It seems I am on a soap box today !: Sorry if this is... - NRAS

NRAS

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It seems I am on a soap box today !

Damaged
Damaged

Sorry if this is going to sound preachy but I feel society has become far to dependant on pills and ready solutions. Why is it not used as a last resort? Many of the treatments seem to cause more harm than good. What ever happened to letting our body correct itself? Why are we not spending more effort prevent the onset of these conditions rather than treating symptoms?

I am grateful that my body rejects all these drugs. By enduring several weeks of inflammation my body finally self corrected. It was after stopping all the drugs but that is my bodies reaction and not a recommendation. I am allergic to many things. The not so good part is it leaves very few options. I am hopeful one of our young geniuses stumbles on a solution lol.

If one looks to the history of many medical miracle treatments like shunts, sensors ..they were developed by parents, siblings of patients. The needs provide strong motivators. One never knows where a brilliant idea may come from. I keep watching to see if the guy who developed a method of sharing tremors will develop a similar device for objectively measuring pain! But then again it is purely subjective. It is not just a stimulus but how your body responds to it that matters. We all need to find what works for us individually by sharing how we cope. Who better to ask than someone living with the situation?

I just want to add that there are many successes along the way , even if I tend to talk about the challenges more often. I am impressed by how quickly we can adapt to a new reality, particularly with strong support systems in place.

I am so very grateful to my BC government for funding the patch. It was effective and I managed not to gain to much extra. Now I have all summer to drop the ten pounds . My dogs motivate me to keep walking. It may take awhile but I get there eventually ha ha. I hope you are all well and finding moments of peace.

14 Replies

It's very true in what you say and I am at the stage off ditching all the drugs and trying to let my body try and heel itself because I'm struggling big time at the moment and have taken the step off ordering cannabis oil to see if it works for the pain and if it does I'm ditching all the meds as their doing nothing for me xxx

I am interested to see whether the CBD oil helps. xx

I appreciated your words.

I think ppl want a Panacea. Take this one little pill, and it will take care of the bad, and you don't need to change anything else.

Of course, not all ppl feel this way, but I've noticed in my life that's how most are. They don't want to put in the effort, don't want to subject themselves to the restrictions. And so they place all their hopes on a drug.

Even when it comes to things unrelated to disease. For example, losing weight. All my friends around me complain about wanting to lose weight, but non are willing to put the time and effort into getting more active and eating better, etc. Instead they fall into these fad workouts that guarantee a six pack in 2 weeks. Or worse get on some shady diet pills or regimens. It's sad and angers me. Because who knows what they could accomplish if they tried and kept up with it for a while.

Sorry, I think I'm going in a different direction here. Haha...

x-flies
x-flies in reply to Jesnaskah

I understand your feelings and on something's such as diet pills (money makers), I agree. Unfortunately life is not only a giver but a taker, just as not one size shoe fits all. Now theoretically speaking you may have a certain visual of a certain road if someone were to describe it to you, sadly though you'll never know the twists and turns on that road until you've actually driven down it. I do hope if ever you're unlucky enough to be on it, you won't be too disappointed. Best regards.

But there are some things that you do need drugs for. Type 1 diabetes for instance and I myself would die without hydrocortisone as I have adrenal insufficiency/Addison’s disease.

Clemmie

Damaged
Damaged in reply to Barrister

Wow Barrister, I could not agree more. I am in no way saying drugs are bad. Drugs do save lives everyday. I would happily take a drug and continue taking that drug , if it worked. I am currently trying Xeljanz.

What I am saying is that drugs should not always be the first choice. Also , genetics will determine the effect of the drug on the individual. We need to shift to targeted treatment rather than a one size fits all. This is particularly relevant in Autoimmune conditions. Perhaps they should be classed as Syndrome rather than disease. We share traits but the conditions very dramatically from one person to the next. This is true for two people with same condition ie Lupus, RA, diabetes.. ext

Ive been off my RD drugs for just a few weeks .because of 2 bad infections . The pain and swelling was so bad in that short time .i.m so glad to be back on them .and thats from someone who doesn.t like taking any meds .

Heart problems .cancers .diabetes.thyroid. so many people grateful for meds that help .

In today's world with all the complexities and demands upon us, many people do look for easy answers, not just to health matters but daily living tasks. Life is hard for many people.

We also seem to have lost the importance of time 'just being', relaxing, chatting rather than doing all the time, taking time to cook a meal and share it with our friends /family and so on. Society expects us to be 'on' all the time, long working hours, erosion of working conditions, austerity etc etc

The medical profession , historically created a 'mistique' around their profession, accept , don't question us, I believe this is being dismantled now, but they too must take responsibility for the 'magic pill' solution to all ails.

That said pills do give many people a much improved quality of life, but they are not a panacea, if the pills work take them , but do question and it is your right to be given answers !

Hidden
Hidden

Hi Damaged. I would like to respectfully disagree with you. Some folks are looking for a quick fix, there is no doubt. But not everyone can cure themselves by just stopping their medications.

If they can, excellent, but I wouldn't want someone to think that is the only answer and head into the damage that can result.

Damaged
Damaged in reply to Hidden

That is absolutely right. I in no way intended to give the impression that I am anti drug.

I continually stress that I refer to me specifically. I have many many drug allergies and reactions. I was likely diagnosed very late and again, I react badly to many drugs. I never recommend anyone else stop taking drugs. I would willingly continue with a treatment when it is effective. The only thing I would like to see is individualized treatment. Thank you for helping me clarify.

I seem to have been a lot better after having to stop ra meds because of infections it's strange as I felt so ill when I was on them ?????

Over the 30 years I have been diagnosed with inflammatory arthritis I have had periods of no treatment (often due to pregnancy/breastfeeding) and other times when I have struggled to find anything to work and been really ill which has proved to me I need to have some treatment. Sometimes some of the drugs make you feel more ill than the disease but the right ones can mean a big difference in your quality of life. I hate the trial and error system of finding the right drugs and hope that a more personally tailored solution can be found in time (probably not my lifetime).

Damaged
Damaged in reply to farm123

Perhaps it will be much sooner than you think 🤔Many locations have already begun this approach. The Rebecca McDonald Foundation at Mount Sinai in Toronto is a great example. The founder is a physician affected by RA who developed this program. All genetics, physiology, nutrition, treatment is done on site.

She has managed to put her condition into remission, indefinitely. Or at least for the past twenty years or so. What I like is treatment is targeted or individualized based on DNA.

Yes Damaged I agree with you, your post does sound preachy; I can not agree with your opinion that "Many treatments cause more harm than good". Where are your facts, where is the research findings for this. Many drugs save lives and ease suffering. There are a lot of seriously ill people who use this support group whose life and quality of living depend upon the use of drugs. Your suggested regime of only using drugs as a last resort could cause irreversible harm to some.

People can choose to take or not take prescribed medication and come to decisions based on sound facts, there own experiences and in consultation with the medical teams supporting them.

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