly what I felt most of last year. Shoulders, elbows and biceps all had stabbing pain, like knife jabs. Along with tingling and numb feet and fingers. It was so bad I was prescribed physical therapy, which did nothing. Even swimming hurt.

After five months gluten-free, it all vanished!! I am just hoping yours does the same. I have been truly astounded.

(BTW, I got glutened this week and bingo, all next day, the same dang pains were back. At least I know now they'll go away soon.)

Hope you feel better soon, poor you.

Thanks for reply, I used have bouts of fibromyalgia previous to diagnosis, and my classic symptoms only appeared 6-12 months before diagnosis too. I think I had latent celiac before or silent (can't remember which one), but I was diagnosed with marsh scale 3, and had been gluten free for 3 months when they biopsied me.

I have been gluten free for 5 months like you... Which is why I'm so upset at having all these problems INCREASING! My intolerances or rather allergies as they are, are increasing weekly. I worry about the asthma attacks and I think I'm getting food paranoia. I fully expected to just get better having given up the gluten and dairy. But the journey continues. Now I just hope to not lose any more food! What amazes me is that I am putting on weight? I either must be healing (but why would I continue with these allergies then??? OR I have a thyroid problem coming on!)

Espero que estas mejor pronto Gatita, abrazos