It Started with a Rheuma….
I was diagnosed with Rheumatoid Arthritis when I was in the prime of my life. At the time I was heavily into Jiu Jitsu. I was a year into the sport and I was training about 4 days a week at least. I was also doing kickboxing. Because of both these sports, my road to diagnosis was a long one, a year long to be exact. It was long because what I thought was a sport injury was actually one of my unexpected symptoms of rheumatoid arthritis.
Looking back, it all started in my big toe. Yep, my big toe. Interesting place to start! Certainly the most unexpected symptom of rheumatoid arthritis that you can find but I thought maybe my toe was playing up because I was sprawling on it a lot. It didn’t concern me too much. What concerned me was my fingers. My fingers were swelling up and my hands in general just ached a little. I went to the physio and osteo. We had pretty much all agreed that I was getting a bit older, my body just wasn’t recovering as quickly as it used to. Nothing a bit of tape wouldn’t fix. We certainly didn’t think that what I was experiencing was in fact rheumatoid arthritis symptoms.
The Ah Ha! Moment:
I was also travelling A LOT. When I travelled, I let my body rest. I’m not the kind of person who exercises while on holiday. When on holiday I eat, I eat, I eat but I do as much walking as I can. What led me finally to think that perhaps my symptoms were not martial sports related was when I was in Japan. During my first trip to Japan, I became an onsen addict. In my mind, the onsen was an elixir, it was sent from the Gods and could heal anything. But guess what? It didn’t fix my toe or my hands and fingers. In fact, when I got home, it got worse! What the?! THAT’S when I knew something was NQR. My osteo was the one to suggest a blood test to rule out arthritis.
Welcome to Rheumatoid Arthritis HELL:
When it was finally confirmed, the inflammation already had a year’s head start. It was almost overnight that the inflammation reared it’s ugly head. It was as if the Rheumatoid suddenly came to life and declared ‘Ha! Now that you know I exist, let me show you what I’m about!!!!!’ I felt like I was being possessed. I’m sure that if I was living in the dark ages, I would’ve insisted on an old priest and a young priest. Come immediately and cast this evil being out of me!!
Like I said, it was as if overnight I could no longer recognise my own body. At 38, I was healthy, active, confident, strong and fit. But once R.A hit, I could barely move. At night, I couldn’t sleep because my body just ached. I couldn’t roll over. Well, I could but it took a hell of a lot of effort so I just didn’t do it.
Wait… it gets worse
The mornings were hell. My hands were so stiff and sore to the point where I couldn’t even flick the light switch. My legs were the same and each morning I thought I was going to wet myself because I couldn’t get to the toilet fast enough. I also live in a two-storey house so it would take me a good 10 minutes just to walk down the stairs. My joints were locked up so tight that it took considerable effort so I had to take breaks while walking down 20 steps!
But you know what the worse thing was? The fatigue. It drains you. Your body becomes like a damaged battery, needing constant charging. I could go on but I think you get the picture. I started to hate life. Learn from me people! If you so much as think that you may have RA, go and seek medical advice NOW! Even unexpected symptoms of rheumatoid arthritis should be looked into, remembering this all started in my big toe! If you have an upcoming appointment with your rheumatologist, read here on how to prepare and get the most out of your visit.
Rheumatoid Arthritis Medication and Treatment – Part 1
Medication has been my saving grace. Medication and pole dancing (I will elaborate on the pole dancing in a later post) has helped me rebuild my body and my life. I’m about 60% to where I was pre-rheumatoid but I am hopeful and enthusiastic. As my rheumatologist keeps saying to me, ‘there is light at the end of the tunnel. We just don’t know how long that tunnel is for you but there is light at the end.’ So I’m holding onto that. I am moving in the direction of the light. Slowly but surely. I’m hoping some of you out there who are also in the tunnel will reach out to me so we can walk through it together. I’d like some company.
And you?
There are a range of symptoms of rheumatoid arthritis. You can have one or all of what I just mentioned. You may even have had unexpected symptoms of rheumatoid arthritis yourself.
Comment below of your rheumatoid arthritis symptoms and subscribe to my email list so you’re always up to date with the latest Rheumas.
If you have been diagnosed, you need to read about my tried treatments.
Hi!
What you said about diagnosis and symptoms was EXACTLY what I experienced last Friday. I had a sore knee and a sore shoulder but dismissed both as being old injuries then suddenly it came into lots of other joints in my body, so I got a blood test and the VERY day that I was told “you have RA” was the day I had my first flare up! In the middle of the night I thought someone had snuck into my room and poured petrol on my right hand, setting it alight! I had taken one dose of Celebrex and some Panadol Osteo. The pharmacist told me the next day that it may have been a “stress reaction” to hearing the news. (???) I too, feel like I have gone from fit, healthy 45 year old with ZERO health issues, never taking so much as a vitamin pill to crotchety old woman who walks like a newborn calf in the mornings and gets teary if the kids she works with ask “ Miss can you open my lunchbox?” No, no I can’t.
Lainey, I’m a teacher too and RA has impacted every part of my life especially my work. I’m going to discuss this in my next Rheuma. What kind of teacher can’t even sit on the floor with her students? Sometimes I just have to and it’s so embarrassing when I try to get up. I’m sure you know what I’m talking about! Subscribe to The Rheuma Mill and we’ll get through it together x
I HAD to retire from teaching in 2011. I was diagnosed with RA in 1998. I could no longer teach high school students History in Chicago public schools. I could no longer move and up until I retired I had been on ALL known rx’s including biologics. About the time I retired I had just switched to Orencia and Imuran. These rx’s have made my life more normal. I can move again because of these rx’s.
Thank you so much for sharing your story Jill. I’m so glad that you’ve been able to find some normality thanks to meds.
Hi I believe I have had RA for a long time undiagnosed. Late last year I contracted sceptic arthritis in my right wrist. Terrible condition, lost the use of my hand for 4 months and still can not make a fist to this day. Only a month later was diagnosed with RA but due to septic arthritis can not use alot of medications for RA due to CRP levels being too high still. Because I am allergic to over 8 different antibiotics it makes it hard to get rid of septic arthritis.
Hi Karen,
Thank you so much for sharing your story on The Rheuma Mill. I am sure it will help so many. How very frustrating for you! I am so sorry that you have to endure all this. There is just not enough awareness out there when there needs to be. The condition develops so fast and early detection is so vital. I hope you are in good hands and will find some relief to your pains soon.
This post made me cry. It is both heart-breaking and refreshing to have someone understand what I am going through so well. The part about rolling over in bed and trying to get down the stairs was as though I wrote the post myself. The pain is unbearable some days. When someone says “I am sorry that you are having a bad day” I always quickly reply “It’s ok”… well today, I have decided it is not ok. Being in so much pain that you cry trying to get down stairs and rolling over in bed makes you moan in pain… IS NOT OK! I try to freaking hard to be positive about my disease. Always looking for the silver lining and growth and opportunity. I am not sure which is most draining, my pain or forcing myself to be positive about it. But I will not give up. This will make me stronger.
Hi Lesa,
Thank you so much for your contribution to The Rheuma Mill. Yes! Don’t give up! I know some days we feel like giving up especially when the pain is so bad but it really is just temporary. Keep moving and keep looking forward and you will get there. There is plenty of resources here and I’ll keep adding to it. If there is anything specific you want help with navigating, let me know. RA will make you stronger, just like it made me.
Chelsea
I too, am a young person recently diagnosed with RA. Starting at about age 15, I had widespread pain in my joints and muscles. My PCP said it was parvovirus(people get it too, not just dogs!) and would go away in a few weeks. It never did and I ended up being referred to rheumatology. I was diagnosed with fibromyalgia because I fit the definition of basically having something but nothing identifiable. I’ve been treated for that ever since. I’ve seen all kinds of doctors over the past 15 years (I’m 30 now). OBGYN, neurologist, neurosurgeon, rheumatology, and switched PCPs. Everyone ran more and more tests and added more medicines. The only thing that ever helped was anti anxiety and pain meds on a regular basis. Then, a few months ago, my rheumatologist retired. The first day I saw the new one, he diagnosed me with seronegative RA. My mom has RA so even though it wasn’t a total surprise, it was quite frustrating to have been with the right type of physician the entire time and being misdiagnosed. My new dr said it was RA the whole time and I should’ve been being treated and the progression could have been avoided. It’s now all in my neck and hands and it wasn’t to start with . I started Plaquenil and have had some fun side effects like vomiting and severe night sweats and hot flashes. I am hoping that with time, I will see some improvements but none yet. Anyone else have similar experiences?
Hi Chelsea, great to have you here and thank you so much for sharing your story. I know it will help many. From the thousands of people I hear from, I know you are not alone in your story. It is so frustrating to hear stories of misdiagnosis which is why I wrote this post. It is so important for people to be aware of the possible symptoms because early detection is paramount to getting proper treatment and not causing further damage. Unfortunately, I also hear many complaints on a daily basis about side-effects to Plaquenil. The period of trial and error with meds and then waiting for to see if they work is a long and frustrating one but I know you will get there. I hope you don’t mind but I have also shared your story in The Rheuma Room.
May I ask what the pain in your toe felt like? I have been on muscle relaxers and naproxen for months and neither help. The only thing that gave me relief for about 1 day was a 2nd round of steroids. My hips hurt so bad I can barely walk some days and sitting to standing is almost unbearable. The pain while sleeping….ugh! I still have no idea what is wrong and it’s been 6 months.
Hi Chastity! Thank you so much for contributing to The Rheuma Mill. In response to your question, The pain in my toe was like an annoying ache. It was like a stiffness that wouldn’t go away. I couldn’t bend or release it. It just felt locked. It’s best to go see a rheumatologist. If it is an auto-immune/rheumatoid arthritis thing then you have to get onto some better medication. Rheumatoid arthritis or any auto-immune condition can get real ugly real fast so best to get on top of it now. Please keep me updated.
Hello! I’m 30 and have had issues with my knees my whole life. Recently they’ve been getting worse. If I bend them, pain. If I straighten them, pain. Stairs are getting harder. And as a preschool ESL teacher, I have to get on the floor a lot. I’ve been at my current location for a few months and I’ve noticed a huge difference in my ability to get on the floor and get back off the floor. The classes are thirty minutes at a time and by the time the class is finished and I need to go to my next class, I can barely unbend my knees most days, especially my left knee which I had surgery on about eight years ago. I’ve also been noticing more pain in my fingers. Just kind of achey. And every morning I’m getting more stiff and my feet hurt sooo much for 5-10 minutes as I try to walk around. I also have depression. I only mention that because of my fatigue. I just always thought the fatigue was from the depression.
I’m saying all of this because I’m wondering if it is RA? My birth dad has it so I have family history. I’ll be going to a doc as soon as I can find one who speaks English (I live in South Korea). Advice? Questions I should take to my doc? Thanks!
Hi Suzann! Thank you so much for your comments. I’m sorry that you are going through this. As my article explains, there are many unexpected symptoms of Rheumatoid Arthritis and what you are describing does sound like it may fit into this category. My advice would be to see a Rheumatologist as soon as you can. My article https://www.therheumamill.com.au/rheumatologist-visit will definitely help you and I offer tips on fatigue in this article https://www.therheumamill.com/rheumatoid-arthritis-fatigue-symptoms. I wish you luck finding a doctor in Sth Korea, I absolutely loved my time there as an exchange teacher. You might have to write a detailed letter explaining your symptoms and have it translated. Let me know if I can help further.
Thank you so much for writing this article. I have been experiencing some of the symptoms you’ve mentioned and had it not been for your article, I would’ve looked in another direction. What is your advice from here? What can I expect from the doctor?
Hi Gary! Thank you so much for your comment and contribution to The Rheuma Mill. I was compelled to write about unexpected symptoms of rheumatoid arthritis so others can get diagnosed early. Early diagnosis gives people a much better chance of remission. I would recommend you to go see a rheumatologist. I’ve written an article that will help guide you. http://www.therheumamill.com/rheumatologist-visit
I’m not sure if I have RA or not but reluctant to discuss. Can I send you an email?
Having gone undiagnosed for years, I’m glad to have bumped into this post. I have some of the symptoms you’ve mentioned so will have this checked out further thank you
Thank you so much for posting this. I have been experiencing some unusual symptoms and wasn’t sure if what I have is rheumatoid arthritis. Now that I have read this, I will go and look into it further.
Hi Serenity! Thanks so much for sharing your thoughts on The Rheuma Mill. I’m glad this article has helped you. It’s important for the wider community to be aware of not just the common symptoms but also the unexpected symptoms of rheumatoid arthritis. Early detection is key in achieving remission. I have written a post to help anyone with an upcoming rheumatologist appointment that might help you too. http://www.therheumamill.com/rheumatologist-visit
Hi Jacqueline! Thank you for your comments on The Rheuma Mill. Any symptoms, however unusual or mild should be checked by a rheumatologist. I wish you well.
Hi Paula! You absolutely may! I have lots of people who prefer to get support privately. I am more than happy to help where I can. You can fill out the contact form or message me through the Facebook page.
Funny because I had the same symptom in my toe, actually my foot doctor was the first doctor to run a blood test for RA before my internal medicine doctor Cudos to him!
Hi Mattie! Thank you so much and for your contribution to The Rheuma Mill. The toe is such a random place isn’t it but since starting this blog, it seems to be a common place. I’m so glad your podiatrist picked up on it. So much more awareness is needed for this and you have helped to validate that. Best wishes x
OMG My symptoms began in my toes too. I’m glad I’m not the only one. Thank you for raising awareness. Checking out your shop now to get me one of your cute shirts. Thank you!
This article led to my diagnosis! Thank you so much! I’m now on MTX and hydroxychloroquine so hopefully this will help. Keep up the great work. I also grabbed your guide. So handy!
Hi Billie! Thank you for your contribution to The Rheuma Mill. I’m so glad my article helped you. It’s so important for everyone to be aware of the unexpected symptoms of rheumatoid arthritis. Early detection is key!
Hi Sindi! Thank you for your comment! It really helps to validate my blog and to help raise awareness for others. Yes! Check out The Rheuma Mall! the-rheuma-mill.myshopify.com
Hi Billie,
Good to know I am not the only one and that there may be light at the end of the tunnel. I am going on almost a two year diagnosis. It all started with my finger blowing up, then I had a disc herniation at C5/C6 in my cervical spine. Ended up having surgery and they were hoping that was the culprit of many of my symptoms….nope. Took away my excruciating nerve pain and spinal cord compression, but I was left with a host of other issues. The fatigue is crazy, joints ache all of the time, major soft tissue swelling. There are days I can barely walk. No one understand it unless you live it. Just had a MRI and it shows arthritis. Talking to the rheumatologist this week. All signs point to RA, but bloodwork comes back good. Ugh. Just want relief. Glad I found your post and joined your email.
Hi Marci! Welcome to The Rheuma Mill and thank you for your story. I’m sorry to hear that you are going through so much. Hopefully you’ll be able to find relief soon. Please refer to my article, if you haven’t already, regarding your appointment with your rheumatologist. http://www.therheumamill.com/rheumatologist-visit. Keep us posted!
Great article! You’ve highlighted the importance at getting checked out at any suspicion of the disease. Not many people know about rheumatoid arthritis let alone it’s symptoms let alone unexpected symptoms of rheumatoid arthritis. Thank you.
Hi Ralph! Thank you for your contribution to The Rheuma Mill and feedback. You are absolutely right! I hope my article is getting out there and informing the public not just about RA and it’s common symptoms but also the unexpected symptoms of rheumatoid arthritis. Thank you!
Thank you for this article. It’s good information to keep in the back of your mind so you know what is related to rheumatoid arthritis and what isn’t. I definitely agree that if you are unsure, to seek medical advice. Great blog. I bought your pink gloves! Can’t wait to try them out.
Hi Pauletta! Thank you for your comment and contribution to The Rheuma Mill. So happy that you like the article and for encouraging others to seek a doctor if they are unsure. I can’t wait for you to get the pink gloves too!
I think my son may have rheumatoid arthritis. He is showing a symptom you’ve mentioned. I will take him to a rheumatologist after reading this article. Thank you
Hi Peter! Thank you for your comment. I am glad that you have found it useful and will take action. Early detection is vital if you son does have rheumatoid arthritis. Let me know how you go. Good luck!
Honest article about symptoms of RA including the unexpected ones. Absolutely agree that you need to get medical advice quickly. I wish I had. Subscribed.
Hi Glenda! Thank you for your contribution to The Rheuma Mill and validating what I have written. Thanks for subscribing!
Great article. As with the other comments, it’s important to get check out if you show any of the symptoms. I was lucky and got diagnosed early. I’d hate to think of what I would’ve experienced if I had ignored it. Thank you for putting this information out there for others! I purchased your pink compression gloves and LOVE them.
Hi Callie! Thank you for your comment and feedback. I think it’s great that those with RA are leaving comments like yours. It validates the importance of getting to the doctor ASAP to check out any unexpected symptoms of rheumatoid arthritis. I’m so glad that you like the gloves. I’ve gotten lots of good feedback about them. I love them too!
Good article. I can relate to some of it. Can you provide more of a list of symptoms?
Hello! Thank you for your comment and suggestion. Symptoms is something I was looking to write about soon. Subscribe to be notified of when that gets published!
Hello from India I been having lot of pain in my leg and hands. Very like what you say. This rumatoid arthritis? What do i do?
Thanks so much for this article. It makes me feel that I’m not the only one and not going mad. I’ve been experiencing some of those symptoms for years and was just told it was because I’m fat. I guess I’ll go see the doctor now and demand some blood tests. Is it okay if I email you?
My wrists and hands are the hardest hit areas. It feels like someone has put them on ice, they are that stiff. But they are warm to touch and very swollen. I can barely use them. I have purchased your compression gloves and CBD oil (why is it only $5?) so hopefully that will help. Thank you for making me feel better about taking pills my family don’t understand.
Hi Audrey! Thank you for your contribution to The Rheuma Mill. I’m so sorry that you are experiencing such pain. My hands and wrists are also my troublesome areas. Thanks for purchasing the gloves through my site, they are a lot cheaper than elsewhere. The CBD oil is a special promotion at the moment by Joy Organics. I’m glad you jumped on the opportunity to get them for only $5. It’s one of those rare things that sometimes things that are too good to be true are in fact true. Don’t feel bad about the meds, you need it for your condition and unfortunately only those with the condition will understand. I have written about ‘Explaining rheumatoid arthritis to loved ones’ that you can peruse here.
Hi Keren! Thank you so much for sharing your personal experience. How horrible that you’ve been told that but unfortunately, I’ve heard similar stories from others. Definitely get checked out by a doctor. I provide tips on getting the best out of your appointment here. Many of my readers email me privately.
Hi Visi! Thank you so much for your comment. I’m sorry you are experiencing pain. I can’t say whether or not what you are experiencing is rheumatoid arthritis. My suggestion would be for you to speak to your doctor and ask for blood tests. You may possibly need a referral to a rheumatologist if you are experiencing joint pain, swelling and fatigue.
Hello. fantastic job with this article. This is a excellent story. Thanks!
I have been living with this horrible disease for a decade but had all the usual symptoms. I was completely unaware of the unexpected symptoms of rheumatoid arthritis. Great article to inform others. Thanks
Hi Erick! Thank you so much for your contribution to The Rheuma Mill. Thanks for validating the importance of knowing the unexpected symptoms of rheumatoid arthritis.
Hi Hora! Thanks so much for your feedback, it is much appreciated.
I did not know of these unexpected symptoms of rheumatoid arthritis. I’m more convinced now that maybe I have it. I think now that I’ve read your article, I will go ask a doctor.
Hi Marco! Thank you for your comment. If you suspect that you may have rheumatoid arthritis and are displaying these unexpected symptoms of rheumatoid arthritis, then yes, you should go see a doctor. Early detection will put you in better position in term of treatment success.
It’s hard to find information about the unexpected symptoms of rheumatoid arthritis. Thanks for providing the information I was looking for. It has more value coming from someone living it and has actually experienced it.
Hi Kampha! Thanks so much for your contribution to The Rheuma Mill. I’m so happy that The Rheuma Mill provided you with the information you were looking for.
Very informative piece. Nice to hear a personal experience. You seem to be dealing with it very well which gives me hope.
Interesting article. RA can affect us in such different ways. Thanks for the advice.
Very interesting.
I have all sorts of weird symptoms but not sure if they are related to rheumatoid arthritis or maybe something else. Your article has me thinking that maybe not RA.
I’ve learnt so much about rheumatoid arthritis from reading your articles. Thanks for all the information and resources you provide.
I had all the common symptoms of RA – pain and swelling in my hands and knees. I had no idea about all these other ones. Thanks for sharing such important information.
Amazing information on this blog. So glad I found it. I see a specialist next week and I’m feeling more prepared for it. Thanks for making it less scary.
This is a great blog. Lots of great information for those newly diagnosed. I have just purchased your CBD oil. Is it always $5?
I had some of these symptoms too and it took many years before my diagnosis. It would’ve been nice to have a blog like yours when I was diagnosed. Still many great resources for us veterans here. Thanks
Hi Delois! Thanks so much for your comment. I hope that this article will help someone get diagnosed sooner rather than later. Appreciate your feedback.
Hi Moses! Thanks so much for your feedback. The CBD oil is currently $5 as part of a special promotion. I honestly don’t know how long that special is available to us. I’m glad you jumped on the offer because it is usually $30!
Hi Katie! Thanks so much for your comment. Wishing you all the best at your appointment. I hope you’ve read my other article about rheumatologist appointments to help you prepare.
Hi Hilda! Thanks so much for your contribution to The Rheuma Mill. I appreciate you sharing your thoughts and your experience.
Hi Eegle! What a cool name! Thanks so much for your feedback.
Hi Nicolais! Thanks for your contribution to The Rheuma Mill. Unfortunately, I am not a medical professional so I can’t say either way. It is best to seek a doctor’s opinion. If it is joint related then I would recommend a rheumatologist.
Hi Kris! Thank you!
Hi Nolton! Thanks for your comment and yes, RA can present so differently so it’s important to be informed. Thank you!
Hi Coleman! Thanks so much for your feedback. I’m so happy that my article has made you feel somewhat more positive about the future.
Hi to all my fellow RA warriors. I am on methotrexate and get monthly Cimzia injections. I function fairly well since I retired. Typing was becoming impossible but FATIGUE can hit out of nowhere. Never been one to nap but am learning. Keep fighting and smiling.
Hi Karen! Thank you so much for contributing to The Rheuma Mill! All the best to you and hopefully the medication you’re on will help with the fatigue over time. All the best!
I first noticed mine in my feet as well. Yes the earlier the diagnosis the better. My husband is a doctor and he would tell me his concerns. I’m one who believed I could talk myself out of it with positive thoughts and diet. Now my feet require surgery they are so deformed and I’m having to get injections in my hand. It seems to have happened so fast. I have always been active running marathons, cycling, anything. I got diagnosed last Nov and quickly thought I was in hell, I wont go into what most here have experienced. I’m just now sort of feeling like things will be ok. I have been working out in my yard today moving pots, I had to stop because my feet, shoulders started to hurt. I became frustrated and decided to get online, research, and stay positive . My Rhuemy says the Humira has plateaued and I’m 80% controlled. In order to keep from having to take another med along with the weekly Humira I’m looking to for anything to help me get better. I know I must stay positive and grateful for the improvement I’ve shown so far.
I very seldom have fatige and 90% of the time i feel great EXECPT for pain, swelling, weakness and stiffness.
Its hard to explain in a way. I feel great except for the effects of RA, does that make sense !!!
Supplements have gave me my life back and helped me tremendously.
Daily,,,,
500mg magnesium
6mg boron
5 capsules turmeric
297mg potassium (3 tabs)
1,000mg vitamin C
Hi Chris! Thank you so much for visiting The Rheuma Mill and your contribution. Thank you for sharing the supplements that have helped you and yes, I totally understand what you’re saying!
Hi Amy! Thanks so much for sharing your experience and story here on The Rheuma Mill. Your story sure does sound familiar! It helps to know you’re not the only one experiencing this. I hope you find something to help supplement your treatment so you can get back to being as active as before!
I could cry, I’m so relieved to have found your blog. I’ve felt incredibly alone the last few weeks.
I lost both my Grandmothers this year, 6 months apart, I had the privilege of being a caregiver for both of them. It made losing them so much harder.
Over the last year I’ve been having more aches and pains, especially in my hands, and stiffness in my hands and ankles.
I just kept shrugging off my aches, figured I needed to exercise more or that I was just imagining things.
I own a hair salon and the week after losing my Dad’s mom I decided to paint the building by myself.
Swollen feet that night but I expected that after 12 hours painting in the heat.
The next morning my hands were swollen which was weird but I assumed I was dehydrated.
I had been having dizzy spells for a couple of days.
As the day went on I got a terrible headache, kept drinking water and Gatorade.
Fell asleep on the couch that evening and woke up with every single joint in my body hurting, stiff and swollen.
After another couple days I realized this wasn’t dehydration.
Went to my doc, had blood drawn and came back with high rheumatoid factors.
That was about two weeks ago and I’m still waiting to get an appointment with a rheumatologist.
I’m on anti inflammatory meds but they are barely helping.
I’m a full time hair stylist and I’ve been rescheduling clients left and right.
Today I went in for two haircuts, the pain and exhaustion ever since have been overwhelming.
My body wants sleep, but I hurt so bad that I can’t rest.
I think I’m desperate to feel heard, my family is sympathetic but they don’t understand.
The wait to see the doc is so frustrating, I feel so desperate to start doing something that will treat the illness not the symptoms.
I’m eating an anti inflammatory diet, soaking most nights in the tub with Epsom salts.
This incredibly long comment is all to say thank you, thank you for sharing your story and helping scared, hurting people like me to find some common ground.
I’m definitely taking notes so that I can be prepared if I ever actually get an appointment to see a Rheumy.
Thank you again and sorry for the crazy long comment.
Hi Elizabeth! Thank you so much for your message. I am so sorry you are going through so much pain and frustration. I’ve been there and I know how lonely and desperate you are feeling. I wish I had a quick fix for you but I don’t. My only advice is to just do what you have to do and don’t feel guilty about it. If you have to rest and sleep all day, so be it. If you have to cry, cry. If you have to ask for help, do it. Things will get better I promise you. The wait to see a rheumy can be long, maybe a steroid might help take the edge off? It sounds like the inflammation has really taken a hold and you need some NSAIDs and DMARDs to really attack the inflammation. Not sure if you’ve read my article http://www.therheumamill.com/rheumatologist-visit but that will help you get the most out of your rheumy visit when you get an appointment, hopefully soon. In the mean time, you can join The Rheuma Mill’s private Facebook group and get more advice from other RA warriors there. https://www.facebook.com/groups/rheumatoidarthritiscommunity
Please keep me in the loop. Don’t ever feel like you are alone.
Hi Maly,
Thank you for writing this! If I told you the amount of doctors that I’ve seen up to the point of finally getting my RA diagnosis just a few weeks ago, your head would explode. I am 49 years old, and for over 13 years I have been through all kinds of doctors , tests & medications due to awful hand swelling,& living in pain throughout my body. Nothing worked,& no info had come up on the tests. I couldn’t even grasp the sheets while sleeping my hands were swollen & hurt so badly. As years passed, I was then diagnosed with Fibromyalgia. Two hand surgeons said that I had carpel tunnel in both hands, but not bad enough to do surgery. Rheumatology had been consistently doing bloodwork panels, and recently did another autoimmune panel and FINALLY, a few weeks ago it showed positive on the blood test that determines RA. She told me this is why autoimmune can be hard to diagnose, you can have symptoms well before it shows in bloodwork. The meds don’t sound fun, due to side effects, but Im hoping for a good result. Its hard to stay positive, but after hitting so many dead ends with this over more than a decade,I finally feel like there may be some sort of resolve. Hang in there everybody, you are not alone.