Hello there. I posted here once before about 6 months ago trying to figure out what may be wrong with me.
For a little over a year now I have had severe pain and swelling in my hands, feet and knees. Sometimes my elbow, sometimes my hips, but usually just the other three. I have a hard time walking, turning doorknobs, opening a Pepsi bottle (in fact I can't without a bottle opener gadget), even holding open a magazine. It all came on very suddenly after my mother passed away.
I have been on Vioxx, Celebrex, Bextra and Mobic - all of which helped a little but not much.
It took me a while, but I finally got myself a family doc. Initially he said he thought it looked like rheumatoid arthritis (my wrists have knots on the side and one of them is turning inward), until my blood tests come back normal. (All except that my lymphocytes are high.) Then he said he thought it was fibromyalgia, but would send me to a rhuematologist.
After a little over a year of pain I finally got to see a rhuematologist today. Of course, being the big baby I am I started crying pretty much as soon as he came in the room. (I hate doctors and have been so miserably in pain for so long that I am depressed. Imagine that.) Anyway, he diagnosed me with just being crazy with maybe a little fibromyalgia. Actually told my husband he should just take me to a mental health institution for my crying spells.
My husband's jaw fell to the floor! He was livid. "Can her being depressed make knots come up on her hands?!! Can it make her feet and hands swell up?!!" The doctor just insisted he didn't see any knots and that depression could cause all sorts of problems.
So, I guess I should just be happy that I am not sick and just crazy. How come I am so upset then?
Thanks for any advice that you can offer.
Timber
Wow. It sure sounds like RA or something... Was the swelling there when you saw the doctor? DON'T GIVE UP. Find another Rheumatologist. Good luck.No, I'm not too bad swollen today. It just hurts and my hands are stiff.
I don't think I have it in me to do this again.
Thanks though.
Timber,,
I agree with SandyJ. But first, take a break. I know everything is happening so fast - too fast to comprehend. Remember, you're still the wonderful person that you were before all this. But do not even think about looking for another doctor until you feel stronger and more determined to stand up for what you know is going on with your body. Sounds like you have a super supportive husband. Then, when you feel up to it, do a little investigating into some other practitioners. You're bound to fall into the right hands. We're all rooting for you here at AI. Keep in touch. Rana
P.S. That rheumatologist should be reported for the uncaring attitude he had with you. He sounds unknowing and unprofessional!
Oh my gosh! I can't believe he actually suggested that! Good for your husband for standing up to him. I would definitely report him to the proper people in charge. We don't need that kind of uncaring, cold doctor. I hope you can find one that will listen to you and actually show some compassion.
Cris
Timber...(((hugs))). I can SO relate to you! When my son was born I had shortness of breath, chest pains, etc. I went to doctor after doctor who told me it was post-partum depression and/or anxiety due to being a first-time mom. I didn't give up and KEPT going to the doctor, despite feeling embarrassed and humiliated most of the time. I was put on xanax, referred to therapy, etc. I KNEW something was wrong. Finally, 4 months after my symptoms began, we found out I had cardiomyopathy/congestive heart failure. I could have died without treatment. I recently developed RA and am coming to terms with that. My advice to you is KEEP SEEKING help! Don't let a few doctors deter you from getting the treatment you need. NO one is going to look out for your health but YOU! If it means going to 10 different doctors until you can be heard and treated, then GO! Don't sit down and feel sorry for yourself now, this is not the time. Get ANGRY! Get moving! Just keep putting one foot in front of the other..make a move tomorrow towards good health...whether it be making a phone call to another doctor, whatever. By giving up on medical treatment, you are hurting no one but yourself. You can do this! I am with you! Feel free to email me if you want! You get out there girl and FIGHT for your health! I am behind you 100%! The other part of this.......RA can make you very exhausted. That, along with being in constant pain can lead to depression. There are so many wonderful meds out now to treat the depression too, so don't overlook that part of your health either. Love and gentle hugs, JuliahThank you for the kind words, they really mean a lot. It has been very frustrating having this sort of pain and feeling like no one understands. I am 31 and the mother of a seven year old. I have had a hysterectomy so I am also in menopause. I feel like I am 100 years old, 60 on my good day.
I do have pain medicine for my back problems, so that isn't an issue. It helps with the pain a lot, but I guess you all would understand that even with it you don't feel painfree and normal.
Until I can get up the gumption to go to another doctor what would you all suggest I do? Any herbs or vitamins I should try or any tools I could get to help me with activities?
I sometimes use a cane (just in may house cause it embarrasses me) when one of my knees or feet is really flaring. Course, it hurts my hands to hold it. (Okay, so how crazy does that sound?) I also use a little tool from Pampered Chef for opening cans, bottles and jars. This is the coolest little gadget ever and I don't know what I would do without it. It even has magnets on the back to stick to the fridge so I don't have to go looking for it. My hubby will be putting pulls on the drawers as soon as he can cause I have trouble opening my cabinet doors.
Hot baths feel good while I am in there, but of course I can't stay in a hot bath much of the time. I would love a massage, would be willing to give my pinky toe for a good hour long one, but can't afford it. I have some Biofreeze I slather on but that doesn't seem to help much.
I am still able to type, thank God, though I can hardly use my pinkie on the bad days. I have been working on a novel so if it gets where I can't type I would just be lost. Please tell me it won't get that bad.
Thanks so much for giving me a kind environemnent to ask these questions in.
Well, now from looking at some of the other threads maybe I shouldn't have asked that. Please don't flame me!
I will tell you straight up that I don't have much money so I can't buy a lot of products, no point trying to sell me anything. I guess what I am asking then is what can I do for free or for very little to relieve my pain or stop it from getting worse?
Hi latebloomers,
You won't get flamed! We ask each other for tips for products all the time- but we don't try to sell each other anything.
You can use ice to relieve pain and swelling. Frozen peas or things like that work really well. Treat like you would a sprain, covering the ice and removing every 20 min to let area return to body temp. When you're hurting take it as easy as possible. Only do what absolutely has to be done, it sounds like your husband is very supportive and 7 yr olds can be very helpful.
Don't be embarassed to use a cane if it helps you get around. Do whatever it takes. Its hard not to be upset that you need help.
Some pharmacies have items you might check out. Most of them carry door knob covers that make it much easier for you to open doors. There are a lot of inexpensive gadgets available to make life easier. You might check them out
A good place to go for help is the Arthritis Foundation website. Its very good and can be a big help.
Don't be discouraged just because 1 dr brushed you off. You'd be surprised how many of us have had that experience in the beginning. I went to 3 Rheu... before I found the one that I have had for over 20 years. They always seem to want to blame in on depression; they'd be depressed too if they hurt like you do, duh!
Keep up the fight and keep in touch. Just remember there are 170 kinds of arthritis.
Barb
((((((((((((((((((((((((((((((HON))))))))))))))))))))))))))
I am so sorry that your first visit to an rd went just terrible. I would tell your family dr. you want a second opinion immediately, with another rd. Start keeping a journal of everything you are experiencing, do some research, the libraries have some excellent books on athritis and the different types there are. Barnes and Nobles has some very good books too. Think of it this way you will learn more about this disease and what to keep an eye for, a good rd will tell you even though you may not have a sed rate, there is still possibility of ra. Remember too you may not have ra you could have another form of athritis besides ra or fibro. I kept having a problem after I was diagnosed for ra and my family dr kept telling me my sed rate was way down from the meds but i was having such terrible pain, I was sent to an rd, after 4 yrs of complaining, it was then dicovered not only did I have ra, and oa, I had psoriatic Athritis, which is not that common. what the disease is, is where 10 to 15% of the people who have psoriasis, has pa. You could have just a little area affected by psoriasis and still have pa. So that is another area you may want to check. Remember there are over 100 different types of athritis. When you do go to another rd take the journal with and show him what has been going on, you can even write down questions in your journal to ask the dr. It is important to speak up alot of times the dr is busy and won't ask the right question so you need to help him, or her out. Again I am so sorry for your pain, if there is anything I can do let me know and you can always pm me. Take care. Meme
Ps there are programs that the medicine companies have that can help you out on getting meds next to nothing or no cost you just have to contact them and let the dr know that you are on a limited bdget. there are wonderful drs. out there that really want to help their patients.
Thank you all so much. My spirits are a little higher today, trying to find a little hope again. I will check out or try everything you have suggested.
Looking back on it I am afraid the RD may have had his mind made up before he met me. My hubby agrees that he thinks the primary care physician (a very young and naive doctor who I have only seen twice) may have put that in his notes to the specialist. Seems like he was asking questions along that line from the very beginning and as I said he didn't bother to run any tests or anything at all. He also said the other doctor had suspected it was more of an emotional problem as well and I had forgotten about that until my husband reminded me of it.
I am confused and disheartened but my health is too important for me to just give up. If not else I have got to try to get better for my little girl. It may just take me a little while to figure out my next plan of action.
Latebloomers go to another doctor!! That one you saw was a real jack___!!That whole thing about it being about my mother is the wrongest part of all. He doesn't know me. I had been taking care of my Mom for 6 months watching her pain grow as the cancer ate her up. I loved my mom dearly, and I miss her very much, but I was able to let her go. The only reason I mentioned it to him is that I had read somewhere that stress can often trigger autoimmune diseases. And while I handled it as well as can be expected (I had lost my Dad five years earlier and that time was a shock), it was a stressful time.
That RD flat out told my husband "Her bloodwork was normal and you can't have RA with normal bloodwork." I thought he was wrong about that, but by that point I knew it was a lost cause.
No, I am not crazy. But I am starting to get mad.
wayney
Wayney's right. I'm like her...11 years out. Believe us; you can have it with normal blood work. What kind of idiot are you seeing?!?!?! Any good Rheumatologist will tell you the same thing. There are many factors that go into a diagnosis blood work only being a small part of it. Do your own research and you'll see plently of doctors that support that fact. Find another doctor as soon as you can. If you do infact have RA you need to start medication as soon as possiable to prevent joint damage now that can not be reversed later. If it's not RA a good Rheumatologist can determin what exactly is going on and get you on proper treatment. Good Luck girl. Don't give up!!Add me to the bunch with mostly normal bloodwork! I've also had two sets of xrays. One showed joint deterioration, then the next one didn't (which makes no sense). Tests don't show everything. I sometimes worry that it is all in my head, but my rheumatologist disagrees. Her POV is that, since even on my worst days I still go to work, still take care of 6 kids, still cook, what would be "in it for me" for my mind to just make up the symptoms...Hi Timber:
You and I must be psyhic twins! I am experiencing the exact same feelings as you. They keep throwing fibro in my face and its more than that. I mean my hands swell and hurt and my ankles and feet are a complete nuisance. I hurt and yes-- all my tests are normal.
I don't think that doctors should just rely on tests! That to me is just plain stupid. I mean, We are in our bodies we know-- we know the difference between muscle aches and swelling for goodness sakes!
Sometimes doctors can make us feel just like you described. I cry every time I go to the doctor and they do me no good. You are not alone. Take a break think about what your needs are from a doctor and then find one. I am taking a break and changing doctors-- the new rhuemy who replaced my old doctor is a JERK! And he will never see me again! HE is terrible and a jerk and he is not in my health plan. So bye bye to him!
Just hang in there!
I wish a very good, low pain day!
Elna
Second: I would find another Dr. or RD and go from there. There are many factors that go into diagnosing RA and the blood isn't 100%. It sounds as if you found a VERY CLOSED minded Dr. You just need to keep pushing forward and get what you need. You have to be as strong as possible in order to be your own advocate.
You may want to start keeping a daily calendar (blank) and record your pains, troubles, etc on a daily basis or at least write them down to present them to the Dr. This may help more than you trying to explain.
There are many on the board that it took more than one Dr. or time of going to the Dr. to be properly diagnosed.
Remember that we are all here for you unconditionally.
Hang in there... brighter days are coming.
It has really made such a difference to hear that I am not alone. I really appreciate every one of you taking the time to share with me.
When I came out of Dr. Nogood's office I told my husband I would NEVER set foot in another doctor's office again, and I really meant it. I would have rather laid down and died than go through that torture and humiliation again. (I was also terribly sore for days from the TOO hard poking and prodding that for some reason he thought didn't hurt me.)
It has taken me awhile, but I have got my gumption back. Giving up WOULD be crazy. I can't do that, my little girl and my husband (not to mention my critters) all need me too much for me to just give up on ever getting better. Without the support and advice I have received here it would have taken me a lot longer to get up the courage to start this fight all over again.
I have an appt with a new family physician for next week. Starting all over from scratch seems like the best thing to do here. Here's hoping she is a good one and that she sends me to a good rheumy this time.
Elna, I hope you find a good one too! We can make it a race to see which one of us finds a half-a** decent doc first.
Hope you all have a feel good day,
Timber
Timber...Good for you girl!!Go get'em girls! You know your body better than anybody else, no matter that they seem to try to convince you otherwise.
Keep in touch with your progress. Barb
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