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When did you first notice symtoms of RA and what were they like?
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Bijoubear posted:
I am trying to get a handle on what is wrong with me. I am a veteran and without med insurance so I go to the VA hospital for care. It takes months sometimes to get a treatment plan or even a diagnosis.
I'm complaining of joint stiffness in both hands, feet and wrists. I also have pain in my neck and jaw (where it is gettng increasingly difficult to open my mouth to eat). My bones are creaking and popping all the time in other joints as well..knees, ankles. I also experience pain when walking and pain and stiffness in my elbows. There is swelling present in ankles, feet and hands but it is mild compared to the stiffness and the pictures that I've seen online. I also feel swellling in the balls of my feet. I have mentioned to my husband that it feels almost like walking on little balloons.
The doctor first noticed that bloodwork showed a high RH factor. Then did exrays on hands and feet and noted mild abnormalities..that do not require action at this time (whatever that means) but was given no explanation for the pain. The only thing was that they have ruled out lupus. OKay...so I'm still in the dark.
No one of course wants to hear that they have RA or any other disease but I would like answers.
I am a hair designer and it is affecting my ability to work, I am very concerned. I do feel tired alot, but also have had some major stressors in my life which have caused me to feel somewhat depressed and I know that fatique come with that..
Any advice or what I can do from here?
Just curious that since it seems to be a prgressive disease..what are some of the earlier signs or symtoms that you have experienced?
Reply
 
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DIYSTER responded:
I had many of the symptoms you are experiencing. Though joint locations vary from person to person, usually several joints are involved. Another early symptom was my fingers turning white and numb when it was cold. It didn't take much coldness for it to happen either. Turned out to be Reynaud's Syndrome which is common with RA and other auto-immune diseases.

A good Rheumatologist can give you a real diagnosis. If the bloodwork showed abnormalities consistent with RA and you are experiencing classic RA symptoms then it would seem you should be able to be referred to a Rheumatologist. And yes, you are correct, RA is a progressive disease and if left untreated can cause far more than joint damage so I hope you are able to get a proper diagnosis and treatment. Best of luck to you!!
 
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Bijoubear replied to DIYSTER's response:
Thank you for your response...stilll searching and waiting to have and MRI. The VA is taking thier sweet time...(bogged down with so many people unemployed) So, I am now in search of a civilian Rheumatologist in my area.
I also feel widespread pain in muscles is this possibly a symptom?
Someone told me maybe Fibromyalgia but that does not explain joint pain in hands, elbows, wrists and feet
Oh I don't know, of course I'm not looking for a diagnosis from anyone on here. I will head to a Rheumatolgist. It's just that the Doctors I have been going to seem to brush me off.
 
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DIYSTER replied to Bijoubear's response:
To answer your question about widespread pain in muscles, it is not uncommon for people with an auto immune disease to have Fibromyalgia. I have it (along with RA, Sjogren's Syndrome, Reynaud's Syndrome and digestive tract issues)and so does a good friend of mine who has Lupus.

I hear you about the doctor/patient thing. It's tough enough to be saddled with the crap we have - being treated that way doesn't help. I sure hope you get in to see a Rheummy soon! And hopefully a GOOD one! :-)
 
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LJS13 responded:
Those symptoms are very similar to how I started 6 years ago. My symptoms began with swelling of joints and daily stiffness in my hands and feet. I was first diagnosed with Lupus because my RA factors were not high enough. 5 Years later and 2 children I now have permanent damage in 2 of my toes on my left foot and RA. I have a great rheumatologist and we are working to eliminate all pain together. Inflammation disorders are difficult to find effective treatments for, but hopefully it gets better. Nobody likes being diagnosed with RA at the age of 26, but at least knowing means a treatment. Good luck and I wish you all the best.
 
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roxstua responded:
Whatever you do, get to the good treatments fast. Studies have shown that aggressive biologics early on prevent permanent damage and that has been my experience. Don't let the doctors drag you through years of ineffective treatments before they start you on the good stuff (Enbrel, Humira etc.) In my opinion, Enbrel is a miracle drug. At one point, I was in bed with my RA because every joint in my body was inflamed, swollen and frozen and I could not even get to the bathroom without help. You do not want to go there. I finally got rid of all the steroids(don't do steroids either...I'm still paying for that mistake) and methotrexate and got on the Enbrel. I am now in the gym an hr a day and am doing very well. I have to wonder why I was forced to endure all those other poisons before I was given what they knew all along would work. Also, are you in contact with chemicals in your work? I was a chemistry teacher and figured out after many flares that chemical contact set me up for a flare every time. It is no coincidence that the majority of RA patients are women...we are the ones using the chemicals in the house...bleach etc. I hope you can motivate your doctors to get you what you really need. I am an Army brat and am familiar with what you may be dealing with. By the way...Thank-you for serving our country...I appreciate what you have done for us.
Been there.
 
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sotang replied to roxstua's response:
Dear Friend, I badly need help... my 6 yesrs old daughter is sick from two years and doctor diagnost it is JRA and advising us to take Tocillazumab it is a biological medicine given in intervien. am in delima kindly help it is worth I will go for it. Regards Basanthsotang@gmail.com Ph.919866778014
 
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alamogordo responded:
I belive that I may be able to help you.
First of all you need to start watching "Know the Cause", you can google it and watch it on a computer. Second you will need to change you diet to what is called a Phase One Diet or you could call it a non-inflammatory diet. You will also need to start drinking as much water as 8 - 10 glasses per day. Diet will consist of fruit, veggies, seeds, nuts ( not peanuts, or pistacheos) salmon, trout, sardines, coconut milk, hemp milk, almond milk , no corn products, no corn fed meat , no dairy, no grains.
Exercise , stretch, biking, walking. In other words exercise every day. Get plenty of rest. Supplements that are very good include Krill oil, Tumeric, Glucosemine, good multi vitamin, mega dose 1000mg of vitamin c, vitamin e , L-lyseine, probilotic, reccomment Dr. Ohiras.
Two other suggestions include using a 2 spoon full of apple cider vinegar in 8 oz of water with a shot of lemon juice twice per day. Also if your bones are cracking try CAL MAX. You can google it and order it online. These supplements will take some time. But stick with the change of diet. If you want to see a doctor ask for the drugs Nystatin, Diflecon. They are both anti fungal drugs , one is for your blood system and one is for you stomach, I have not done this as of yet.
I can only speak for myself when I say what you wrote above in your letter was word for word what I went through. I work my diet everyday but make mistakes. It has been over three years since my first flare up. I have basically resumed normal activity but take the listed supplements, stay on Phase one diet. If you have any questions about this please email me at mahoney1957@yahoo.com and we can discuss. You can live with this but it will take a change of life style on your part. Other wise doctors can prescribe numerous drugs.

v/r
Pat Mahoney
 
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Okiekel responded:
Bijoubear,

I feel your pain. Is your pain/stifness afecting the same joints on the opposite side? If, you say yes...chances are you have RA. Don't be scared, talk with your primary and get a referral to a good Rheummy ( I like saying this better, thanx Diyster). Getting diagnosed early on is your best bet, that and having a good RA doctor.

A little backstory about me;
I seem to be a lone wolf when it comes to RA.....how is that you ask...I am a 34yo male and had many of the symptoms of someone who had RA for years when I was diagnosed 6 years ago. The first thing that alerted my primary were the development of small, under the skin bumps (RA nodules) on the underside of a majority of my toes and an extremely high white blood cell count. I had extreme morning and evening stiffness, my knees were swollen (Bursitus), extreme pain (to the point of tears) and the dreaded fatigue. I was referred to a Rheummy (who happened to be a quack) who confirmed my primary's suspicion. I had RA, and boy did the numbers show it. Numbers don't really matter that much when testing for RA, but my rF (rheumatoid factor) was around 1,400. I switched RA doctors two years ago and my new doc is....well he is my god send. He has done more in the last two years than my old one did in 4 years. However, we can not get my rF count to go below 700. It seems I doomed to forever have a case that is not responsive to meds. I am on Enbrel an Methotrexate injections along with some pills now. I am looking into the IV drug treatments now. And, I have to say....I am pretty scared about this avenue.

Are there any men with RA on here or chat groups centered around men? I really feel alone, as guys are not as likely to develope RA and I am the only one in my famly (that we know of) who has been diagnosed with it. I do have a really close girl-friend from high school who has RA and Lupus, so we lean on each other when it arises.

I wish you the best of luck, Bijoubear. Find the right doctor and start treatment ASAP. Thanks for reading my ramble, it feels good to talk about it with someone other than partner, fam and docs.

Peace Out,
Kel
 
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bunnywuss responded:
Go to a rheumotologist who will prescribe Rxs for that help with the swelling, pain and progression of the disease. Early treatment is very important. I have been on meds for 3 years now. I have to adjust my dosage, add new meds (or decrease) when my symptoms flare or decrease. Find a doc who understands your pain. I wait an hour sometimes for my doc but I will never change because he understand what I'm going through. I'm 55 years old now and am an avid exerciser. Good luck and push for treatment, it does help but it seems to always be a roller coaster with the symptoms.
 
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3collies responded:
I am a 57 year old female vet and was diagnosed with RA about two years ago with much the same symptoms that you have. I have received excellent care at our local VA hospital and have been referred to the Portland, Oregon VA hospital to see a rheumatologist. Just like in the service you have to go through the chain of command and be proactive. If your PCP was the only Doctor that you saw, you can request to see an RA specialist. Be persistent. If you don't get the referral, go to the patient advocate and share your concerns with him/her. There is a protocol for treatment that can take years. No two people react the same to treatment. It has taken me two years to get to a point where I feel almost human again.
I was allergic to the first 3 drug treatments and the 4th just didn't work. I am now on disability and getting Orecia infusions and the rest combined with the medications is working.
I probably had RA synptoms for several years before I sought treatment (thinking it was old age creeping up on me). I wish that I had gotten help sooner.
Keep a pain journal and request that referral. Take a list of questions with you to every visit. Be vigilent and good luck!
 
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lindalee1948 replied to Bijoubear's response:
I have had RA for about 5 years or so now. Fortunately for me, my case is not the worst, and seems to be well controlled with methotrexate, which helps keeps the disfiguring down and the pain suppressed. This travels around from one joint to another.
About 3 months ago I was also diagnosed with Fibromyalgia, which I feel I have had for quite a while. This is affecting the muscles in my body, not my joints. It moves around even more and often causes muscles spasms in my shoulder and neck (which also has osteoarthritis), and my lower back, or sometimes an arm or leg just aches. I take Cymbalta now - 60 mg. and my pain and spasms have decreased. But the thing that has helped the most with fibro is Malic Acid. My goodness, the difference is dramatic. I get them at the health food/vitamin store and take 2 in the am and 2 in the pm. If you do this religiously, the difference is astounding..
Point being, yes, you can have both at once and often DO have more than one autoimmune disease. You really need to see a Rheumatologist immediately so they can start treating this. You won't get the same kind of help and medication from anyone else. And all the meds take a while to start working. Go.
I'll be interested in hearing how it goes.

Linda
 
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knittingnana replied to roxstua's response:
I have been on Enbrel for 2 months now and I,m still waiting to feel better.I know when I was on Remicade(which I was allergic to)it took awhile.It took Orencia 3 m0s. and then I ended up with pnuemonia for 8 wks.and ultimately rhuematoid lungs. I'm not saying the Orencia caused the problem but I was taken off of that and arava also.My Prednisone was increased.I was put on 02 in Feb.I don,t need it any longer but the Dr. hasen't dc'd yet in case I might need it.I changed Rhuematologists and was tested for allergies to Enbrel before going on it.All I know is I am in alot of pain.The first trip to the B.R. in the A.M is very painful.My question is.How long after starting the Enbrel should I start feeling terrific?


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