Hi
Don’t think my last post posted!
Just a wee question. What exactly is peripheral arthritis?
Marie
Wee question: Hi Don’t think my last post posted... - NRAS
Wee question
Written by
Eiram50
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Hi Marie.
It did post but I can't answer your question I'm afraid...sorry!
Paul
I saw that - not sure what happened?!
Thank you for taking the time to respond Paul.
Marie
Hi Eiram,
Hope you're having a good day.
Peripheral Arthritis is one of the types of Arthritis most strongly linked to Inflammatory Bowel Disease.
Peripheral Arthritis tends to affect large joints like the knees, elbows, hips etc. It doesn't tend to effect the fingers or toes too much like other forms of Arthritis.
Most people only get diagnosed with Peripheral Arthritis when they have a pre-existing inflammatory Bowel Disease diagnosis.
Does your friend also suffer from Crohns Disease, Irritable Bowel Syndrome? Something like that?
From what I've learned Peripheral Arthritis is very closely linked to diet. Please pass on the following link to your friend. She may find it useful:
phoenixhelix.com/2017/11/11...
The good news is that Peripheral Arthritis is generally nowhere near as severe as RA. Joint damage in Peripheral Arthritis also does not tend to occur.
Hopefully she feels better soon.
How dare you claim that Chron's disease is linked to diet., it's genetic .....you being a self proclaimed "expert" is insulting and quite frankly very ignorant to others.,...You have No idea about auto immune diseases, or genetic diseases... you're healthy...but somehow you are an expert....now you want people with Chron's to suffer with your "knowledge" too. .... .You've been studing autoimmune diseases for about 10 months now...tsk tsk... give your head a shake....Learn to be nice to people with autoimmune diseases....who knows? Maybe one day you will be diagnosed with an autoimmune disease and your "WEALTH OF KNOWLEDGE" will bite you in the arse.... ... Have you ever heard of "KARMA"? Becareful....Karma does bite.
Cherub what was all that about ?
Hi
I too ( on behalf of my friend) felt very insulted and dismissed with the reply to the question. She doesn’t have crohns and regardless is in a lot of pain and had sustained significant damage to her hands and feet.
I’m going to have to applaud sue in her response, I think it needed to be said.
Marie
Also, a little knowledge can be a dangerous thing and it may be that not being a specialist ( and trained/ qualified), a lot of the joining of the dots are being missed??
This worries me a bit in regards to people who are just beginning their journey, looking for support, advice and guidance?
Just feels like the boundary between being supportive and helpful can be sometimes blurred with certain responses?
On a lighter note I mistaked your lovely Scottish slang and read this as a wee question ... was expecting something on the lines
'Why is my wee orange while taking sulfalazine' haha
Haha!
Crikey! 
Peripheral arthritis is the diagnosis that my cousin's wife has. Apparently it is an "add on" to her crohn's disease. When her crohn's isn't controlled, the inflammation affects her joints. Hope this helps you
Thanks sue. She’s not diagnosed with anything other thuan PA, as of yet. What I do know is she’s always been fit as a fiddle, always enjoyed a mostly veg based and healthy diet but finds herself greatly debilitated and in pain x
I'm sorry to hear this Marie. Chrons is a horrible genetically linked, auto immune disease. I hope your friend does not have it. People with Chrons have to follow a strict diet, not to "cure" their disease, but to survive it.
Diet does not cause Chrons, a gene in your body does.
I don't know if there's a backstory but did Allsop really deserve such a stinging rebuke? I'm not sure that I want to be part of a community that can be so attacking. Surely there are ways to express even vehement differences of opinion without being so unkind?
Some here upheld the ideal of respecting opposing views during the recent Paddison/diets thread but seem to have forgotten that?
I have to disagree on a few fronts. I find this community extremely supportive and never “attacking.” However, it can be very difficult when things are so close to home to have strong statements made that appear to minimise ones experience and knowledge of their own disease . As you will know, none of these diseases are a one fits all and being battered by research that seems to only support the position of the one pushing it, can be quite jarring, hurtful and for those just at the beginning of their journeys , confusing , contradictory ( re own medical advice) and somewhat frightening?
There is a bit for me if you make statements that feel dismissive and undermining of people’s personal experiences, quoting research that is only perhaps one bit of a puzzle ( and it’s a different puzzle for all), then there is a risk that this may be very upsetting to others?
Having said this, we all benefit from research and experience shared and long may that continue, it’s maybe more about the delivery, in some cases?
Marie
Sometimes I do come across as harsh...but I stand up & support the victims of horrible genetic diseases.... "miracle diet cures" cause alot of pain & suffering to people that are already suffering. My cousin's wife almost died on the operating table as the doctors where removing 1/4 of her bowel. She's 28 & now wears an ostomy bag....don't you think she would rather eat veggies and use a toilet if "diet" was a cure?
Taking baby steps, following new research, is not a question of promoting miracle cures, it's a way of gaining more information of what is happening in our bodies, how dietary modifications affect our metabolism and immunesystem. How malfunctions in our bodies connect to our disease and so on.
With the accumulating new knowledge we can hopefully find new ways of controlling our disease or even reversing it. New knowledge and understanding also help us to have a meaningful dialog with doctors who treat us. All too often we leave everything in the hands of doctors and nurses. We feel totally helpless and often stressed out and unfortunately also too often are treated by specialists as not worth their respect. Which is seen in keeping vital information from the patient or not helping the patient to understand test results or treatment goals, risks, adverse effects and statistics.
So we do need information, to educate ourself as well as we need compashion and empathy that this forum so well offers to fellow sufferers. Sorry for the long rant. xxSimba
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Merely 'echoing'/ underscoring what you've just noted, Witness2:
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Merely for calm reflection 😌 💭 💭 .
Re-noting what was at previous post, 'Latest research' ( healthunlocked.com/nras/pos... ) :
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" . . .
Hopefully 🙏 we can all inch toward trying to better:
. . . • understanding 🤔 😌
. . . • respect 🙏 😌
. . . • cooperate 🤝 ☺️
. . . • support 🤗 👍 . . . each other
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and allow
. . . • misunderstanding 🤥 😠
. . . • disrespect 😏 😡
. . . • lack of cooperation 😒 😤
. . . • lack of support 😑 👎 . . . fall wayside.
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😌 🙏
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After all, "We're ALL in the same boat". 🚣♀️ . . . 😳 😯 🤔
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We can all glide forward by harmoniously paddling together ( giphy.com/gifs/vwSFfOidA44J... )in the same direction, ➡️➡️➡️ or continue paddling in opposite ⬅️➡️ directions getting nowhere: giphy.com/gifs/A1X9yoUAjwts...
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[Or, strangely 😳, some (choose to) strike each other over the head 😖🏏 with the paddle and poke holes 🔪🕳 💦 . . .🔪🕳 💦 . . . in the communal boat 🚣♀️ . 😨 . . . To what end? 😳 . . . Sinking their own boat? 🤦♂️ . . . 😯 . . . 😂 🙃 ]
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. . . all the while . . . getting nowhere . . . wasting time . . . giphy.com/gifs/l0MYOUI5XfRk...
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🤦♀️ "
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Hi Kai - am only catching up now as 'stuff' got in the way ... so i missed al these rants etc but can understand a bit of the underlying stresses that lead us to rant [have done a bit in my time here LOL]. everything i'm reading is making links between gut and illness, inc crohns, ibs, RA etc etc... - agree tho there's a way to go yet for answers . best to all of you.. back on circuit of bloods, xraya, CT scans etc etc for the mo
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Naw, not ‘ranting’ — merely trying to communicate ’clearly/ humorously’, per usual, GranAmie. ☺️ 🙏
We know how that goes — falls flat on its face in a mound of muddle . . . 🤦♂️ 🤦♀️ 😂 😂 😂
(Think the humour of it all, get’s lost in the ‘verbiage’ . . . 🙃 Oh well . . . 🤷♂️ 🤦♀️ )
Yes, yes , yes . . . the whole shebang (gut and illness — Crohn’s, IBS, RA. etc.) all "gut rooted". 👍👍
Exactly, there’s a way to go yet to get answers. In meantime though, there’s scads of good info to jumpstart our research. 👍👍
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Are the bloods, x-rays, CT scans, part of ‘routine follow-up’ (if you don’t mind my asking, GranAmie) or are bits ‘n pieces breaking & falling off? 🤔 😳
[Are you familiar with "Krazy glue" ( amazon.co.uk/Krazy-Glue-All... )? Don’t know if Krazy glue will help put back together any broken pieces? 🤔 Sometimes ‘just a dab’ll do ya’. ☺️
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If just "catching up" after a spell away, please ensure you’re sitting down before reading further.
Sad news on beloved, Crusee ( healthunlocked.com/nras/pos... ). 😔 Don’t know if you remember or encountered her in your ‘reads’, but she was truly a genuinely, lovely, funny lady. 💃 😌 Her passing was a harsh reminder of the fragility of life & how we should take good & loving care. 🙏 😥 😭
[Thankfully, we’ve her loving, caring words to reflect back on to bring us a gentle smile. ☺️ 🙏 ]
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Now, I *hope* your taking good & loving care of yourself Granny Weatherwax? 🧙♀️
Hoping no ‘monkey business’ going on with the ole’ bod. 🙏 😌
[Don’t know if "Krazy glue" works on ‘crazy people’ 🤪 (?) so kindly be sure to let us know.? 😆 ]
Every little bit helps in putting the pieces back together again — just like Humpty Dumpty 🥚 . 🤯
Please take good & loving care, dear lady. 😌 🙏 🍀 🌺 🌞
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Now now Kai - did I say YOU were ranting ...?!?. I have missed your wit n wisdom... Sad news indeed re Crusee RIP or emerge in better shape nxt time round. Sorry if that offends people on here; we all have varied beliefs.
No bits falling off yet AFAIK but they're muttering here abt biologics ... and you know how reluctant I am. You take care too XOX
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Oops, misunderstood, GranAmie! 🙃
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Yes, indeed beloved Crusee can come back in any form she’d like. 🙏 😌
A happy healthy 2-legged 👫 bouncing off 2 sturdy, pain-free legs, or perhaps a family 4-legged 🐈 🐩 🦔 pampered, spoiled, & loved 💗 to bits . . . ☺️
Hmm . . . any preferences? 🤔
[If we come back as our beloveds’ 4-leggeds, we’d have ‘run of the house’ 🏡 , around-the-clock 🕓 staff of personal servants 👨👩👧👦👨👩👦👦👨👩👧👧 catering to our every whim, outstanding healthcare 👩⚕️👨⚕️, ‘the best’ food 🥫🥫, unlimited attention 👩❤️👩💑👨❤️👨 ‘n belly rubs . . . 😂 ☺️ 😊 ]
Now how could Crusee pass up such an offer?! 🙏 😌
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Biologic mutterings . . . I know . . . I know . . . 😌 🙏
Don’t know if you’ve had a chance to explore any of AARA ’s references? (Something might strike a chord 🎵 ? 🤔 )
[Have personally found videos 📹 helpful in trying to figure things out — found tips, clues, & ‘dodging bullets’. 😳 Lots of parallel, eye-poppingly 😳 similar experiences to one’s own. Can’t tell you the number of times I nearly fell off chair hearing ‘my experience’ come out of someone else’s mouth.🤯 . . . Spo o o o ky . . . 👻 ]
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Don’t forget to check under chair 💺 , sofa 🛋 , bed 🛏 for any broken, fallen off bits — that’s where they usually end up ‘kicked ‘n rolled under’ — waiting to be found & glued back on. 🤣 🙃
Hang in there, GranAmie. 😌 🙏 🍀 🌺 🌞
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Allsopps answer to the very short simple question was exactly what you find when you google "peripheral arthritis."It is often connected to Chrons and diet is important in its treatment since absorption of nutrients is very deficient. So what is the commotion about?
We really do need Allsopp on this forum🤗We know how hard it is keeping a jour with recent reasearch when we are in pain and our brain is soggy with fatigue. Allsopp is not only helping his wife but goes to the trouble of shareing his findings with us, keeping up a hopeful atmosphare. I am sure a great number of us appreciate his effort🙏🏻xxSimba
I feel I was clear that the sharing of information/ research was always welcome and I’m sure I speak for most where that’s concerned .
Again, my feelings are that as much as this is needed, so is sensitivity, respect for others thoughts and feelings as well as where they may be at any given point in time.
Like anything, there’s a way of delivering things that allows for others to “hear” it.
Having a different point of view and sharing information is great, and I feel we should always be open to views. However, in a written forum language is very important. Sometimes you can write what in your head sounds like a passionate explanation, but it can come across as hectoring. But hopefully we are all old enough to cope...
Isn't that a reciprocal thing though? Respect and sensitivity? Your last two paragraphs Eiram seem to contradict the tone of Cherub's post. I feel huge sympathy for anyone afflicted by all conditions and I imagine Allsop does also. He/she was simply providing info he/she thought could be useful. I don't know this person but if we chase off contributors with such force, we're not practising what we preach in my opinion. I also got fed up with the Paddison Preaching for example but no way would I have been that aggressive. Let's think twice about the effect of any heartfelt rants on the person who posted something with which we happen to disagree.
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Back on topic:
Speaking solely for myself, I share the variety of resources (from various sources) that have helped (& continue to help) me along the way. PP has been (& continues to be) one of those foundational 🆓 resources that helps me. And, I've kindly been allowed (by the forums I participate in for 2+ years) to continue to share ALL of those various resources (videos, articles, podcasts, recipes, tools, references/ links, humour, etc) on various topics (to include PP). 🙏 😌
I neither 'preach' nor push my experiences or 🆓 resources onto others. 🙏 😌
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Related aside:
Sadly, other diet/ lifestyle-ers (PP & otherwise) have been effectively driven from the forum (Anyone on the "Paddison Program Forum"?: healthunlocked.com/nras/pos... ).
Many people whom I'd learned from, shared information with, communed with, & appreciated . . . are long gone (or fallen silent) because of unpleasant behaviours that continue to rear its ugly head 👹 .
I, too, see the same patterns of behaviour continuing & suspect the same 'fleeing of new voices' (along with their shared ideas/ fresh perspectives) will also be the result. 😳 😧
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Again, merely 'echoing'/ underscoring what you've just noted, Witness2, with an additional perspective:
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It appears, what some individuals perceive as mere "sharing of information", others perceive as "preaching"? 🤔
'Sharing' & 'preaching' appear to be 'in the eye 👁 of the beholder' — at least as far as 'talking about' PP is concerned — said with a good-natured 😌 , kind-hearted 💓 wink & a smile. ☺️ 🙏 [Life is all about how we see things. Context is everything. Perspective is everything.: healthunlocked.com/nras/pos.... ]
I'm guessing/ speculating culture, 'frames of reference', language, 'pre-conceived notions', etc. play a significant part in these 'differing' perceptions. Vastly different 'interpretations' of meaning & intent. 😳 😯 What one individual takes great umbrage to, another finds perfectly innocuous/ 'innocent' . . . 🤷♀️ 🤷♂️
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[Merely a small example, many folks apologise for "ranting" when sharing an experience. Yet, I'm continually perplexed & re-reading their text looking 🔍 👀 for "the rant". All I see (filtered through my culture, frame of reference, language, etc.) is someone calmly, logically explaining/ describing an experience in a calm, factual way. I'm continually stumped 😳/ dumbfounded 😲 on what the "rant part" is?! 🤔 I can't see it no matter how hard I look 👁 👁 🔎 🔎 🔎 . Through my filter 👓 👀 , it's very, very, very funny 😂 🤣 🙃 . Such a mild, restrained, explanation is considered "a rant". It would be like someone apologising for tepid tap water🚰 for being 'scalding hot' 🔥 or a delicate butterfly landing on a finger 🦋 👈 as being "exceedingly heavy" 🏋 or a slice of cucumber 🥒 as being "spicey" 🌶 . . . 😳 🤣 It's just too darn funny. 🤣 (Please, anyone, kindly feel free to 'rant' to your hearts 💓 content . . . It'll never 'register' with me . . . 😄 🙃 ]
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Related Aside. Overlaps with posts:
. . . • 'Wee question': healthunlocked.com/nras/pos...
. . . • 'CBD Oil / Cannabis use': healthunlocked.com/nras/pos...
. . . • 'Latest research': healthunlocked.com/nras/pos...
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For clarity, for anyone who still believes the persistent misrepresentations of diet/ lifestyles (d/l) approaches (noted in replies above & elsewhere) . . . 🤦♀️ 🤦♂️
🔵 Diet/ lifestyles & meds are not mutually exclusive.
We can do both simultaneously.
[How this old chestnut 🌰 persists to this day (years later), is astonishing 😯 , bewildering 😧. I guess if enough people repeat the same falsehood over & over, it eventually becomes 'fact' in some people's mind. 😂 ]
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🔵 Diet/ lifestyle-ers work cooperatively, respectfully, sensibly, hand-in-hand 🤝 with our (frequently much-loved) rheumatologist 👩⚕️👨⚕️ .
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🔵 Diet/ lifestyle approach does not mean dietary (food) changes alone.
It means lifestyle (exercise, 'thinking'/psychological) changes too, also done hand-in-hand 🤝 .
It's a multi-pronged approach, thus, diet and lifestyle and meds . . .
[How this, too, can be so commonly misunderstood is equally astonishing 😯 , bewildering 😧.]
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🔵 Dietary changes are done in graduated, methodical, well-thought out phases under our rheums. continual monitoring & watchful eye.
(Meaning, you don't live on "rainwater 💦 & grubs 🐛" for the remainder of your days — deprived of 'normal food'. 😂 😂 😂 ) Your food palette (& taste palate) broadens out — over time — as your ability to tolerate foods broadens out. You don't live a life of deprivation/ starvation denied delicious, tasty, satisfyingly pleasurable meals. . . Quite the contrary. 🙏
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. . . 👉 Following a legitimate d/l process, the dietary phases are well thought out, nutritionally complete/ balanced ⚖️. [Merely 1 example, I'm familiar with: Quinoa, Buckwheat, Sweet Potatoes, Leafy Greens, . . . 'Baseline Phase' of PP Diet Fulfills Nutritional Requirements (Diverse & Complete): healthunlocked.com/nras/pos... ]
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. . . 👉 Stress reduction/ relaxation techniques are adaptable & doable toward individual needs/ preferences. [Merely other examples, I'm familiar with: Meditation, Mindfulness, Movement, Breathing, Relaxation, Stress Reduction . . .: healthunlocked.com/nras/pos.... ]
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. . . 👉 Movement/ exercise is also adaptable & doable toward individual needs/ preferences. [Merely other examples, I'm familiar with: Gentle Chair Yoga for RA, X-Ray Yoga for Wonderment: healthunlocked.com/nras/pos... ]
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[Additionally: People aren't 'dropping dead' because they've implemented a d/l process. And, they certainly know how to 'change course' if something they're ingesting (or doing) in the moment doesn't agree with them. And, most people possess enough sense to seek medical advise if they're uncertain or confused about something. Just as with meds, we're monitored; if something is problematic, we change course with medical supervision. To reduce everything to 'the lowest common denominator' or 'worst-case scenario', to roll out 'scare tactics' to frighten people away from attempting to help themselves (& to use their own gawd-given common sense) is underestimating the majority of 'reasonable' individual's abilities to 'think for themselves' & to help themselves. It infantilises & renders helpless perfectly capable, reasonable, thinking, competent adults.]
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🔴 Misconceptions, mistruths — 'lies' 🤥 — perpetuated by people who 'should know better' are remarkable, breathtaking — as they appear to be intentionally(?) misleading the uninformed, the ill-informed . . . 😳 😯 😧 The only question is WHY? 😯 🤔 😳 🔴
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Aside (hopefully helpful) thought for reflection:
To anyone seriously seeking to understand & research a d/l processes, kindly consider this bit of blather [also from 'Latest research' ( healthunlocked.com/nras/pos... ]:
“ . . . To anyone whose managed to read down this far (without keeling over 📏 giphy.com/gifs/m8I1SgaK2YgQ... & dying 😵 from eye-popping tedium 🙄 giphy.com/gifs/5eAo0ouUn8qg... ): 😂
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Kindly 😌 , please 🙏 , please 🙏 , be very thoughtful 🤔 , reflective 🤔 , pondering 🤔 of anything you read or hear.
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. . . 🙏 Always "consider the source". 🤔
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. . . 🙏 Always use your own mind 🙇♀️ 🙇 , your own gawd-given 😇 ability to reason 🤓 — to think things through logically — step by step 👣 . . . . 1️⃣ 2️⃣ 3️⃣ 4️⃣ 🔠 🔡
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. . . 🙏 Always share your information/ thoughts with a trusted, rational 'thinking' 🤓 , supportive loved one(s) 👩❤️👩💑👨❤️👨 so you can come to a sensible decision (by talking things through 🗣 💬 💬 ) to tailor a course of action that best suits your particular needs.
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Do your "due diligence". ⚖️ 🕵️♀️ 👨🏫 👩💻 🔎 🗣 🙇
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Think 🙇♀️ , think 🙇 , THINK 🙇♀️ . . . giphy.com/gifs/3og0ID5AW1Sm...
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🤔 🤔 🤔 giphy.com/gifs/l0O9xrBecp7T... . . . "
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As a person who no longer comes here much due to having Sjögren’s rather than RA - I find this thread concerning.
I usually stick to communities where a few people don’t hijack my posts with reams of links or offer me unsought advice on diet or alternatives. This is not because I don’t want to try alternative therapies. But I like to do my own research. After all we are discouraged from advising others on what medicines may be appropriate on here so the same should surely apply to alternatives ie diet.
My observation is in line with Helix’s. It may seem helpful to tell someone that their symptoms are mild and non erosive compared to RA and present this as good news. However if you have an equally serious related autoimmune disease already then this kind of thoughtless comment can provoke ire.
Sensitive wording is very important on these communities because there can often be overlapping autoimmunity. So seeming to minimise one person’s symptoms or diagnosis over another - even unwittingly - can cause distress and lead to angry outbursts.
For instance when someone suggests that Sjögren’s is just dry eyes and mouth I can find myself responding in a very cutting manner in order to set the record straight because mine is very systemic and neurological and I won’t see it be minimised to just Sicca Syndrome. Which isn’t to minimise the effect of severe Sicca but just to point out this isn’t the same thing as Sjögren’s.
So a better reply to this question - which I saw on my daily HU feed and was interested in - would be simply, “I believe peripheral arthritis is most often associated with inflammatory bowel disease”, and then leave it at that.
nomoreheels in reply to
Thank you Twitchy. I've purposefully not become involved with the type of posts you mention lately for fear of my thoughts being misinterpreted & possibly inflaming the situation, definitely not needed right now.
We see here again a post with a simple question being taken over with unrequested dietary advice, other than being directly related to the condition concerned. Also I think what may be rubbing people up the wrong way is how we're being given advice contrary to the very people who's care we're under. That years of learning is considered outdated & irrelevant. That it isn't acknowledged our Rheumys are continually learning, which is a necessary part of practicing. Neither is there acknowledgement of appraisal & revalidation, another necessary part of practising, rather knocking the profession as a whole, generalising the whole Speciality. It's all rather different to looking on the Internet & as someone else said failing to join up the dots. We're given advice, which of course we can take or not, though I'd like to think we're sensible & knowledgeable enough to determine which is appropriate for us personally or not. What if the information given doesn't work, what recourse is there? It's as you say the same should apply to diet as it does to meds. What isn't considered is if the information given in fact suitable for our particular condition, we all know it's not a one size fits all so what may be appropriate for the one person being guided may be totally wrong for another. Simba recently updated on a year-old post about how she struggled with her health after trying an AIP diet which turned out wasn't suitable for her. It caused hypoglycaemia, hypothyroidism, zero cholesterol & high cortisol. This because of a change in diet regularly recommended here. In fact she says never again will she try a diet just because it's worked for many, but is it known for how many it's similarly not worked & directly causing not inconseqencial issues.
Grump over & I apologise Marie for going off subject.
Hello NMH,
I seldom agree with you, as you well know, but here in my opinion, you are bringing forth an essential point that is not very often talked about when dietary modifications and different diets are discussed. Before you start a diet you really need to know how your body is functioning, of eventual dysfunctions, their gravity, your deficiencies and so on. Unfortunately you seldom get help with this since rheumatologists are concentrated on RA symptoms and how to use meds to suppress them. This is what functional integrated medicine is trying to change and hopefully succeeds with in the future.
Not until you really know what the state of affairs is with your body should you proceed to take care of what can be fixed and if you find dietary measures that directly target what needs to be targeted in your situation, then they can be of help. All too often diets are infact treated just as superficially as taking meds, while they are strong players in disease which I and many others have learned the hard way. I am becoming constantly more aware how much you need professional help by your side to make this assessment of your health, someone who wants to see your individual history and situation holisticly.
So now I imagine I have overstepped all the boudries Twitchytoes has been concerned about, sorry for that. The topic felt so central😊 Simba
I don’t really see why things are always so polarised between these two camps on here? Why does anyone feel the need to promote certain lifestyle choices over others? Surely this is not what we come looking for by joining a HealthUnlocked community? And yet it has been this way here since I first joined under another name in 2011 when misdiagnosed with RA for five years?
It must surely chase new members away. I certainly find it very off putting to have to wade through reams of links and emojis and in between read hurt, angry comments from those who feel judged by others in some way?
What I know is that someone posted here with a straight forward question about something that interested me. What I then read was initially of interest too and felt relevant to the question ie there is a connection between peripheral arthritis and IBD. I didn’t know this so was pleased to learn because I have shades of both, as yet not formally diagnosed but to be looked at by gastroenterologist at the request of my connective tissue disease team.
What I went on to read was someone who seemed to be saying that IBS and IBD are same thing and that, if you get the IBD controlled through diet then the peripheral arthritis will probably also resolve.
This suggested to me, and clearly to the irate responder, Sue, that having IBD and Peripheral Arthritis as a combination is relatively good news compared to having RA - because it can be apparently be treated through diet. A link was also provided.
It may not have been the intention of the poster to offend by suggesting that IBD can be controlled through diet - but it’s how it read to me as an observer.
Again, I think that simply saying peripheral arthritis is associated with IBD would easily have sufficed.
Simba I think you were one of those I responded to when Sicca was assumed to be the same as Sjögren’s in a post on Thyroid UK? This is another community where sweeping and potentially dangerous advice is often disseminated about diets, doctors, supplements and drugs and where people often plump for self diagnoses and set themselves up as self proclaimed experts. I and other friends with Hypothyroidism avoid this community now because there are so many people telling others what supplements to take, how to self diagnose and self medicate etc. It’s bad for my hypertension to read all this!
I too tried the AIP diet and fell very ill on it earlier this year. I am seeing an NHS dietician for support in trying the Fodmap diet next month but am not overly optimistic because I think I have neurogenic bowel disorder rather than IBS or IBD.
So I would never be guided by anyone here on what foods may or may not help my own autoimmunity or digestive disorder again. It is my experience that one size never fits all. I no more want to be told that I should live on plants than to be told that I should take Methotrexate again. I may chose to live on plants or take Methotrexate or both but that’s my business and I would certainly never presume to tell others here to do so.
I like the idea of the holistic approach of course! And I think most doctors would opt for it too if they had the time and funds. But the reality is that most of us have to become experts in the workings of our own bodies in order to make any progress. It’s not the NHS or medical profession’s fault that they can’t look at us holistically because the reality is that they just haven’t got time!!
And my worry about functionalists is that they are essentially business people and there’s no guarantee that they will have our best interests at heart.
Cherub198889 in reply to
I must apologize for my outburst and take a deep breath before responding with anger. It was past midnight on this side of the pond when I responded. I had spent the day with family, including the person that suffers with Chron's disease.
People that are the victims of genetic and/or autoimmune diseases are always being told it's their fault. Healthy people informing people suffering with illness that diet or childhood trauma is the reason for their illness is just wrong.
Being constantly told it's ones own fault for disease in no way helps a person who is suffering. How can a person stuggling with disease keep their job if their boss believes it's because the employee doesn't eat enough parsley?.(this was said to me)
Just my thoughts
Sue
Totally understand x
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