Undiagnosed, anxious, and looking for positive stories. -Update 4/8/2015

I will start by saying that I do have a rheumy appointment this coming Monday, after getting a new primary that actually listened to my needs. I just hope it's not too late. I'm 29, overweight, but I do walk roughly 30 minutes a day in some capacity due to working in NYC.

I won't go into great depths, but the first Saturday in November, I was raking outside when both hands became incredibly stiff, and the pads of two fingers swelled. This lasted several hours. The following two weeks, I had what could be described as carpal tunnel/ulnar nerve entrapment symptoms, and then the middle knuckles in both hands became red, and warm to the touch. Currently, the redness is VERY persistent on all of the large knuckles of both hands, with the "pip" joints occasionally as well. I don't have frequent pain, but I do get pain in the large joint in my right thumb, as well as my right index finger, especially with prolonged mouse/cellphone use, writing, etc. I also get pain in the small and large toes of my right foot, and tightness in both knees randomly (not after sleeping ever, mostly during work/commute). The only "morning stiffness" I have is inconsistent , and lasts usually no longer then 10 minutes, although I on occasion get stiff during the day.

I had 12 different blood tests run in mid-November (RA factor, C-reactive, sjogrens, ETC) and nothing showed abnormal outside of rather low vitamin D levels. I DID show *some* inflammation in the test (i was 17, where the high normal was 20+), and my new PCP had me get hand xrays, which did show some signs of possible wear, but at this point very minor.

I've always been anxious, and have dealt with depression for a lot of my life. Obviously, these symptoms are only exasperating that problem, and making things harder for me. Like most diseases, browsing online leads you to believe that RA is essentially a sentence to death, or becoming crippled, which is terrifying. Does anyone here have any positive stories?

Update 4-8-2015, I somehow missed the ability to edit posts! My rheumy appointment didn't go AT ALL like how I wanted, and I left with zero answers and even more confusion. The doctor told me that my #'s would be higher if I had RA, and he had no clue why my knuckles were red. I decided pretty much right away that I wouldn't return back to him, so tomorrow I'll be seeing my primary again about seeing another rheumatologist, and I'll also be requesting him to do new blood work for me to see if my #'s have progressed at all. Symptoms have stayed roughly about the same, although I feel like the joint pain is more consistent now in certain fingers...but still not frequent.

Interestingly enough, while I was away on Vacation, I didn't have AS MANY issues with hand tightness and redness. Walking around in the desert (Las Vegas) at one point did cause my hands to become very, very tight, it didn't last for a long period of time however. I suffered far less instances of pain and tightness which I found curious.

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  • I was diagnosed almost a year ago. I'm 31. Mine came one after a bout with shingles. I went from being totally normal to basically paralyzed with pain in a matter of 2 or 3 months. I had a new GP who got me in to see a specialist IMMEDIATELY (thank goodness). I was using a cane and practically crying in pain in her office. The pain in my feet and hands was unbearable. And I broke my back in a horse accident and walked half way home. So that's saying something about my pain tolerance lol. My rheumy is a sweet old lady who tells it like it is. I started on drug therapy and had cortisone shots in my hips that day. Within 2 days I could walk again and dress myself.

    I've since joined a gym and started running again. I've always been active but overweight. I've recently started having flare symptoms again and see my doc next month.

    Try not to stress too much. If I can say anything its keep moving. Losing my range of motion was so scary. My goal was to be able to run again, and I run 3-5 miles 3x a week. Take an active role in your care. Ask questions and don't go blindly into therapy. I had bad reactions to drugs and stopped taking them. Don't get any medication pushed on you that you're not comfortable with. Starter options are usually methotrexate and Plaquenil. Read up.

    Hope this helps.

  • Thank you for sharing your story! I've definitely been trying to stay as active as a I can, which sometimes is easier said then done with my travel schedule (out of the house from 6:00am-7:00pm). I do get to walk about 30 minutes a day quite regularly though, so that's a plus except the few times when my knees are acting up haha.

  • Low vitamin D can cause joint pains as can low vit B12. Perhaps you could get vit B12 tested and then if required, supplement with these? It might help and you will at least feel that you are doing something to help yourself. Of course, we aren't allowed to give advice on here but that is what I would do as this could possibly make a difference to your pain levels. I don't have RA, I have Spondyloarthropathy which, although only diagnosed last year, I believe I have had for more than 20 years. It is not a death sentence, I have pain, sometimes worse sometimes better, but you work through it and find ways to cope. I am now on Humira which has helped, maybe not as much as I hoped but nevertheless it has helped. Please don't despair, there are many people on this forum who will be able to help you, they are really kind and someone is always around. Clemmie

  • Hello,

    You wanted a positive story, well mine is that I've had RA for 17 years but last year I discovered a diet which brought my inflammatory marker down from 98 to 7! I have tried different diets so I was really sceptical.

    It takes a lot of willpower because you simply cannot eat like other people it does work. I've been in so much pain at times I'd rather be dead at some points, but you're in the early stages and in a perfect position to arrest the disease before you get the RA factor. The diet was put together by a scientist who had RA I found the link on utube:

    good luck

  • Interestingly enough, I've been reading a LOT about the benefits of the mediterranean diet and battling RA. I'm going to check this video out tonight when I come home from work. Thank you so much!

  • I lived in the Med for 11 years & I can recommend following the Mediterranean diet. I eat more or less how I did there & it's easy enough to do yourself without the need to buy into a plan.

  • I have just watched the video and was very impressed! I've bought and down-loaded the programme. I hope it will tell me how to introduce the regime. My markers are around the 40 mark and I'm on MTX, Enbrel, Sulfa and 6mg Prednisilone. I'm not inclined to stop them abruptly, so I hope one can dovetail, then gradually phase out the meds. Rather than hog this space, which is for JamesPlagued, I'll post a question on this topic and hope to hear from you. Thanks.

  • If you do a search on "Paddison" in the HU search box top left you'll find a post from a couple of years back where Clint Paddison also chipped in as he's an HU member too.

    I'm not anti alternatives, and think that they may well work brilliantly for a few people. It's just that I haven't seen any real evidence that they'll work consistently for more than those few. I know it didn't work for me. But who knows, you could be the lucky one. Here's hoping!

  • That video was FANTASTIC and has made me completely rethink my own approach. Thanks SO much for sharing

  • Hello there. Please be reassured that you will be well again. Present day drugs are very affective at controlling Rheumatoid disease

  • I'm another positive story. Like you, when I was first diagnosed I thought that was the end of my active life as I knew it, and was worried about being completely disabled. My disease started more aggressively than yours, so within weeks I went from completely healthy to struggling to get from the bed to the toilet.

    Anyway, I accepted the drug route and now I'm fine! Yes I have to take a lot of drugs, but I have few side effects from them and I have my life back. And it's been years now. So really don't believe all the stories on the net. The majority of people who get it are like me and can tolerate the drugs and do ok. But for an unlucky few it's much harder, but there's no reason to believe that you won't be a success story!

    Try to learn about the disease, and ask questions of your medical team, and decide what you want to do. A few people do find lifestyle changes (diet/exercise) work for them, but most find drugs more effective - but this disease comes in many forms. Anyway, the most import at thing is that it's your choice what you do, but just do something and don't ignore it and hope it will go away. So getting an appointment is a great first step.

  • Thank you for sharing! The idea of having to take drugs originally didn't sit well with me, but knowing how effective a lot of them are now, I've just kind of sucked it up and made peace with it. I have been trying to maintain a healthier diet (starting to ween myself into the mediterranean diet plan), and have found some success for the inflammation by drinking Green Tea. It's not constant, but seems to be pretty effective.

  • Hello there. Please be reassured that present day drugs are very effective at controlling rheumatiod symptoms. I have had RA for nearly thirty years during which time I have had two wonderful children, doing all the things most mothers do with their family. I have learnt to relax when I needed to without feeling guilty, taught myself not to worry and have confidence in my Rheumatologist. I hope you will be feeling better soon. Of this I am certain. Gentle hugs.

  • Thank you so much for this :) I've always had a pretty rough anxiety issue when it came to my health, and I had a scare right before this with potential kidney disease that lasted around 7 months where I was a massive, frightened wreck. Thankfully, it was misdiagnosed, but I think my hormones have been in bad shape ever since, and when this first started, I was like a total relapse of confidence.

  • I. to have a positive story, I have had RA for 17 years and been on various drugs, but now settled on Luflunmide and humeria. I am a mother of four and for a few years a teacher to

    I did get over weight and depressed, but the only person who can help you is yourself. I stopped eating refined carbs they were very bad for me.

    I lost the weight and keep moving even on bad days keep moving, it will loosen the joints and keep you functioning.

    Exercise is a natural anti-depressant, I walk at least 3 miles a day feet allowing, and I have invested in a light road bike, I now cycle every day, indoors on wet/cold days, out doors other times. I can now cycle for miles without any impact on my joints as it's so low impact. You need good padding in the riding trousers though!

    I have and will continue to cycle for charities such as NRAS and The British Heart Foundation, in sportives, the other riders are supportive and keep your spirits up as you ride around. Its a natural Buzz.

    I know how difficult it can be, especially in the early days Google can be a good source of info but also a bad one, don't believe all you read, as a lot of it is negative, talk to the RA nurses when you get a chance they are usually wonderful, there will be support groups near to you as well if you feel the need. Not one RA nurse or doctor has ever told me this is a death sentence, you have to be a little more careful around people with illness colds/sickness but other wise don't let it stop you.

    Alison

  • Thank you for sharing!

  • I do JamesPlagued but first welcome to us here & no need to be overly worried. There is a lot can & will be done for you but searching too much online just now may not help your worries & concerns. That said like you most people who use the site are worried pre diagnosis or struggling getting their RD under control as it can be tricky, you'll have gathered it's no quick fix generally! But there are some of us who choose to be on the site, like me, who are on the whole pretty well controlled but who choose to try & help & share our experience with those who aren't so fortunate. It's also great to communicate with others who understand just how it is living with RD, people who don't have it don't always get it.

    Mine was noticed in 2008, in my feet & I went to my GP because I'd been creosoting the garden shed & sitting on my haunches a lot & my feet became stiff, swollen & sore. She had her suspicions straight away & ordered bloods which confirmed seropositive RD so 2 weeks later I was at the diagnostic clinic having all manner of tests & imaging & left with a bag full of meds, hydroxychloroquine (DMARD), a short course of deflazacort (corticosteroid), celecoxib (COX-2 NSAID) & nabumetone (NSAID). I saw my Consultant 3 months later & he was happy with my reaction to my mix. Some meds have changed & others added since then, MTX was the major one which has been my most helpful one. The only op I've ended is carpal tunnel release & I put that down to early diagnosis & treatment & reacting, on the whole, pretty well to my mix of meds. There have been blips along the way but now I'm considered controlled.

    I hope other members share their experiences of diagnosis & treatment & your Rheumy has a good treatment plan for you. It does take a little patience in the beginning because unfortunately none of the DMARDs you'll discuss with your Rheumy are quick acting. They generally take up to 12 weeks to reach their potential, but hopefully your Rheumy will prescribe something to help your pain & inflammation for the interim. Starting as early as possible on medication is necessary to avoid damage & disfigurement so you're in a fortunate position having your first appointment so soon.

    I hope my experience helps. Let us know how you get on won't you?

  • Thank you for sharing! I will definitely do my best to keep the situation updated. I made sure to get an appointment with a rheumy that seems to have very positive reviews online, so I won't have any feelings of doubt, and one that's not too terribly far from my work place (Cabs are always easy to get near me, which works :) )

  • That's great, I hope it's a positive meet & you can start your treatment soon. The quicker you start on medication the better as none are particularly fast acting & can take up to 12 weeks to reach full effect so be prepared for that! Once it has though you should notice a big difference, I did! Good luck.

  • You will have read several positive stories. I'm sure that there are very many more, who do not feel the need to use this site. I'm going to explore the recommendation of Hungry Peg, so thank you for prompting her response!

  • I'm glad that this post could benefit somebody else as well! And you're definitely right! It's easy to forget that online health forums are generally for people looking for answers or having a difficult time, and not for those who are head on into the battle. Thank you :)

  • Please also bear in mind that those who have been able to control their condition and are able to lead relatively normal lives do not need the support of forums therefore the positives will not show up on web searches like negative stories. Farm

  • I try to keep this in mind as well, but it's definitely easy to forget when a bout of anxiety has kicked in. Thank you :)

  • Hi JP,

    welcome to our community :)

    Your story is very similar to mine even down to the pre existing depression.

    I started on 10mg of methotrexate (MTX) in September which was slowly moved up to 20mg which seems to be doing me well along with 5mg of folic acid once a week and naproxen (500mg as required up to twice a day). I don't get any real undesired side effects with the meds but I've also taken them with porridge or yoghurt to protect my stomach. I take trazadone to help me maintain a decent sleep pattern and to take the edge of any depression that might be trying to creep in on the back of my RA (I'd been off depression meds for about 5years but chose to go on to a tricyclic one for the side effect of improved sleep and to preempt any depression activity). I take turmeric capsules for its anti inflammatory properties, ginger for anti nausea properties (tea form and root form in salads and soups), flaxseed for the eye issue (it helps with dry eyes but needs to be in large amounts built up slowly - speak to your ophthalmologist about this if unsure mine recommend it and I am just beginning to get good results on 9 X 1000mg a day after seven weeks of taking it). I take extra vitamin D with calcium and drink enough water/herb teas to sink a battle ship to keep headaches to a minimal and help flush out any toxins.

    If you can loose the excess weight that will undoubtedly help as extra body fat brings with it inflammation of it's own... I haven't done any strick diet regime but have moved away from refined sugars and towards more fruit and veg. Become aware of hidden sugars in things like canned soups (which can have up to 8 teaspoons of sugar in them!) and flavoured waters which surprisingly can have more sugar in them than some sodas!

    I still enjoy my cappuccino when out but now it's a skinny decaf... no croissant or bagel but dried fruit or nuts ..... It that the sound of yawning I hear??? :)

    To help re keeping exercising I have my road bike on a turbo machine so that I can 'go for a cycle' as and when I want and it offers a change from walking especially when the weather is crummy.

    As you are having RA symptoms in your toes it would be good to see an podiatrist or go to orthotics to see if it's advisable to get special insoles made. I had some made 3 years ago in response to my initial knee pain as I was found to have weak arches and now I am waiting to take delivery of new, more cushioned, insoles designed to also take the pressure off my big toe joints.

    Re your thumb joints it might be worth seeing a occupational therapist re getting some support splints... I was given soft splints to wear when doing heavier stuff like gardening and repetitive stuff like prolonged typing/computer use -they are a godsend... I don't wear them often but I really appreciate them when I do.

    The long term prognosis does not have to be the horror story portraited out there... some have a really rough time and things get very tough very quickly and then for some things start and stay relatively mild... Hopefully we are in the later and doing positive health changes will help on some level. Quite a few of us use mindfulness meditation to support our emotional journey through this and some see counsellors/therapists to help.

    The meds can be scary but remember that when they are effective they stop the inflamation and joint degradation thus putting serious disability further away... Some of the meds are used, at much higher doses over shorter periods of time, are usedto treat conditions such as cancers and malaria, keep your feet on the ground (so to speak) re this and surround yourself with a good med team... be well informed and make measured decisions re your treatment and the impact will be less drastict than first feared.... I'm waffling now :)

    Go steady JP, keep your social network active and use your personal support network well (but not flippantly!) and you'll be OK.

    All the best

    Ali

  • Such good advice. I benefitted from that, too!

  • I really appreciate all of this information! Oddly enough, I've become pretty well versed with watching out for the trickery of food, although learning to cut sugar out is proving harder than I imagined. The kidney misdiagnosis I had caused me to have to eat a very low sodium diet in order to prevent stones, so I try to be mindful of what I'm buying at least:) I've begun drinking around 2-3 cups of green tea a day, and that definitely helps out. I'm beginning to explore some alternative vitamins like you mentioned as well.

    I'm definitely hoping that what I have is considered mild, and decides to stay that way. I feel VERY lucky as it is for having such a slow progression of symptoms, in comparison to some folks I've seen where it's 0-60 in a day. Posts like yours help soothe the mind, though. I can't thank you enough.

  • Just to add a little to Ali's reply, try not to just cut your sugar intake, reduce it slowly, replacing "bad" sugars bit by bit with "good sugars". If you do it too quickly you risk wanting sugar fixes & a reduced energy level which you'll need just now! I check labels on any packaged foodstuffs, tomato sauce, yogurts, the things we buy regularly for both myself & my h who is type 2 diabetic & you'd be surprised how many "hidden" & unnecessary sugars there are in some. Do you have the traffic light system on foodstuffs there? A quick look how high up the ingredients list the sugars (&/or sweeteners) are or under the listing for total carbohydrates - sugars is sometimes is all it needs to determine. I don't know if you'll be able to open this link but you may find it informative bbcgoodfood.com/howto/guide...

  • You know, I'm not too sure about the traffic light system, but that's something I'll keep an eye on. I do generally look at the ingredients and the values on containers to make sure it's not too bad before I buy it, but the sugar one has definitely been a big surprise to me. You don't really see just how much is in food you wouldn't expect otherwise.

  • You are welcome James, I've got a lot in return out of reading the responses to your post and stopping to process my own journey.

    Thanks

    Ali

  • My Rheumatoid Disease started with the SAME EXACT symptoms, felt as though I was reading what I had went through, and I FEEL FOR YOU!! Its scary at first and not knowing what Is going on is even more alarming , especially with the lab tests NOT showing anything abnormal... Which, That is EXACTLY what happened to me too!! My father has RD and his father had Lupus, so it was easier for them to narrow down what was wrong, but from my understanding , I have what they term as "SERO-NEGATIVE RHEUMATOID"... meaning I have the disease and everything that goes with it except the positive lab results !! .. (NOW, that is JUST MY UNDERSTANDING!! ) ... I have ALWAYS been an anxious person TOO!!.. PLEASE .. If you listen to ANYTHING , PLEASE UNDERSTAND Rheumatoid is NOT A DEATH sentence... It just takes adjustment !! I am 40 years old and since I was 13 I have watched my father deal and cope with Rheumatoid..( I have had it , doc estimates for 5 years but being treated for it for , just about a year now ).. SO...he has had a hip replaced, but he is resilient ! He keeps on trekking and not letting things get him down, because he worked through trial and error with his doc to get the right meds and biologics that help him manage and cope day to day!! SO , YOU CAN LIVE A HAPPY LIFE, it just takes ADJUSTMENT, Caring and Loving YOURSELF and Accepting that things are different and You can work with the changes and learn how to accept help and support from those that love you and care for you ! I am SO HAPPY you came to this blog, because I would have never come to a blog and its the BEST Thing I have done.. THIS GROUP of People on here have been the BEST THING TO EVER HAPPEN TO ME! They understand, care, have compassion, listen, share and are MOST IMPORTATNTLY ARE BRAVE enough to be brutally honest and open up and it does HELP!! Not just others it does help yourself! :D I hope you go to a Rheumatologist and find a medicine you are able to cope with and that helps with the flare ups and makes your life easier! You will be amazed at what you can DO for YOURSELF! I amaze myself everyday and learn how to love myself and learn how to take breaks and rest when I need to as well! Much Care and LOVE ! Tommy

  • Wow, thank you so much for sharing your story with me! I've posted on other groups before, but never received anything like what I've seen here. Even just the minor time I've been here has been beneficial to my mental health, which is kind of shocking in all honesty!

    My biggest challenge right now is to try and stop dwelling on it. When the symptoms seem to briefly flare and my hands start getting super hot and tight, it becomes so hard to put it to the back of my mind...but it's definitely something I need to strive for.

    Thank you again, and I hope that you keep rocking it out!

  • :) I am GLAD WE ALL HAVE EACH OTHER ! and I am typing NOW with the "Hot TIGHT" hands.. shew.. they feel like they are attached to strings and someone is pulling them TIGHT and they are drawing in and cramping up BAD ! But , I know SPRING IS COMING and it is going to be a bit better! :P Just going to keep trying meds til the right one works and WE can SHARE WITH EACH other what is best . .maybe it will help !? You STAY STRONG !!! You are NOT ALONE ! THANKS FOR SHARING ! Sending MUCH CARING, Compassion and POSITIVE ENERGY and Healing ENERGIES YOUR WAY !! THANK YOU! Tommy

  • Thanks again Tommy! I had a complete misfire at the rheumy today, so I have to wait until after March to get to another one! Unfortunately, he sounded a bit lost with my symptoms and had no answers for me. Actually, he even tried dismissing the possibility of it being an autoimmune disorder, which just seems impossible at this point. To the next one, I guess!

  • Well, color me massively disappointed. I had my rheumatologist appointment today; I explained everything from onset, to what's happening currently, to blood test results. His answer? "Well it sounds work place related, and I honestly don't know why your joints are becoming red. Your blood tests are fine and your physically showing mobility, so I can't see it being an auto-immune disease". Sigh. I sort of expected this from the first doctor, but it's still frustrating when you KNOW something is wrong, but the doctors rely on old information to "diagnose" you.

    The worst part of this is that I now have to go back to my pcp for another referral, because my curren insurance plan requires that I have one. I won't be able to do that until after March. Talk about reducing you to tears! Jeez.

  • Hi James, I'm having one of these can't sleep night's and catching up on what I've missed here. Can I suggest you 're post your last comments since seeing consultant? Your post would have moved pages and unlikely your last comments would have been noticed. Just to get some further advise, sounds horrific and it must be terrible for you. I'm lucky in the sense that my tests were all positive but reading here there are many here who went through what you are now.

    Hope your okay though, you mentioned dealing with anxiety and depression, I hope your getting all the support you can x

  • Thank you for your concern! I'm sorry for a delayed reply about this; I just recently came back from vacation so I've been trying to get things situated at home.

    I have another appointment with my primary doctor tomorrow, and i'll be letting him know about that rhuemy appointment, and what to do from here. My symptoms had subsided quite substantially while I was away, but since returning are slowly beginning to reappear. I'll definitely be making him retake blood again at least and work on getting into a new specialist.

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