Do I keep going to the rheumatologist?

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AngieBG

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Hi everyone, newbie here. I was diagnosed by a rheumatologist on the 11th April, I had a follow up appointment with him a month later, and he wants to see me again in 2 months time.
So far my treatment plan consists of daily yoga Nidra, reduce my daily step count average from 9000, and a bath before bed. He’s also told me to check out a couple of websites, but that’s it… he’s told me he believes I will fully recover from this. These things are obviously not reducing my pain, and I sleep pretty well, and am a relaxed person.
Am I being gaslighted? What was everyone else’s first treatment recommendations from a rheumatologist? Do I give another rheumatologist a try?
 

Nan

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WelcomeAngieBG. He sounds to me that he’s not 100% sure of the condition but you will get lots of help from this forum. Good luck. Nan❤️
 

JayCS

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Hi Angie, and welcome "in"! :coffee:

Well, my rheums were much less help. Even those in my fibro clinic had hardly anything for me I hadn't tried before.

I agree Yoga Nidra / bath altho relaxed & sleep is OK already, plus full recovery sound as if he isn't taking his dx seriously.
However:
reducing your step count sounds good for finding your sweet spots, much better advice than usual from rheumatologists.
Believing in full recovery may be encouragement, to keep your hopes up & try to find things, placebo in the best sense of the word.
Checking a couple of websites isn't at all bad advice, depending upon which ones: If he recommended us, he's brilliant :sneaky::LOL::cool:, if he recommended fibromyalgiaresources he isn't, if he recommended healthrising he is good. (Remember: Name, but don't link...).
Docs shouldn't believe / pretend they can manage all of us in our diversity, I think it's good & realistic if they admit that like that.
And it doesn't seem fitting to bomb you with meds at the moment, I commend him for offering you alternatives & continuing.

What I'd be missing is testing and trialling supps like vitamin D, good B12 and good magnesiums, for starters.
 
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Con

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Hi everyone, newbie here. I was diagnosed by a rheumatologist on the 11th April, I had a follow up appointment with him a month later, and he wants to see me again in 2 months time.
So far my treatment plan consists of daily yoga Nidra, reduce my daily step count average from 9000, and a bath before bed. He’s also told me to check out a couple of websites, but that’s it… he’s told me he believes I will fully recover from this. These things are obviously not reducing my pain, and I sleep pretty well, and am a relaxed person.
Am I being gaslighted? What was everyone else’s first treatment recommendations from a rheumatologist? Do I give another rheumatologist a try?
Hi AngieBG. I have only been a member for a few months and very thankful for this group. I was diagnosed by a rheumatologist, however, he did not do care and referred me back to general Dr. I take supplements and prescriptions for pain. Everyone is different in Fibro journey.
 

sweetkamie20

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Fair question: how to know if your doctor is good. His response is sort of surprising since, as you said, you are calm by nature, etc. Also, I don't know if anyone has ever been "cured" of fibro-they just manage it very well. This leads me to consider that you felt like you were given false hope, a band-aid, a placebo. You want real answers. I will be a little blunt now: fibro is still very misunderstood in the medical community (until recently everyone that it was a mental health issue). If you want better guidance, you will probably be best off listening to the people here that are managing it...hate to say it but the medical community knows very little about fibro and even less about what you, individually, can do to manage it. I am new to this and what I am seeing is that the best expert in the field of my body is me 😅
 

fimi

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Hi AngieBG and welcome, what your rheumatologist should have said, is that if you keep up the self care and find what works for you - your triggers and how best to treat them - then you can live a very fulfilling life. This can take time and be a journey in itself - but can also be the most rewarding. However if you allow the self care to slip (which we all can do from time to time) you may unfortunately feel the consequences of this healthwise.
Hopefully your rheumie does understand all this as he suggested some self care which is a good start. Maybe on the day he just had a poor choice of words...here's hoping!
 

Auriel

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I had no treatment plan from the rheum just the annual fibro tests, It could be wishful thinking and hoping on his part but it doesn't sound like gaslighting (and I’ve experienced that and it’s not nice) I hope you’ve not been gaslighted by someone cos you know the name but I hope you find something that eases your symptoms it’s a trial and error thing I’ve tried (mostly food changes pain meds and not pushing with exercise (I should have put this at the beginning but) welcome to the forum
☕🧁😁
 
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sunkacola

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Hi everyone, newbie here. I was diagnosed by a rheumatologist on the 11th April, I had a follow up appointment with him a month later, and he wants to see me again in 2 months time.
So far my treatment plan consists of daily yoga Nidra, reduce my daily step count average from 9000, and a bath before bed. He’s also told me to check out a couple of websites, but that’s it… he’s told me he believes I will fully recover from this. These things are obviously not reducing my pain, and I sleep pretty well, and am a relaxed person.
Am I being gaslighted? What was everyone else’s first treatment recommendations from a rheumatologist? Do I give another rheumatologist a try?
I agree with what fimi says in her reply to you.
Self care and careful observation of your body and when, where, and why it does certain things is your best approach. Your treatment plan is something that only you can really determine, because it takes a bit of experimenting to find out what combination of things helps you the most and when to apply this or that response to pain in your body and other symptoms.

I wrote a post that has helped some people because it lists a lot of things you can try. Many people have reported that they have made their own living plan based in part on or inspired by that post, and I hope that it helps you.
 

DJ Payne

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Cure? I've never heard of a cure for Fibermyalgia. The most my Drs say is I can hope to 'manage' it.
Everyone suffers differently of course.
However I have found warm baths before bedtime and Melatonin help to relax me so that I can rest.
Stretching of my muscles helps.
Gentle massage has helped some also.
Chiropractic and Acupuncture didn't work for me at all.
In fact it seemed to aggravate my pain.
I have days when I have pain enough to bring tears my eyes but other days where I feel pretty well.
It's definitely a trail and error disease.
Don't expect a cure. Just learn to manage it, find what works best for you.
Good luck in your journey.
 

Charz

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He sounds really good to me. Natural remedies are really the only thing that work So great you can sleep!!! What are your symptoms I guess you are hoping a rheumatologist will help with?
 

saluna420

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Hey AngieBG. It’s certainly a personal choice but my rheumy only offered me pharmaceuticals( I won’t take them) so I found a general practitioner DR and am so happy I made the switch! GP is great! I was already taking control of my wellness and wanted to do it as naturally as possible. Dr recommends I get massages when I’m feeling good bc they do help’ For me I felt it important to speak ahead with the massage therapist about pain levels and places not to touch. During the massage I speak up as needed. And FOOD to me this can not be more important. Many many foods and additives cause inflammation and are just like poison in our bodies. So I strive to eat clean organic foods low on the FODMAP and listen. Listen to my intuition. I listen to my body. I make changes as needed throughout the day to feel better. I rest. And I remember to be grateful and appreciative. I consume cannabis to manage my symptoms.
Best wishes on your journey 💗 jill
 

jschneider444

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I saw a rheumatologist about a month ago after having not seen one for a number of years. Basically, it was a waste of my time since she would not prescribe me anything for my pain other than Celebrex which really hurt my stomach worse than Ibuprofen so I was only on it for a week (one week too long). She emphasized that I need to follow up with my pain management doctors and suggested I try acupuncture and that was IT!! Not seeing her again because there's nothing she can do to help with my fibro pain! I only had one rheumy years back who helped with injections but then he wanted to do some other waste of time treatments that I refused to do and he got so angry with me. Never went back.
 

JayCS

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suggested I try acupuncture and that was IT!! ... rheumy years back ... other waste of time treatments that I refused to do
Did you try acupuncture? It does have a certain evidence for it helping fibro... I'm on my 3rd stint now, with slight success.
How did you decide that the treatments would be a waste of time?
 

sunkacola

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@jschneider444 , you have run into what most of us have, which is that the medical establishment is very limited in what they can do to help us. Really, all they have to offer most of the time is medication which has it's own problems and limitations for most of us.

I agree with JayCS that acupuncture is a thing worth trying. It can't hurt you and it's worthwhile to explore all of the possibilities.

What it boils down to is we have to take charge of our own health and work out a treatment and management program that works for us as individuals. For suggestions on how to get started with that, please read my post on that topic and start with whatever you can so you can get on the road to helping yourself feel better. Nothing is a "cure", but you can take the word of many here including myself that some of the things I mention have been very helpful in managing the pain and other symptoms. I went from essentially being disabled to having a full life again through developing my own management system.

 

jschneider444

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The rheumy basically told me either stick w the senior pain Dr (who I'm seeing tomorrow) or try acupuncture which would probably cost if $$$ so I'm just sticking with the pain Dr for now. Also trying to do recumbent bike and/or walking. Dealing w my stress level too!! Can't let the news affect me so avoiding it as much as possible. Taking each day as it comes!
 
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