Feeling very lonely and afraid

ElTito

Hi Folks:

Today has not been a good day. My arms are achy, legs sore, mind depressed. It's crazy, but no one has diagnosed me with RA, but I have all the symptoms (but I also have Lyme disease and take statins - I should stop googling). My wife thinks I am crazy for self-diagnosing and googling everything to death. Meanwhile, my doctors are not getting back to me. I would like to see the rheumy before April 7. I have asked my GP to please call the office and move up my date. She said today that she would email them. My GP told me that my RF was high at 12.6, but no imflamation. She's the one who suggested a rheumy, but I digress.

The main thing is that I feel very much alone, like I am in a deep dark hole without any hope. This is pretty selfish because from what I read here there are people a lot worse off than I am; folks who have been living with RA for years, decades. To my mind, in its current state, that offers a glimmer of hope and for that I am so grateful for this site.

I am frightened by what might happen to me (selfish again?). There are horror stories that I am playing in my head. I would like to stop that because it's not going to change anything, and stress can only make things worse.

I would like to get past this moment in time and work on the things I can do for my benefit and for the benefit of my little family. Right now, it's Aleve for major pain and Trazodone to help me sleep. I would like to find some physical exercises I can do to help me.

I would love to hear from you, especially the veterans who have gone through this.

Thanks,

Tito

frogmorton

Good Morning Tito @ElTito

I am so sorry you are waiting for a final diagnosis. I do believe that (and correct me if l am wrong) Lyme disease arthritis is treated at least initially with antibiotics? For you though that was 10 years ago from your other post?

I see you are on Aleve (our naproxen and) a tricyclic perhaps a little like our amitriptyline at night. You have a high R factor too so seeing a Rheumatologist has to be a good idea.Your GP sounds good to have referred you and by doing his/her best to get your appointment expedited. Fingers crossed that can happen and you get investigated soon.

It sounds to me as though you fear having RA very very much and can't think of much else while you are in pain and waiting for a diagnosis.

Would it help if I told you a tiny bit about me? Maybe maybe not, but I will anyway.

When this started off for me I was also terrified I saw myself as having no future; I would be the person with damaged hands and maybe a wheelchair user. I felt unable to plan anything 'in case' I had a flare and felt too ill and let people down. I did not want my children embarrassed about me and so sorry for my husband who loves travel.

Then I came here and cried for a fortnight with all the lovely people here and the support they gave me. I needed to get informed (reliably; so here and rheumatology in time for you) and talk to people who understood. I had to almost grieve for the life I had had planned and look to a new future. I was given medication - trial and error there which eventually helped and here I am 12 years later still on my feet (albeit with support sometimes) and have great life, different maybe, but great. We have a motorhome and travel all over the place, my eldest just got married, I saw the youngest through leukaemia and would like to see Australia when all this COVID malarkey allows.

You WILL get past this moment in time and trust me life will be way better than you fear. ((()))

ElTito

Hi Frogmorton:

I want you to know that your words have made such an enormous difference in my mood. You uplifted my spirits at a very dark time in my life!

Thank you for taking the time to write about your story, which is so inspiring to me and totally got me out of my depressive state. I admire you for what you have achieved and that you plan to travel soon once this COVID insanity is over.

I did have third stage Lyme about 10 years ago and was treated via IV antibiotics. This time I went to the doctor in the first place because I have all the same symptoms as last time. My theory is that I have been reinfected, probably last year. I live virtually in the woods, and I do a lot of outdoor stuff. But only a professional can tell me for sure what I have.

Today, after various calls and emails, I had my appointment with the rheumy moved up to Feb. 28 from April 7. That set my mind somewhat at ease, but my dark side tells me that I won't be able to walk by then. LOL! I am doing way too much googling. I definitely want to stay away from that.

This so is much about attitude and the way one thinks, isn't it? Stress is so much a part of this too.

This is a long-winded way of saying thank you, thank you, thank you.

Cheers,

El Tito

Arthuritis

@ElTito Hi I am so sorry that your GP has failed to be more proactive.

Here is something you can use that is better than Dr Google, there is a free app called Ada by Ada Health, at least on iphones, I am sure its there on android, but its an A.I. diagnostic app designed in collaboration with medics (including NHS). It diagnosed me with RA back in july 2021 when my GP could not figure it out and wanted to test me for allergies or helicobacter or endocrine problems. When I was finally diagnosed in October privately (long story) my RF was 158, so pretty high! NHS diagnosis finally in Dec 2021.

The important thing is getting a correct Diagnosis by the right specialist and treatment.

Dr Google will just scare you silly, as unlike a real doc or Ada, it does not have probability weights and will give you an equal chance of a rare disease as a common one. You need a pretty good background in stats and biosciences to get something useful from Dr Google (for now).

Ada is still not a substitute for a good doc, but FAR better than self-diagnosis with gogle!

Being a machine, it has infinite time & patience, not judgemental☺️, and will not miss anything, rush you or have a bad day!

Keep us posted!

ElTito

Hi Arthur:

I want to thank you for the prompt and calming response.

My doctor told me to stop googling, my wife told me to stop googling and now you tell me the same. Don't they say, "three's the charm"? Maybe I should stop googling, huh?

Thankfully, my docs have been responsive via e-mail. My infectious diseases doc e-mailed me yesterday that my bloodwork is not consistent with RA, but he agreed a visit to the rheumy is a good idea - that everyone agrees on. My GP intervened and got me an early appt. with rheumy person (Feb. 28 instead of April 7 as originally scheduled). Between then and now, I will work on help with sleep, exercise, Aleve for aches and discomfort, less catastrophic thinking to bring down stress.

Staying away from google for this, because there are too many horror stories, which will not help me.

My wife always says, "everything is going to be alright" and she is right 99.9% of the time (guess which part of that I worry about?lol)

Anyway, a rather lengthy reply, but I do want to thank you very much for your response. It did a lot for me.

Cheers,

Tito

frogmorton

Hi @ElTito

Sorry for taking so very long to get back to you. Thank you for taking the time to reply to my post. I am so glad that my post helped a bit and I know @Arthuritis has helped too. This is a difficult 'limbo' time for you and understandable that you worry and stress about what might be going on for you.

I am so glad you have been able to get your appointment moved to this very month. That is really good news. You will then be on the path to finding out what is going on.

Do let us know how things go for you us lot understand and will never judge ((()))