Anyone else coping on the "Drug Freeway"? - Arthritis Action

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Anyone else coping on the "Drug Freeway"?

1goldie profile image
17 Replies

Between Polymyalgia, Osteoarthritis, Fibromyalgia,Gout, Rheumatoid arthritis, Lupus and psA, there has been no definitive diagnosis for me only the "looks like" any of the above. This has come from GPs , Pain management consultants, Rheumatology, ultrasound scan, xrays and blood tests. I am now awaiting the results of a third blood test in ten months, and maybe they will be able to "fit me into a box"!. I HAVE been on an acid free and dairy free diet for over a year and have joint flare-ups and very good days without the added complications of side effects. I am in my middle sixties and really worry that should they be able to diagnose any autoimmune disease, then they will insist I go on medication and not monitor me in the future when I refuse. I am from Ireland and only moved to UK 3 years ago when I got married, so I am not familiar with medical protocol as such. I would appreciate any feedback from those of you managing without drugs. I have read Dr John McDougalls websites which were recommended by Kia (thankfully) and studied all of Margaret Hills philosophy.

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helixhelix profile image
helixhelix

I think a lot will depend on how you approach the doctors and explain your thinking. If you just say "no, I don't want to take your advice/drugs" then they may well refer you back to your GP. With rheumatology under immense pressure and people desperate to be seen then one can understand why they might give priority to people who are more receptive to the things that they can offer.

However, if you are clear about what you want monitored (remember the GP can do quite a bit, so need to be able to say what you want that requires specialist input). You also need to be able to explain why you want to try a different pathway to start with, and listen to what they say in response. And perhaps say you are not ruling out a more conventional approach in the future if that is true for you. Then you might get a warmer reception. Many doctors these days are much more open.

1goldie profile image
1goldie in reply to helixhelix

Thankyou helixhelix for reading my post and further appreciate that you took the time to reply. Yes, you hit the nail on the head focusing on my approach and suggestion of chosen words! I would certainly be open about meds in the future for my diagnosis, but just would like time to try the food route first. I have AF and take Pradaxa as I would be foolish to risk clotting. I have always had a very high sensitivity to meds and ended up in casualty when GPs try to find right dosages. Given time the bod found its own way of healing.

Again thankyou for pointing out the GP could do tests. I must have got caught in some system here as everything is thru the Rheumy. Even my blood tests are ordered and my GP told me my results could only be discussed with them as they were not ordered thru surgery. The GP sent me over 2 years ago for Rheumy visit (for which I was very grateful) as being a pianist, I needed hand scans. But now I have been seen 3 times in that period and hopefully get a diagnosis. I don't feel support from any GP in the huge practice as it seems to be symptom addressing without taking in the whole, if you know what I mean .

I read in your previous posts that you too have moved country for the same reason?! I was glad to see you are cracking the French system of healthcare but the 80mile journey was a bit too much! I am just realising that PERHAPS its not so much we have left the systems we know, as the frustration and feeling insecure in learning how the new system works for us.

Hope today is full of laughter 😄

Heacdwrecked profile image
Heacdwrecked

Hi 1goldie

I'm from Ireland and have Fibromyalgia, Gout, Arthritis, Osteoarthritis, Depression, Golfers Elbow and A Rotator Cuff tear just to mention a few of my ailments. I am not taking the myriad of pills that have been offered to me. Don't get me wrong I did try them but they made no difference in fact one of the pills Lyrica had me behaving in a very dangerous way I took all my pills and downed them one night luckily my husband was aware of how depressed I was and caught me. So the pills don't work. I go for the holistic side of things as much as possible. I take Antidepressants they are the first thing offered if you are diagnosed with Fibro and I totally understand why. I don't take the sleeping pills I meditate, and do relaxation exercises. I go for Massage, or Reflexology, once a week I found a centre that does it on a donation basis otherwise I could not afford it. I go to counselling also giving a donation and I do an art class and I surround myself with positive people. It works for me most of the time. I attend a Fibromyalgia support group and its wonderful to meet up with other who experience the same things we do I don't feel quite so isolated. I also completed a wellness course. I think it helped me accept the pain, discomfort, tiredness, depression, and inability to work are all aspects of a chronic condition that I must accept because i will have good days and bad days and that's how it is. I still struggle with acceptance at times but i'm still motoring along if a little slower than before I was a why take one stair when you can take two kind of gal unfortunately i'm more of a snail than a lion these days but that's ok. I hope you find tools that help you deal with what life has dealt you. Take care

Headwrecked

1goldie profile image
1goldie in reply to Heacdwrecked

Aw thankyou Headwrecked for the lovely response. I am sorry to hear all your ailments but I am delighted to hear you are looking after yourself in joining groups and getting knowledge. I love your humour, yes, two steps was my way too but one step on all fours on a very bad day works good 😏👌

Hi, I don't think there's any point me telling you that alternative "medicine" is a waste of time.

However, here in the U.K, provided you have mental capacity to make decisions relating to your medical care, you cannot be forced to undergo any treatment or clinical intervention. You have the right to make your own decisions, even if they are not the best ones.

It's important patients maintain the right to make decisions relating to their own healthcare.

Toci profile image
Toci in reply to

That seems a very sweeping statement and completely wipes out the experiences of people who use alternative medicine. It may not have worked for you, or you may not have tried it, but that does not mean it should be dismissed. Try opening yourself to new thoughts.

in reply to Toci

Hi Toci, thanks for your feedback.

However, the fact is, and by fact I mean scientific fact; alternative "medicine" has no evidence of efficacy and great swathes of it have been shown not to work in scientific studies. While I'm sure personal experiences (anecdotes) are essential to you, anecdotes aren't on par with data.

People who "believe" in alternative "medicine" tend to be the closed minded ones because they are ignoring the great swathes of data that show alternative "medicine" to be worthless.

My concern is that people may use alternative "medicine" in place of actual medicine and put themselves at risking harm. I'm sorry if my comment upset you.

However, you're free to follow the path you choose. You don't have to listen to me.

Best Wishes,

Toci profile image
Toci in reply to

"People who "believe" in alternative "medicine" tend to be the closed minded ones because they are ignoring the great swathes of data that show alternative "medicine" to be worthless." - such a huge generalisation and again it shows such closed-mindedness. Broadening the knowledge base does not mean having to choose one over the other. They are not there to replace conventional medicine but to compliment it. Far too many drugs are handed out and alternatives need to be tested. Have you never had a massage to treat stress, had hypnotherapy to help with smoking cessation, tried acupuncture to relieve pain? Thankfully my GPs are not as cynical as you and all these 'alternative' medicines are now on offer at my surgery.

in reply to Toci

The point is, alternative "medicine" isn't a new. Most of it has been around for many years. Most of it HAS been tested and because it didn't work, discarded by the scientific and medical community- due to lack of efficacy.

Don't confuse cynicism with logical and critical thinking: just because your GP surgery offer alternative "medicine" does not mean it works. Sometimes it's offered because that what patients want. Again, this is not evidence of efficacy .

Toci profile image
Toci in reply to

But hypnotherapy, massage and acupuncture have been shown to work and be beneficial to patients which is why my GP surgery now incorporates them. With respect, you seem to be well behind the times but I will let this rest here.

in reply to Toci

Behind the times? Lol. Do you realise how old acupuncture is? There is no evidence any of those "treatments" you mention have ever changed the course of any specific disease entity.

Prove me wrong with peer reviewed data, I'll happily change my position.

(Of course, those "treatments" may have some effect via placebo. Humans are very suggestive).

You don't seem to know what you're talking about. You've been duped I'm afraid.

Toci profile image
Toci in reply to

....but I will let it rest here....

alicemoon profile image
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bmj.com/content/329/7476/12...

annals.org/mobile/article.a...

journals.plos.org/plosone/a...

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journals.plos.org/plosone/a...

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annals.org/mobile/article.a...

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jams-kpi.com/#/article/S200...

collthatsme63 profile image
collthatsme63

hi i will put my words to this went thorgh the same 4 five yrs to see what i had got and i wil say this u have fibro just like me do this ok put your left hand on the left leg just about 7ins above your nee cap from the middle to left of side of leg press in 4 one min and let go leave 30 seconds and just one finger on the middle to left press hard in wards if you feel a very sharp burst of pain at the start look out you will be come feeling sick most days to like you run 20 ,miles some days and u want to sleep about 2 pm most days eyes feel strange like wen your reading that means it will go places just like mine ps i hope you never get it at the bottom of your neck if you work finish it plus drivin to it will never leave that area all your life i find it so hard every day to cope now its there but if your are havin trouble with blood pressure do this go to a local like asda and get some beetroot juice and have about half pint a day for get all tablets no good doing more arm u will see the difference in you and plenty of sun lit e abroad black sand is the best thing since slice bread in lanzuraotee just go and berrey your body 4 a hour and u will feel on top of the world it will last three months wen home can not beat the caniry ilands coll

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