Other people seem reluctant to believe I am really experiencing so much RA pain and fatigue.

[Radiogirl]

I am wondering if anyone has any friends,co-workers, or family who seem to think that the fatigue and pain people with RA experience is not really so bad? I was only diagnosed 3 weeks ago and I don't know if I am experiencing a flare or reacting to the Sulphazine I started taking recently. I have zero energy and my pain is through the roof if I do the smallest of household tasks. They are frustrated with me, it's easy to see. I wish I could find a pamphlet or something to show I am not making this up or just being a baby. Thanks in advance for any insight.

[Nettac]

Yes. I. Short, it's difficult for folks to understand if they haven't actually experienced such pain. I've given up talking about it, because the response is usually something along the lines of...oh yes I've got arthritis pain in my finger.

Folks just don't know the difference between a systemic illness and simple aches and pains. To be fair, I don't think I did until I got smacked with it!

[Radiogirl in reply to Nettac]

Thanks for your reply. I am not sure if my mother had RA, but also looking back (when younger) I didn't have the patience or compassion I wish I would have had.

RA needs a national/global awareness campaign.

[Ceddy123 in reply to Radiogirl]

I agree

[Damaged in reply to Radiogirl]

You know that is so true. I was a therapist for eight years and a Fiancial Planner for twenty and I had no clue until I was diagnosed. It also took at least ten years to get diagnosed. Doctors need to be informed. I refer to GP or whatever you call family doctor. I have come to believe google symptom checker is more accurate than GP. But in my case I would not have known what to google lol. I know I am opinionated today but I strongly recommend everyone keep copies of all tests results, medications and specialists. It makes life much easier as you forget what you have already tried. I also no longer trust that anyone coordinates care anymore.It is easy to get lost in the system. Our doctors are often overworked and cannot possibly remember all details for all patients. Most Rheumies have a case load of 200 or mor patients. Even the very good ones are only human. Now I make sure I am on top of things. It is your body after all.

[Beviejon1 in reply to Nettac]

Absolutely! I try not to talk bout it either.Unless you've experienced the pain and fatigue I don't really think you can understand.I've always said at times the fatigue is worse than the pain.

[keeta]

Yes love .i have said in the past that i also wish it was written somewhere .exactly how it feels and how unlike arthritis ( as painfull as that is .) How it effects your whole body .how it feels like walking on stones. How you drop everything because its too painfull to hold or your wrists just give up. How every movement when you wake up is agony. But we get on with it becayse its part of our life so we have to.so to others .its not so bad.your loved ones see you outwardly and unless you take to your bed or cry in pain .they wouldn.t notice .i take my hat off to the spousers who have bothered to look it up .and can look in your eyes and see your pain . Sorry love but its one of those conditions were people either don.t know much about.or say oh yes my mums got that .its wear and tear .be gentle with yourself. Because people will treat you as you treat yourself .gentle hugs .kathy x

[Radiogirl in reply to keeta]

Thank you, Kathy.😊

[keeta in reply to Radiogirl]

No my mother didn.t have it .infact no one in my family has.and you are right .there is not enough written about it in laymans lanquage

[oldtimer]

That's what the NRAS awareness week is all about - have a look on the website.

It's because we look well (especially when I've just had a steroid shot!) and we are, mainly, stoical and uncomplaining.

When someone asks how you are, instead of replying "I'm fine", say something like "Still breathing" or "As well as can be expected". People don't actually want to know the details, but don't tell them you are fine when you are not. That doesn't include the health professionals - to them you should actually tell them how you are feeling "Having a lot of pain in ..." etc.

[keeta in reply to oldtimer]

Ha ha sounds like me.

(I.m fine )

[Radiogirl in reply to oldtimer]

Thank you, Oldtimer. I will look more at the website. I also will look forward to learning more and getting to know the group better as we all travel this journey.

[Radiogirl in reply to oldtimer]

Thank you!

[Gnarli]

No, you are not being a baby. Yes, unless they have it or already know someone with it our friends, colleagues don't understand. Aren't they blooming lucky! I can only suggest you direct them to the NRAS website who also do some brilliant leaflets. If you decide to join, the NRAS have a wealth of informative, helpful and accessible literature in their welcome packs. Just a thought. Big hugs

Jan

[Radiogirl in reply to Gnarli]

Thanks, Gnarly. I will be exploring the NRAS. I'm so glad I found this group. Can anyone join? I'm here in the US? Blessings and big hugs to you.

[lovekittys]

I have always said I wish people could feel our pain for 1 minute so they understood what we go through on a daily basis. A good story to read is "The spoon theory" by Christine Miserandino. She has lupas but it explains how to explain RA also. I am lucky because my husband goes to every doctor appt. with me so he understands about RA and what can happen. Your family, and friends etc. need to google RA and read what it really is. The first time I googled it, it scared me to death. I had no idea. Good luck to you and hang in there.

[MaggieLa]

My daughter had the same reaction when she was first diagnosed earlier this year.

[SJF1]

Hi I read a quote a while back that summed up how us with RA manage our day to day lives. It was ‘People with severe pain don’t learn to live with it they learn not to say anything about it!’ I have to say with me this is true of work & some of my friends.

[Jackadoodle in reply to SJF1]

Nobody knows the pain that we go through with RA unless you have experienced it yourself, once you have the treatment that is prescribed for you I am sure that your pain will be controlled and that you will feel a lot better, I know that some medicines take some time to kick in, so I guess it is just to have patience which is very hard when in pain.

Wishing you all the best.

[angelacorcoran]

If you go on to the nras website they do lots of information leaflets etc that you can order as a hard copy free of charge and they'll send them out to you I ordered everything I could for information for myself, my partner and my work, as unless you have it or care for someone with it, it is hard to understand xx

[nomoreheels]

I'm afraid many of us have had this experience at one time or another. If it's not that they think it's OA it's that they've never heard of it so no, you're not being a baby, we know his it feels as we've all been where you are just now. It's not that they're reluctant to believe you it's that they don't understand. But of course would you understand if you hadn't been diagnosed? I don't think I would. I knew my Nans fingers & toes were inflamed & nobbly but I didn't appreciate the pain she must have been in, I do now! Anyone who's not experienced the pain in the early weeks following diagnosis before the meds have had time to work hasn't had RD!

There are lots of downloads on the NRAS site, some are also available in hard copy. nras.org.uk/publications/all

Next week is NRAS RA Awareness week, nras.org.uk/ra-awareness-week. I'm hoping there'll be some mention of it on TV, that seems to reach more of the population.

[Damaged]

I can relate. The problem being it is an invisible disease, mostly. The other issue is what Dr Franklin referes to as An Identity Crisis in RA. Most doctors do not understand it is an autoimmune disease and arthritis is a symptom of that disease not the primary condition. You are not alone in this struggle.

Having said that, I strongly suggest you educate the ones that matter. The family, friends, other health care 'professional". That is unavoidable. It is also the best way to gain a better understanding of your condition. I am learning new things everyday and have been diagnosed for almost two years. It is a very complex disease which has a great range of affectivity. It can be mild but can also be quite severe. Build a strong support network and begin to put your needs first on that to do list. I am grateful that my husband is supportive. He tries but it is impossible to grasp until you have first hand experience. The fatigue is almost harder for me than the pain. The good news is , medicine has found several effective treatments to help you manage your condition. I hope that happens quickly. Best wishes in the adjustments . Just breath! This to shall pass! It will be difficult but you are not alone. Sadly a very high number of people suffer from autoimmune disease. Sorry for running on. My daughter is coming to spend the day with me. She is such a Doll. She is in University, fourth year on Presidents List every year. At 21 she still makes time for her step monster lol I have one son by birth and two amazing step children. I met dad when they were five and nine, now 21 and 25. Without question, the greatest joy and achievement in my life has been parenting. I find myself bursting with pride every time I see them.

[Radiogirl in reply to Damaged]

Sounds like you are blessed with a wonderful family. I have three. My oldest son has been on the President's List every year,too. My daughter has blessed us with our fist grand daughter (3) and our youngest son is 19 and hasn't quite found his place in the world yet. We're hoping college soon. We have several furr-babies, too.4 dogs, 1 cat and 1 bird.

[Bully915]

so true if people cant see it then it cannot be happening and must be in our headswould like them to swap places for a day

[Debkimly]

I have heard about how they have a sore finger and it must be what they have. However, I really didn't understand the constant pain until I experienced it. Take it with a grain of salt, tell them they should see a Dr. and focus of yourself.

[Laura_dilcock]

This is so true. I used to try explain my pain/fatigue to my husband/colleagues/friends etc but now I just let them ignore it, I answer "yeah, fine 😊 how are you" when asked instead of complaining as there's no way others can understand I think. My mum has RA and I don't even think she understands.... her kids were grown when she was diagnosed, my little boy was 1 (now 3yo). People just don't understand that you have to choose which part of your life you will concentrate on each day lol.

[Cheylann in reply to Laura_dilcock]

Exactly the way I react as there is no point explaining as they just don't get it and u can't expect them to.

[Radiogirl]

Thanks Laura for your reply! Blessings to you.

Btw- how can I upload a pic to replace the smiley face? Thanks in advance for your response.

[cheshcat]

I just had a conversation a few days ago about that her OA really is not my RA. That my knuckles are red and inflamed like that because my body is attacking itself (she saw my hands, they are flared right now) it's not wear and tear. I'm not sure she "got it" but I tried.

I have to say though, my mom has had RA for 30 years and until I was hit with an auto-immune disease, I really didn't fully understand. My mom is the only one that truly understands what my pain and fatigue is right now.

I'm not sure I have the words to truly explain it? It's not "being tired". It's not "I had a busy day tired". Fatigue is full body and you are done for that day. End of story.

So I do understand why they have a hard time because even I didn't fully understand until I experienced it.

I'm trying to educate my close family (husbands and kids) but I can't seem to get the point across, fully. What I told my husband is to think to a time when he's been sick, like with the flu. Some days I feel like that but I don't have the flu. And some days are like a bad cold feeling - minus the cough and runny nose (those are good days ). That's how I try to get it across, by something they've had personal experience with. My family is wonderful, they just don't understand.

[Hidden]

Yes I know what your saying. I'm sure my family don't fully get how I feel. I googled so much when I was diagnosed ,it was quite an eye opener

[sandraw21]

Oh poor you. I have had it for over 30 years now, diagnosed in my mid twenties. I went through it all, and it does eventually settle down - or maybe I just got used to the pain

It doesn't matter what they all say, they do not understand. You just have to be concerned about YOU. Rest as and when you can, don't go out when you are in pain, rest. This unfortunately sifts out the real friends from the ones who aren't. Your friends wull be there for you when you come out the other side of this initial period.

Do you struggle with a particular joint, or is it all over. There are things you can get for knees, back and hips which can help. But really the best thing is rest, you have to learn to protect your joints. The more you do to protect them, hopefully the less damage will be done.

Do you have enough pain relief from your GP ? If it isn't helping, go back, if nothing is helping at all, you can ask to be referred to the Pain Clinic. You have entered another world, yes they have a clinic specifically for pain

Unfortunately I have had plenty of experience in all this. So I hope I can help you find your way through it. Chin up, and smile - things could actually be worse

[Radiogirl]

Thank you very much for all the advice. My family doesn't understand my need for rest as much as they understand my pain. I feel like I just appear lazy to them. There are days I just can't get out of bed, usually if I've overdone it a day or so earlier. Things need to be done, but I pay miserably for it the next day.

Steroid shots for my 2 trigger thumbs and trigger left ring finger. My 2 Carpal Tunnel Release surgeries have helped a lot. I have a lot of wrist pain, finger joint pain, neck and back pain. My knees are shot, but I'm guessing more to wear and tear from earlier years of dancing and gymnastics. I've had lumbar and cervical neck steroid epidural shots without much relief.

I'm new, so my rheumy has only had me on Sulphasalazine 500 mg, 2x daily, but my labs have gotten worse so I am guessing he may switch me after I see him again in about 10 days. My liver enzymes and calcium are high. Just got tested for issues with my parathyroid and the pth ?) levels seemed ok.

One day at a time, I know. Thank you so much for your sweet reply, I pray you are blessed with relief, too.

[Cheylann]

Nobody who doesn't suffer your symptoms is going to fully understand. Just get on with your life and try not to worry about what they think or their frustration. That is their problem and u don't have to convince them of how ill u r as they simply don't really care hence the frustration.