What has been the most frustrating about being diagnosed with arthritis?

[MaddieHU]

Share your experiences and interact in the comments below!

[Cyndie41]

The most frustrating thing about having arthritis is, never being able to make future plans because I never know how I will feel that day until I wake up in the morning.

[Tinkerbell5]

Yes u never know what the next day is going to be like and some people’s ignorance to how it effects u etc x

[popsmith1874]

Yes I've lost count off how many times I had to change my plans and not being able to do the things I used to be able to do but we still try lol

[hawker955]

The only frustration that I experienced was the delay due to the rheumatologist telling me that I had post-viral arthritis 3-4months after he virus. I told him that I had not had a cold or flu but he said oh yes, you have! I pointed out that as a trained and serious athlete I had training diaries in which I record any relevant events affecting my training so knew for a categorical fact that I had not had flu etc., at all. Despite that it required a further few months for him/them to change the diagnosis to RA. One rheumatologists aid that it must be RA because they've prescribed Humira!

I asked, at what point did the choice of treatment determine a diagnosis? Never is my answer! Obviously!! Diagnosis is based on symptoms and blood tests. Treatment follows diagnostic leads but does not dictate a diagnosis for heaven's sake!! That kind of stupidity in a medical professional is frustrating and worrying!

PS I am a vet so know all about how to make a diagnosis!

[GoatGirl56]

The most frustrating is my rheumatologist hearing me say my pain has decreased and immediately asking me if I wanted to add another med.... I want to manage this without a rheumy

[Deniseelk]

Not being able to do the same things in the same way and as quickly as I used to ( due to joint damage / weakness / pain and fatigue). It has slowed me down and I am nowhere near as productive. It throws my plans out, unexpectedly.

[Alexplode]

I find it really frustrating the time it takes to actually see a rheumatologist, then to fail on various meds which takes months. By now more painful joints are affected, waiting another 6 weeks for MRI, then another 6 weeks to be approved for biologics. The waiting plus the increased pain is never ending.

[dryan]

I was diagnosed with RA at age 16, many yrs. ago. It was a different era for sure. I was told negative info., which has not totally been proven right. The field has evolved greatly since 1964. Thanks to great Rheumatologists, I have had good care but still struggle with complications from RD.

[Patient0]

I never really feel like myself anymore. It has changed my life in so many subtle ways. Not being able to cope with cleaning, cooking and looking after my kids is the most frustrating thing. It is the fatigue and the depression. Not being understood. Not knowing whether I'm ill enough to take a break from work or whether this is just the new normal that I have to adjust myself to. Other random symptoms which may or may not be due to medicines. Feeling totally out of control.

[nakkita in reply to Patient0]

For me it is how the Rheumatologist lies! Mainly because he works under the government and they don’t want to see anybody get better because it’s all about making money! I’m just very happy that I’ve been able to 100% eliminate all of my symptoms just by doing the opposite of what the doctors said! That is going 100% plant based and not eating anything with artificial additives! I have no more symptoms and I’m glad I took my health into my own hands and made food my only medicine!

[Patient0 in reply to nakkita]

Could it be a case of misdiagnosed food intolerances? Coeliac is a prime example.

[nakkita in reply to Patient0]

I don’t think so I had all the hallmark symptoms of RA!

[amberly87]

I have to say for me it’s a tie- the TWO most frustrating things are: 1) The unknown. Not knowing how you are going to feel day-to-day. You’re scared to make plans and when you do, they get changed a majority of the time. Then you feel like you let people down, which brings me to... 2) The mental impact it has on you. I feel like I can’t be the mom/girlfriend/friend/etc. I want to be most of the time. I am already moody; feeling bad almost everyday/ waking up feeling bad has the ability to weigh down your mind in a way most people can’t understand. Then, I add to the sadness/moodiness when I become upset about not being able to participate in things, change plans, or be who I want to be in my relationships. This anxiety tends to exacerbate my tension and pain, and I get caught on this “hampster wheel” of one thing aggravating another. It can be a lot to handle, and a lot to try and get a handle on. Plus, I hate waking up feeling bad in the mornings. It feels like you start every day off trying to beat the odds and starting everyday off with the world against you.

[nakkita in reply to amberly87]

For me it is how the Rheumatologist lies! Mainly because he works under the government and they don’t want to see anybody get better because it’s all about making money! I’m just very happy that I’ve been able to 100% eliminate all of my symptoms just by doing the opposite of what the doctors said! That is going 100% plant based and not eating anything with artificial additives! I have no more symptoms and I’m glad I took my health into my own hands and made food my only medicine!

[Caza]

I agree with most of the replies. It’s about not being in total control. Not being able to do the things that I used to do. The overwhelming tiredness.

[nakkita]

For me it is how the Rheumatologist lies! Mainly because he works under the government and they don’t want to see anybody get better because it’s all about making money! I’m just very happy that I’ve been able to 100% eliminate all of my symptoms just by doing the opposite of what the doctors said! That is going 100% plant based and not eating anything with artificial additives! I have no more symptoms and I’m glad I took my health into my own hands and made food my only medicine!