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HELP! New type of pain.

Aug 24, 2015 12:21 AM

I've been inactive on here for quite a few months but after the pain I've had the past few days I knew I needed to talk to some folks that might understand...

I've gotten a fibro diagnosis, I've been living with it, I've cone to understand how it makes me feel very well. The past few days though, I've discovered a new level of pain. My fibro pain was almost always in my muscles, very rarely in my joint areas. The pain from yesterday and today has been ONLY in my joints and at least one was swollen, which is totally new.

I'm scared what this might be, but can you guys chime in since it will be at least two weeks before my doc can see me?

Aug 24, 2015 7:25 AM

Hi mountain girl, I'm sorry you are dealing with a new symptom. . Its scary for sure.

First let me say fibro does not cause swelling. I have a work friend who's (ex) rheumatologist telling her that her hand pain and swelling was due to her fibro so I encouraged her to go see my rhemy because that made no sense. She is in the process of getting tests done. In the end they might not find anything more right now but at least someone is checking. She already has 1 autoimmune disease (stomach) and many times you can develop more of them.

I was originally diagnosed with fibro because no one could figure out what was causing my pain ...for me I knew that didn't alone make sense but because of the fibro dx my PC sent me to a rheumatologist. . She took one look at me and pretty much decided it was Rheumatoid Athritis (RA). The problem was I had been tested with the basic tests and it kept coming back negative. She did tests the other docs didn't do and it was confirmed by my second visit. 20% of the RA population test negative and that is 20% of the ones the catch.

I still have fibro but its secondary and for me I think its a biproduct of the RA and has been a lot less active since starting treatment for the RA.

Do you see a rheumatologist for your fibromyalgia? I would definitely tell your doctors about the joint pain and swelling. Keep track of it till your next visit.

Best wishes.

Aug 24, 2015 7:39 AM

Mountaingirl, I am so sorry that you are in such horrible pain. I have a Fibro diagnosis along with several other autoimmune issues. A couple of weeks ago, I had a similar experience as you are having and ALL of my joints were killing me. I had swelling in several however I do have arthritis. My rheumatologist recently ran blood work to determine if I have RA because my Dad's brother had it very badly. I should have the results soon. I hope that you get the answers you need but Linda is correct in that Fibro itself does not cause swelling. I will keep you in my prayers and know that we are all here for you. 🙏🏻🌻

Aug 24, 2015 9:22 AM

Mountaingirl, You are not alone. I also have fibro, but over the past few weeks I've noticed swelling and pain in various joints. I have osteoarthritis, so that explains my stiffness, but not the swelling because my rheumy doc said OA shouldn't cause it. There are multiple family members with RA it my tests keep coming back negative. I also have hypothyroidism and sjogrens. As Linda explained, once you have 1 autoimmune disease you can develop more. Go see a rheumatologist as soon as you can. You're in my thoughts and prayers. 🙏🌼

Aug 24, 2015 9:35 AM

You know, it's funny (not haha but strange) I've been diagnosed with Fibro, I have hypothyroidism because they removed my thyroid due to a diagnosis of grave's disease. Is there a link between this things and Sjogrens? How do they test for that? Every now and again I get sores in my mouth and always have a bad taste. I also tend to have dry eyes and dry mouth (which I attributed to the pain meds). I'm wondering if I should get tested and find out. Ugh... Just what I need, another diagnosis!! LOL!! Guess it's better to know though. I am very tired today and am going to see my best friend over at her daughter's house because she's there watching her dog. I just know that once I sit down and get as comfy as I can for me, I'm going to start to nod off. It bothers me because she is in a bad way today and is missing her cousin and Sister and what good am I if I go there and fall asleep?!? I'll just have to do my best. I hope everyone has a peaceful and light pain day. 🙏🏻🌻

Aug 24, 2015 9:56 AM

AlwayZ, it's not a bad idea to get tested. They did a biopsy on my inner cheek. They should take 3-5 areas to test, and it will hurt even into your teeth and ears if it's like mine, but only a day or two. Since my diagnosis my throat even gets so dry I have to swallow water before I can talk. My nasal passages started so dry that i get nosebleeds (a symptom). My skin is extra dry and flaky. But before the dx I was in extreme pain all over. The Plaquenil has improved even my fibro flares. 🙏🌼

Aug 24, 2015 11:33 AM

Hi Alwayz - do you have sjogrens? I believe that can cause dry and mouth. I was dealing with horrible mouth sores, dry mouth, sore gums for over a year.

After doing some research I found out that certain types of medications for autoimmune diseases can cause Lupus (which is another AI) like symptoms so I had my doc test me for Lupus just to be on the safe side. Embrel was one of those medications and by that time I had been on it for 4 years. About 7 months ago I started orencia and the mouth problems including the sores cleared right up.

Aug 24, 2015 11:34 AM

Im grateful cuz man those mouth sores are so painful!

Aug 24, 2015 12:08 PM

Wow Linda. I wish mine has been meds, but on the flip side at least my sjogrens med is helping the fibro too. I had a large amount of white scaly tissue all over my mouth, along with very tiny pin sized blisters. The biopsy came back as sjogrens and yeast. They're blaming my asthma inhaler for the yeast so I get to use Mycelex tabs all day. I've never had fever blisters but I thought that's what my bumps were. The doc said they were much too tiny and too many of them to be fever blisters and that's why she ordered the biopsy. Sad thing is, even with the Plaquenil I still get the bumps. Small price to pay I guess. 🙏🌼

Aug 24, 2015 9:02 PM

The pain is even worse today, I almost broke down and called a friend to take me I to the ER. Instead I sent the kids to my mom's, slathered the most painful joints with some cream and slept. When I woke up the pain was still there but at least the anxiety had gone down.

I talked to a few other people and they mentioned RA too, so now I'm even more worried than I was before. I already have endometriosis, along with my fibro, I really am not sure I can handle a third pain condition...

Aug 24, 2015 9:37 PM

If you do have RA, or another autoimmune disease, like sjogrens of lupus, once you get on meds you may find a big decrease in your all over pain. That happened to me in March-May. I was hurting much worse than fibro has ever caused, my mouth, nose, eyes & throat were extremely dry, and I felt exhausted every day, no matter how much I slept and napped. I was dx with Sjogrens & hypothyroidism, and after being on the meds for both my pain is the lowest ever, daily avg 3-4. 🙏🌼

Aug 25, 2015 7:56 AM

Hi mountaingirl, I completely understand the worry of another possible dx. I was a basket case for years before I found out what was wrong with me not knowing what it was. Then I was a whole new kinda basket case after I found out what it was. I joined a support group right after I found out.

When I think about how crazy, scared and anxious I was over it all back then I have to wonder if they thought I was a nut case lol In all seriousness though they really helped me get through it and we will help you get through whatever it may or may not be.

It did help me knowing as opposed to not knowing. At least if you know you can work on making it better. Its harder to do that when you don't have a starting point.

It took a few years but as of today I seemed to have found the right medication. (And I never thought I would be able to say that) I feel better than I have in almost 8 years. It only took so long because my RA was really bad by the time they figured it out.

It might not be anything like that at all but If it happened to be then you would be way ahead of the game. Catching it early is the best thing. ((Hugs)))

Aug 25, 2015 11:08 AM

That's it, I give... Going to the ER because I can't take this anymore. The new pain has caused my normal fibro to flare now too.

Tried calling my normal doc to be seen but they don't have anything for today and I can't go tomorrow because my kids are out of school tomorrow. I need to be more functional than being laid up on the couch or in bed.

Fingers crossed I get some kind of answers and/or relief.

Aug 25, 2015 1:57 PM

I hear ya.. its really hard to live ur life and do what you need to going through this kind of thing. I've had to do the same many times unfortunatelty. Good luck! Hope you can get some relief soon.

Aug 25, 2015 4:12 PM

Results of the ER trip: narcotics to get me through till my next appointment and orders to have rheumatoid factors checked.

Hopefully the meds help at least a little because it's really difficult to cook and generally tend to the kids if I can't move without something screaming at me in pain...

As for the blood work, can't say I'm terribly surprised. I know RA and fibro often go hand in hand but I was really hoping to only be saddled with what I've already got :/.

Aug 25, 2015 4:25 PM

Mountaingirl, I can sure understand your discouragement in getting yet another diagnosis. You start thinking, OMG, what's next? How many more of these diseases can I come down with. RA runs in my family. My Uncle (My Dad's Brother) had such a severe case, he had his knees and shoulders replaced and also had to have several other surgical interventions to help him with the deterioration. I remember looking at his hands when I was a young girl and they were all gnarled with very large joints. They were scary to me at the time. I pray that with the help of the doctors you are able to keep both the disease and its pain at a manageable level. You'll be in my prayers. 🌻🙏🏻

Aug 25, 2015 4:25 PM

I completely understand .. one thing I was grateful for when I started having problems on a daily basis was that my kids were old enough to take care of themselves. . I don't what would have done then. My heart goes out to you.

I'm so glad they gave you something to help with the pain. On a side note and I may have already mentioned this but if your RA factor comes back fine that really doesn't mean a whole lot. If the joint pain and swelling continue regardless of the test results ask to be sent to a rheumatologist (not sure if u already see one) I wished I had.

Aug 25, 2015 4:46 PM

Yep, that's a tough position to be in. That kind of pain is already making you feel like crying. I'm sorry and I wish you the very best in feeling better.

Aug 25, 2015 7:31 PM

Mountaingirl, Im glad you're at least going to have some relief. I totally understand the "not another problem!". I just take it one day at a time. Hugs & prayers 🙏🌼

Aug 28, 2015 2:49 PM

So I've given it a couple days, hoping the norco from the ER would help calm whatever is causing this flare but I've had no luck. If anything, it's getting worse!. I want nothing more that to curl up in a ball and sleep until I see my doc on the 2nd but that's just not possible. Goodness knows I'm tired enough to just sleep straight on through, but the kids and critters need tending and we can't afford a babysitter :/. I'm not sure how much longer I can handle this without losing my mind...

Aug 31, 2015 10:29 AM

I'm so sorry you're hurting that based. I haven't been on my tablet much the past few days, so I'm just seeing this. I hope you were able to get some rest and some relief over the weekend. Sending e-hugs... And a prayer on your behalf! I old the doc can help when you are them! 🙏🌼

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