From injections to meds

Lindylou

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After years of increasing and widespread pain, upper body as well as lower extremities , was finally diagnosed: 1st, Fibromyalgia, lately, polymyalgia reumatica. For two years, i've been getting steroid injections in my hips (bursa) which would pretty much eliminate the shooting pain from hips running down both legs. Only problem, the relief lasted for one month, and they won't give you another injection for 3 months. So, for the remaining 2 months, I was back to using handicap carts in stores, barely making it up stairs unassisted, not taking walks or sleeping, etc. Having never taken any prescription drugs in my life up to this point, a month ago, my doc started me on 40mg of prednisone taken in the morning with food and combined it with 75mg of Lyrica at bedtime. Wow! For the 1st 3 weeks, I was sure I'd died and gone to heaven. I could do everything, 80 to 90% pain free. Actually sleeping all night, walking my dog, yardwork, all of it! I am having some minor side effects, slight dizzyness, a bit of blurred vision at times, and feeling more "caffinated" shortly after taking my prednisone in the morning after my 1 cup of coffee. Tradeoff, right?
His instructions were (are) to decrease the prednisone every 10 days. I am now at 20mgs of prednisone. The pain is returning, am now limping around again, and yesterday used a cart in Costco.
I'm aware steroids are not good for us. Have any of you taken prednisone for long term and suffered for it? Or, been fine with it? Or used this combo? I read one time that this combo worked for someone on here. I will speak to my doc next week before I run out of the meds and see what he will suggest. I am 75 years old, and have decided that quality of life (pain free mobility) is more important than a few side effects that hopefully won't ruin my otherwise good health.
Is 40 mg all that much? Is it the nature of these types of drugs to wear off after a period of time?
Any suggestions would be welcome.
 

sunkacola

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It is essentially not possible to take any steroids for an extended period of time without their being very bad for the body. If taken for a long time the body becomes physically addicted to the steroid and will need more and more in order to function. And then, going through withdrawal from the steroids will be a very bad experience.

I personally strongly recommend that you work on other ways to manage the pain and do not use steroids at all. they will not help your health, only mask pain, and as you have noticed they don't even do that for long enough. I advice against going down the road of taking steroids regularly. Most people who do regret it. Yes, it is definitely the nature of these drugs that you will need more and more and more over time.

Unfortunately when it comes to steroids it's not a case of a few small side effects. Steroids will ruin your overall health, pretty much guaranteed. At 75 you still have a lot of years left and you can have a quality of life in a more healthful manner than taking those drugs.

If someone tells you they have taken steroids for a long time and are fine, I would say first: what works for another won't necessarily work for you, and second, what does that person call "fine"? Because you cannot be truly healthy if your body is dependent of steroids.
 

sunkacola

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PS forgive me for not saying: HI, and welcome to the forum!
 

Lindylou

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Hi Sunkacola,
Thanks for responding.
I have always resisted prescription drugs my entire life, only took ibuprofen. First time I caved in after becoming so pain ridden and desperate.
In two weeks (after rafts of guests, cooking, summertime treats), my husband and myself will be starting a new way of eating. We are beginning with a low sugar, low carb, high protein diet. You eat small meals/snacks 5 times a day. Basically resetting and speeding up our metabolism. A friend has had marvelous results so we are enthusiastic about it. Hopeful this will help with inflamation and some of the pain. (Oddly enough though, when tested, my inflammation markers were normal.?!?)
My daily habit: 1 cup of reg. coffee with 1/2 and 1/2, 1 glass of agave wine . I switched to black tea for a couple of months, didn't notice any change at all. Herbal teas fall flat on their face as far as satisfying IMO. We rarely eat anything with preservatives, or try not to. I read all labels, but of course out to dinner/lunch one day a week you never know for sure what you are getting. Admittedly, even though we eat good quality food with lots of seafood, vegetables and fruits, we are starch lovers.........breads, potatoes, pasta, rice, all the bad white stuff. That will be changing. Sugar, sugar, sugar.
Perhaps with diet, reduction in the drugs and eventually off of them I hope. we'll see a positive result.
Believe me when I tell you, I was like someone 100 yrs old before these drugs, so you know how desperate one can become to feel normal again. It will be hard to leave them off!
(I also take D3, B12, and Vit C )
You didn't mention anything about Lyrica.............what is your opinion on it. Is it as bad as a steroid? My doc said that it works on the neuro pathway between your pain center and your brain, to reduce the pain sensation. If I understood it right.
So, there you go. Not sure anything i'm saying here will help anyone else, but you never know.
 

JayCS

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Hi Lindylou, and welcome from me too!
(Oddly enough though, when tested, my inflammation markers were normal.?!?)
These show conventional rheumatic types of inflammation, here we're talking either neuroinflammation or some other kind of 'invisible' inflammation which hasn't really been uncovered yet.
We are beginning with a low sugar, low carb, high protein diet.
Sounds good. The most important thing with low carb is keeping away from the unprocessed 'bad white stuff', the simple carbs, whilst you should be able to replace it with wholemeal stuff. High protein isn't necessary, but reducing carb will increase your protein anyway.
You eat small meals/snacks 5 times a day.
I'm not sure if that's necessary. The Mediterranean diet which is often recommended for fibro in studies as being generally healthy only has 3 a day. I need to keep to this for my lipids, which are 'gobbled up' in the longer breaks, preferably 5 hours between meals.
Lyrica.............what is your opinion on it. Is it as bad as a steroid?
pregabalin/Lyrica does work for some, and like @MaiTai has said may work better than gabapentin/Neurontin. But Lyrica was FDA-approved for fibro in 2007 and has much more medical evidence for it. Some people however do tolerate the side effects of gabapentin better. Both better than steroids, but the more we can get away from meds the better. In your situation you've been using it as a life belt, which is understandable, and in the meantime we can try to install other ways. For our bodies I think it is better to reduce and preferably stop meds whilst learning to pace better, if that is at all possible.
to reduce the pain sensation
It's not really known how pregabalin/Lyrica really works actually. This is one idea, but not proven. It's based on the fact that it does work for some people and that there is a hypothesis that our pain is a brain/spine nerve problem, and if it works then it must be that. If it were that however I'd argue that it should help most people, which it doesn't. My experience with meds that work for others was that they didn't help the pain but caused a lot of harm, so I was forced to look for alternatives.
 

Lindylou

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JayCS,
Wow. Thanks for lots of good info, and encouragement. I love the Mediterranean way of eating, but it's been the Southern Italian in me that could eat pasta and Shrimp 3x/week and the Irish potatoes genes that say "fix mashers! Obviously will need changing, dang it.
I've been pretty trim& extremely active my whole life, which is why it's been so difficult to become sedentary with all the pain. Plus overweight now. I was surprised to see how many "younger" women have this, maybe I thought this mostly crept up on us oldsters.
I will continue to follow this topic, and a hearty thank you to the faithful on here trying to help the rest of us.
 

JayCS

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pasta and Shrimp 3x/week and the Irish potatoes genes that say "fix mashers!
Well, praps you'll relish ;-) the news mediterraneandietguru has for you that this diet will let you lose weight, yet pasta you can eat whole wheat-based or better: veggie-based, legume-based or gluten-free.
And potatoes small quantities, preferably only a few times a week, avoid French fries, whilst roasted, mashed, if oil then olive and baby potatoes will help minimize the load.
Whilst shrimps belong to it like much seafood, preferably fatty, cos that's the good fat, lots of omega 3.
Other doubts: Just search the web for that food plus "mediterranean diet" :cool: (better without sunglasses...)
Instead of staying sedentary you could get trimmer again & active again despite the pain by taking up an activity regime of very regular exercises & stretches, specifically for each local pain, starting low & slow.
 
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sunkacola

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@Lindylou , The diet you are trying sounds good. But........If you want to find out what really works for you specifically it is more useful to do an elimination diet, or to cut out one thing like sugar or gluten altogether and see if that helps. Also remember that to give anything a decent try you need to do it 100% diligently for at least a month. Since you eat a lot of gluten I would suggest trying that first. Cut out all of it completely, which means reading food labels obsessively because gluten ( wheat, rye or barley) is in almost every packaged food and condiment. It is really easy now to find gluten free pasta and bread.

Inflammation diets are not likely to be helpful if your markers show no inflammation, and Fibro is not an inflammatory syndrome in itself. So I wouldn't put much store in that specifically.

Exercise is important too.

Here is my post with all my best advice for managing fibro. Let me know if you have questions.

 

JayCS

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Inflammation diets are not likely to be helpful if your markers show no inflammation, and Fibro is not an inflammatory syndrome in itself. So I wouldn't put much store in that specifically.
I sort of agree with that, but the reason why I started talking about the Mediterranean diet but forgot to say :rolleyes: was that it is a) recommended for fibro and b) also one of the main types of anti-inflammatory diet, plus c) you lose weight cos of its good fats, d) good for CVD and d) easy to go gluten free too.
 

JayCS

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anti-inflammatory diet
"... they really help reduce inflammation, and that's really what we're looking at in the body is really inflammation, so when we have increased pain we also have increased inflammation."
youtu.be / bPK__YjLRYMa "Healthy Eating and living with persistent pain"
Dr. Katherine Brain (New South Wales) talking to Pete Moore (UK) on his channel "Pain Toolkit".
BTW that's a pain resource highly recommended by people in the know. I've just started on it a bit, but just skimming thru the 3 most recent videos (in "double speed" 🤠) I'm sure it's got a wealth of stuff. 🛠️ 🧰
 
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sunkacola

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In spite of that good research, not all pain = inflammation, so that is a bit of an overstatement.
A headache doesn't always = inflammation in the brain, although migraines (which are not always of the painful kind), are often accompanied by inflammation. There are kinds of arthritis pain that are not accompanied by inflammation. Etc.

However, it is a fact that a good deal of pain, no doubt most pain, is accompanied by inflammation or caused by it, and an anti-inflammatory diet is rarely going to do any harm unless of course one is allergic to something in it. But eating that neither reduces all kinds of inflammation nor relieves all kinds of pain. It's a very good way to eat, though, for most people. And has definitely helped a lot of people be healthier, especially if it is a change from a really bad diet such as the SAD (standard American diet) or equivalent.
 

Harpy

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I got to the end of my rope in September and seen a good rheumatologist. He put me on a high dose of prednisone with taper to no more. The relief I got in that week was a miracle.
But even after those steroid injections I get in my spine were the same , the pain relief didn’t last long enough,.
The down side of the steroids is It causes osteoporosis, ( I definitely don’t want fragile thinning bones that snap if I trip) .
 

Cutiegirl

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Hi Lindylou. I ended up cutting out gluten, dairy, sugar and nightshade plants and it made a world of difference for me. I did about 30 days of this diet before I started reintroducing things to see what I could handle (e.g., yes to hard cheese, no to milk). It's a really long process because you can only change ONE thing at a time in order to see if it's a trigger. However, the results have been excellent. I know what I can handle now. It can be hard though. Today my colleagues had pizza for lunch. It smelled soooo good. I didn't weaken though because I knew how much pain and gastro discomfort I would be in tomorrow. It's just not worth it.
 

sunkacola

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I got to the end of my rope in September and seen a good rheumatologist. He put me on a high dose of prednisone with taper to no more. The relief I got in that week was a miracle.
But even after those steroid injections I get in my spine were the same , the pain relief didn’t last long enough,.
The down side of the steroids is It causes osteoporosis, ( I definitely don’t want fragile thinning bones that snap if I trip) .
Steroids are also physically addictive and very bad for your body. They should only be used in an acute situation, never for more than a few days.
 

JamieMarc

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All I can say is that I am 56 years old and have osteoporosis, so I refuse to take steroid injections or steroid medication of any kind whatsoever. As somebody else said, I think that if steroids must be used or one chooses to take them it is highly recommended to only do so for a very short period of time.
 
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