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TwinTurboViper
05-10-2021, 11:43 AM
Trying to find support group or people that could help share the treatments and or symptoms of going thru this dreaded disease.

I have been diagnosed with this last year and only getting worse and trying to reach out to others that are experiencing this so that I can have better understanding of how to treat different conditions, best doctors to see and someone to talk to.

Thank you and apologize if I might have gotten the wrong place to post this and again appreciate any and all information as you all have helped so much in the past.

Sage327
05-10-2021, 12:47 PM
Trying to find support group or people that could help share the treatments and or symptoms of going thru this dreaded disease.

I have been diagnosed with this last year and only getting worse and trying to reach out to others that are experiencing this so that I can have better understanding of how to treat different conditions, best doctors to see and someone to talk to.

Thank you and apologize if I might have gotten the wrong place to post this and again appreciate any and all information as you all have helped so much in the past.

If you need a Dr, I highly recommend Dr Catherine Sullivan, a Rheumatologist located here in TV.

GrumpyOldMan
05-10-2021, 12:54 PM
Obviously, you need to speak with experts in the field.

In addition, I would recommend researching THC and CBD treatments and discussing the potential with your primary doctors.

TJ SoBos
05-10-2021, 01:16 PM
I was diagnosed with RA (severe) about 8 years ago, and the Rheumatologist tried the gamut of treatments....including self injections. After about a year of different meds we found one that works.....Humira....which I inject every other week. It has controlled my symptoms quite well, and I remain pain free, and without joints getting all misshapen.
Luckily my insurance covered this extremely expensive drug.
Feel free to ask any questions. I hope you find something that works.

Michread
05-10-2021, 04:12 PM
Members of The Villages health and wellness club may be able to give you some suggestions or support.

PugMom
05-11-2021, 10:54 AM
you poor thing, hope you can find some relief soon :pray:

tophcfa
05-11-2021, 09:39 PM
Wishing you nothing but the best. My late mom had it for the last 35 years of her life and learned to manage it enough to live a very good life. At first there was nothing but some trial medications available, but over time some very effective medications were developed that helped her immensely. One of my best friends, who is a scratch golfer, got diagnosed about 6 months ago as well. He couldn’t hold a golf club or ride a bike his wrists and hands hurt so bad. After being on the proper meds for a couple of months he is back to his normal daily activities, albeit with some pain and discomfort. Hang in there and establish a relationship with a good medical specialist. Positive thoughts will be coming in your direction.

TwinTurboViper
05-12-2021, 01:36 PM
If you need a Dr, I highly recommend Dr Catherine Sullivan, a Rheumatologist located here in TV.
After my 2nd Dr I am now trying Dr and undergoing blood test now and scheduled for 3 weeks out as I was prescribed Prednisone for pain and so far it has worked miracles. I know these steriods are a temp fix and hope to find the correct meds to keep this under control. She seems to be a very "caring" Dr unlike others and appreciate your advice as others too had recommended her.
As my late brother often told me.... " Getting old ain't for sissies ". Thank you again for the recommendation

TwinTurboViper
05-12-2021, 01:37 PM
If you need a Dr, I highly recommend Dr Catherine Sullivan, a Rheumatologist located here in TV.
After my 2nd Dr I am now trying Dr and undergoing blood test now and scheduled for 3 weeks out as I was prescribed Prednisone for pain and so far it has worked miracles. I know these steriods are a temp fix and hope to find the correct meds to keep this under control. She seems to be a very "caring" Dr unlike others and appreciate your advice as others too had recommended her.
As my late brother often told me.... " Getting old ain't for sissies ". Thank you again for the recommendation

TwinTurboViper
05-12-2021, 01:39 PM
Wishing you nothing but the best. My late mom had it for the last 35 years of her life and learned to manage it enough to live a very good life. At first there was nothing but some trial medications available, but over time some very effective medications were developed that helped her immensely. One of my best friends, who is a scratch golfer, got diagnosed about 6 months ago as well. He couldn’t hold a golf club or ride a bike his wrists and hands hurt so bad. After being on the proper meds for a couple of months he is back to his normal daily activities, albeit with some pain and discomfort. Hang in there and establish a relationship with a good medical specialist. Positive thoughts will be coming in your direction.
Would love to know who your friend's Rheumatoid Doctors name is. So glad he has recovered

tophcfa
05-12-2021, 02:22 PM
Would love to know who your friend's Rheumatoid Doctors name is. So glad he has recovered

Sorry, his doctors name wouldn't be of much help as my friend is up north. I will find out what medication has been working for him and send you a PM.

DAVES
05-13-2021, 01:49 PM
After my 2nd Dr I am now trying Dr and undergoing blood test now and scheduled for 3 weeks out as I was prescribed Prednisone for pain and so far it has worked miracles. I know these steriods are a temp fix and hope to find the correct meds to keep this under control. She seems to be a very "caring" Dr unlike others and appreciate your advice as others too had recommended her.
As my late brother often told me.... " Getting old ain't for sissies ". Thank you again for the recommendation

Re: caring doctor
Doctors often seem cold. Imagine what it is like all your customers are sick.

In terms of support groups. My view, my personality, does it help you to associate with people where the topic is IF, YOU THINK YOU HAVE IT BAD I AM FAR WORSE THAN YOU.

Why me is a normal question. The answer is, it is me and if, you say i can't do it, it is a dare and I will do it.

Jdulle
05-13-2021, 02:39 PM
Yes, I would definitely recommend Dr. Catherine Sullivan!

TwinTurboViper
05-29-2021, 06:56 PM
I have researched and have taken your advice and now have my 3rd appt with Dr Sullivan who is trying to get me diagnosed correctly with blood test etc and try not to read too much into the nightmares it can be. I have tried to correct my diet, watch my sugar and caffeinated drinks and hopefully get the pain under control as it can be rough at times.

Would love to find others who share my problems to discuss their remedies and helpfulness instead of all the worst case sensations I read on the internet. Also with all the years of experience that Dr Sullivan has I am hoping to get this under control.

Thanks again to all the ones that have given suggestions as it’s greatly appreciated. God bless and stay well

KathieI
05-30-2021, 09:04 AM
Trying to find support group or people that could help share the treatments and or symptoms of going thru this dreaded disease.

I have been diagnosed with this last year and only getting worse and trying to reach out to others that are experiencing this so that I can have better understanding of how to treat different conditions, best doctors to see and someone to talk to.

Thank you and apologize if I might have gotten the wrong place to post this and again appreciate any and all information as you all have helped so much in the past.

Sorry to hear about your diagnosis. I was diagnosed about 3 years ago with RA and Fibromyalgia and the pain was getting worse and worse. My wonderful doctor (internal med) has tried every remedy including therapy. The side effects of some of the drugs were totally intolerable. The good news! Since quality of life is so important at my age, we have developed a daily dose of 5mg Prednisone which keeps me going all day. I consider it my miracle drug. Side effects are minimal since its such a lose dose.
Good luck!!

NotGolfer
06-03-2021, 09:10 AM
I was diagnosed with this in 2011. It's important to find a dr. you trust and it appears you have with Dr. Sullivan. I've been her patient for about 2 yrs now. Everyone's case is different as are the responses to medications. You'll need to be your own self advocate and educate yourself as much as possible. There are support sites on Facebook that are very good. In the beginning I'd freak out over information I read on Dr.Internet so had to quit that. Every medication has "potential" side effects so put that all aside if you can. There is a support group that meets in T.V. but only during the Fall/Winter/Spring season and not during the summer. I think it's run by snow-birds. I've gone a couple of times but for me personally, it wasn't all that helpful. It met in one of the rec centers near Spanish Springs.

SusanStCatherine
06-03-2021, 11:38 AM
Everyone is different. One remedy make work for some and not others. See a good rheumatoid doctor. If that doesn't work, see another doctor like a functional medicine doctor. Do your own research on the internet. Anti-inflammatory medicine may help. Physical therapy and/or exercise may help. Diet may help. I stumbled upon a recommendation for collagen peptide supplements (joint type II and maybe X) which have helped me immensely. Good luck!

TwinTurboViper
06-04-2021, 10:32 AM
Thank you as I too have been put on the Prednisone 10mg daily and I too find it a miracle that has FINALLY stopped the pain. Thank you for your response as she has also put me on another medication but said it would be at least 2 months until it started working and then hopefully will discontinue Prednisone/