In pain and clueless...advice? | Arthritis Information

 

I am a 32 year old wife and mother of 3. A few months ago, my back started hurting. Shortly after, both of my knees chimed in. They hurt so bad I dreaded standing up or bending over. No marks/bruises or swelling. But, it hurts to push the top of my knees towards the knee caps. I went to the dr who said, and I quote "in all of my years, I have never seen such crippling bilateral knee pain in someone your age." "I honestly don't know what is wrong with you, but something is definitely wrong."
So, he ordered blood work for Lupus, RA and tissue disease. Some came back a little off, and my RA factor was 20. he said all looked fine and sent me to Orthopedic Dr. 3 days before that appt, my shoulders, wrists and ankles started hurting. It hurts to even drive now because of shifting the car into gear, and pain from sitting, etc in the back/knees. Went to Ortho, He says same thing, "i don't know" and ran the same tests. I go back for the results Tuesday, but was wondering if this sounds like any of you at the beginning?? My gma was diagnosed with RA when she was 27 and I saw what it did to her. They gave me prednisone 10mg and told me I could take two if one didn't help. So that seems to be helping a little bit, but not all the way, especially where the pain is the worst. Sorry for the long post, just looking for support, advice, etc.Sorry, I also forgot to add I have a lot of popping and cracking in my joints and tons of fatigue. Not sure if those are symptoms, but wanted to throw that out there.I'm so sorry that you are feeling this way.  I'm glad you dr. was quick to refer you to someone else.  An ortho is a good start, but you really need to see a rheumatologist.  You will quickly find out the bloodwork is only a piece of the puzzle.  It very often does not lead to a diagnosis-just gives a clue to the dr as to what is going on.

Thank you, I will definitely let you know. I am definitely nervous, esepecially since no one seems to have any answers. At this point, I just want a diagnosis so I can get treatment. Sucks that it hurts just to pick up my 6mth old baby girl. Does it sound symtomatic of RA or do you think i'm way off base here? In my case the pain and inflammation moved the other way.  First in fingers/toes, then wrists/ankles, then knees/elbows.  For a little while it seemed like my jaw was hurting, and the matchup of the teeth with mouth closed didn't align in the usual fashion, but I never had other pains like in the back or shoulders.  One knee popped for a few months, but that is gone now.  This progression probably happened over months, and may even years.  For a while I just wrote it off to "need more exercise", or just getting old.

It is much better now, have been on the medications for about 1.5 months.  I am taking some combination of Methotrexate and Actemra;  don't know exactly since I am in a "blind" drug trial but whatever the actual meds are, they sure seem to be working.  For a while I'd say I was 90% annoyed or affected by this stuff, and 10% at ease.  Now it is quite the opposite, the RA affects me perhaps 10% or less of the day, or at least is on my mind very little at this point  So the good news is there are treatments out there that do work for RA.

Roland
Just thought of another thing.  My hands were swollen very badly, same with the feet and especially the ankles.  None of my shoes even were close to fitting anymore.  When it got better, I recall the good news;  I went to my kids and said:  "look, we can see some of the tendons and blood vessels on the back of my hands again!".

Also, I suggest to take a read through the stuff at this site:  http://rawarrior.com/do-i-have-rheumatoid-arthritis/

Roland
Ramen2010-10-15 11:48:10Your general explanation of things does sound like RA but then again I am no Doc.

Like you I got so bad that driving the car was near impossible.
I was in massive amounts of pain right through out my body.

Roland has given you are good link to follow through on.

jplaw,

I don’t think the popping and cracking are symptoms or has anything to do with any of the autoimmune diseases but, I could be wrong.  I’ve done a lot of research on the internet and I haven’t seen this as being a symptom.  Although, I have had popping and cracking in my joints since I was a teenager.  I have recently experienced pain and just being uncomfortable in the car or just sitting in a chair.  If I squat down to play with my niece or grab something off the bottom shelf at the store it’s hard for me to stand back up.  My knees hurt and I feel like there is not strength to push myself up and my leg muscles hurt like I’ve worked out for 24 hours straight.  I agree with rocckyd, you should definitely see a rheumatologist.  I don’t think you’re way off base.  It definitely sounds like you have something going on with the autoimmune system.

Here’s a little bit about me.

I am 39 years old, married and a mother of an 18 and 21 year old.  I started seeing a rheumatologist 2 years ago after I was telling my aunt (who had been seeing a rheumatologist and is believed to have Rheumatoid Arthritis & Lupus) about some of my issues.  She convinced me that I needed to see a Rheumatologist.  Anyway, 2 years and I STILL don't have a diagnosis.  I do know that they think it is one or more of the following:  Lupus, Rheumatoid Arthritis, Fibromyalgia, Scleroderma or Ankylosing Spondolitis, none of which sound like any fun to me.  I just don’t show enough signs of any one disease in order to be diagnosed.  I understand how frustrating it is.  I just went through a long bout of depression due to the stress of not knowing and the fatigue.  It all started for me at least 4 years ago.  First with short bouts of fatigue and hip pain when I would try to get up off of the couch after sitting and watching a 30 minute TV show.  About a year and a half after that I had a major flare.  I woke up one morning to get ready for work and my entire body hurt so bad that I couldn't even force myself to roll out of bed let alone sit up or stand up.  Then I noticed that I was having a difficult time holding my arms up to dry my hair at times.  They just felt so heavy and would hurt like I’d been working out for hours.  That usually last several days at a time.  I've been on Plaquenil for 2 years now which has seemed to help tremendously until recently.  I just had a flare that put me in bed for a couple of days.  Extreme fatigue (I surprise my husband by how much I can sleep) and major body aches.  This time the pain started with extremely cold hands that ached in the fingers, wrists and entire hand.  The next day the add in the upper and lower arms, ankles, feet and toes.  A couple days later throw in the shoulders and lower back and hips.  There were several nights that my body was so stiff that I woke myself up moaning loudly when I tried to roll over and get comfortable. 

At the beginning of the last flare I went to the General Internist because my supervisor insisted that I see a dr. because she could see how much pain I was in.  Not only were my hands cold and achy but my fingertips and nail beds were turning white.  I was diagnosed with Raynaud’s Phenomenon which, in my case, is caused from and underlying condition.  I know this because blood work was ordered at my very first rheum appt 2 years ago and my rheumatoid factor is almost 300…no, that is not a mistake…yes, I really meant to put 300.  At that time they took x-rays of hands, feet, wrists, ankles and hips.  They also did an EKG, Pulmonary Function test and Barium Swallow to look for damage in the joints, and the heart and lungs.  Fortunately, all tests were clean except the rheumatoid factor.  I go for blood work and see the rheumy every 6 months.  I have eye exams every 6 months as well due to the Plaquenil.  I was taking Paxil for the depression and anxiety but I talked my family practitioner into changing it because I felt like it wasn’t working anymore.  He switched me over to Cymbalta last Thursday.  He noticed that I was rubbing my upper and lower arms while I was sitting on the table and he said that the Cymbalta should help with the fibromyalgia-type pain I was having as well as the depression and anxiety.  Well, I definitely feel better today!  The past few days I woke up in the morning and actually feel a little refreshed.  I haven’t overslept in 3 days and I haven’t had the urge to call off work (so I could sleep) due to exhaustion.  I pray that it continues to work and that it gets even a little better than this. 

Well, I go back to the rheumy on Nov. 15^th and I’m hoping for a diagnosis or at least that we may be a little closer to one.  I have been keeping a diary of how I feel every day, what aches and pains I have and anything weird that may happen such as a flutter in my chest, bursitis, etc.  Even things that I don’t think could have anything to do with a disease.  I keep track of it just in case. 

I hope that sharing this information has helped you in some way.  Please keep us posted and I will do the same after my appointment on Nov 15th.

I really feel for you, Jennifer. Thanks everyone for your replies. I am hoping I get some answers on Tuesday, though not very optimistic as everyone seems clueless thus far. Has anyone taken prednisone and had it help some of the joints but not all?? When I take it, my knees don't hurt as bad, but my back and shoulders hurt so bad I cringe when I move them. Just wondering or if the pain comes and goes. Sorry for all of the questions, I am just trying to understand all of this. When I woke up this morning, my hands didn't hurt but were very stiff, but fine now. Ugh, I hate feeling so clueless. I feel so whiny and lost right now. {{HUGS}} I agree with the others that it does sound like one of the autoimmune arthritic diseases, especially with your grandmother having had it.  Do you have a rheumatologist appointment yet?  It is paramount that you get to a rheumatologist.  There are better days ahead, once you can get on the appropriate medications.  Please check back in and let us know how you're doing, and let us know when you get an RD appointment. 
Thanks, I will definitely keep you all posted. I have a follow up appt with the Ortho DR Tuesday for my lab results. He mentioned a RD but he was also very cold so I didn't say anything. So we will see.My RA first started in my hands/wrists.  Tons of pain and great difficulty driving.  That was in 2004.  Eventually the pain went away with anti-inflammation medicine and pain pills.  However, I also seemed to have other issues - difficulty concentrating, not finishing things I started. [QUOTE=jplaw0821]Thanks, I will definitely keep you all posted. I have a follow up appt with the Ortho DR Tuesday for my lab results. He mentioned a RD but he was also very cold so I didn't say anything. So we will see.[/QUOTE]

Very cold?  Sounds like a jerk.  Please keep in mind that orthos really aren't equipped to treat autoimmune disease.  You really need to see a rheumatologist.
He was definitely a jerk, wouldn't even listen to me. I did not know that, thank you. I will check into getting an appt. Today hasn't been too bad, had a rough morning with my left foot and top of hands??? But overall, pretty good. I am so sorry to all of you who have this so much worse than me. I can not imagine and that scares me.jp-

Hopefully you will figure out what's wrong on Tuesday.   If you have RA don't depsair. There a many new effective treatments since your gma was diagnosed so do not look to her as an indication of you future. My gma had RA and was bedridden for years with nothing but prednisone to keep her comfortable. I've had some form of RA since I was about 27 (I am now 45) and I am in better physical shape than most people in their 20's thanks to the new biologics and plenty of exercise.Thanks. I don't have an RA, but will definitely be asking. Just out of curiosity, are there days where it doesn't hurt so bad? I woke up this morning, and though I can still feel some aches, I have had no problems. Makes me wonder if it's going away or was nothing from the start.. Update. I just called the Ortho office to make sure they received my lab work for tomorrow's appt. She said it all came back normal, except the RA Factor, which was blacked out so she had to request a copy. But, she said if all the others came back normal, then this one will too. So...I guess it isn't RA and i'm back to square one with no answers. :([QUOTE=jplaw0821]... She said it all came back normal, except the RA Factor, which was blacked out so she had to request a copy. But, she said if all the others came back normal, then this one will too. So...I guess it isn't RA and i'm back to square one with no answers. :([/QUOTE] Green~Tara2010-10-19 08:09:11Hey Tara,

Update from my appt today. By blacked out she meant the fax was too dark to read on that test. The dr said my RH factor was normal. He said that subjectively, he believes I have seronegative rh and has referred me to a rheumatologist. Yesterday was great...today, not so much. My knee pain is back with a vengeance. They said it could take over a month to be seen by the rheumatologist, so that sucks I have to deal with this that long. Is it true that with seronegative, it won't be as bad as those who test positive for the rh factor?Thank goodness, I'm glad you're seeing a rheumie.  Take it one step at a time.  I don't know answers about sero negative being less bad but I do wish you all the best. Me too, I couldn't even sweep today because of my shoulder. Blah, lol. Anyway, I actually got an appt for next Wednesday, so that makes me feel better. Now to just get past the dreadful move this weekend, lol.Wed-like a week from tomorrow?  That would be great! Thanks for the input, it helps to gain understanding, i'm so confused. Do any of you get a lot of chest pains (feels like a balloon in your chest)? I'm on zoloft for anxiety, but lately it's not working on my chest and i've never had them like this. It doesn't really hurt persay, just feels almost 1/2 the size or something...eek, idk how to explain that one.jplaw,