Newbie....looking for friends who understand

I originally posted this on the RA forum.....but basically all I know that I have , for sure, right now is chronic pain.....Where to start......well...in 2007 I slipped on ice at work, I did not fall but I twisted hard and weird and hurt my lower back. Long story short...I was dealing with workman's comp docs who could really care less and the only real diagnosis I got was a non-specific problem at L5-S1. I basically got released with no follow up after 2 months off work and was told it would get better on it's own. It never did and I was afraid of losing my job, and thinking that maybe it hurt because I had been off work for a while, so I kept it to myself and suffered through with vicodin. Well, the job fired me anyway and now 3 years later I am suffering worse! I have lower back pain all the time, when it is at the best it gets, it is still about a 3. I have pain that comes and goes in my hips, rear, thighs, knees, feet, neck, shoulders and head! I have nerve stuff going on all the time....it feels like I have spiders crawling all over my legs and muscle twitches. I am now on MS-contin and cymbalta. Prior to getting hurt, I worked double shifts as a waitress at a busy restaurant and worked as a finisher for a home builder where I was on my feet on concrete for ten hours a day! Now I can not stand for 1 hour....or sit or lay down without pain! So, this has been my life for 3+ years and then 2 weeks ago.....bam....got hit with something new!! It was a Thursday morning at around 2:30 am...I woke up hurting which is nothing really new but this was different! I also felt like I was running a very high fever. I put sweats on and crawled back under the blankets and I was shivering all over. This is very different for me because I usually get very hot when I sleep and I was freezing! I was able to go back to sleep but figured I was going to wake up very sick. I woke up again at 5:00 am and did not feel sick really, other then every single joint in my body hurt so bad I wanted to cry! I have only had actual "joint" pain on rare occasions. And I had a terrible earache! I figured it was the ear infection that caused the fever at 2:00 am, but I had no fever at that time. I tried putting peroxide in my ear but I got no results....it would not go into my ear. My wrists, hands and fingers hurt really bad and were swollen. My knees were killing me, my feet hurt and my neck and shoulders were so stiff. I also had a headache. The MS-contin was not touching any of this pain!! I finally decided to go to doc on Friday because the earache was unbearable and the joint pain and swelling was not improving either. I also had a weird lump on the top of my arm above my left wrist. When I got there the doc looked in my ear and said, to my surprise, "there is no infection, your ear isn't even slightly red." She discussed the possibility of TMJ and was a little worried about polymyalgia rhuematica. Because I do not have insurance right now, she decided the most cost efficient thing to do was a SED rate. I had not had one since 2006, when my rate was 11. Her concern at the time was the polymyalgia and she said if it was that my SED rate would be sky high. She gave me a steroid shot and some oral steroids and said let see what the SED rate shows. She called to tell me the SED rate was moderate, that it was 53, but she felt better about it not being polymyalgia. So I was told to take the steroids and we would go from there. Well it took about 3 days but I finally felt better.....well better from that and was just back to my "normal" other pain. Now I have tapered off and will take my last steroid today and I am scared to death!!! I am starting to get a little achy, the lump above my wrist is coming back and I just have a general sense of doom! Also, I forgot to say I have been totally exhausted. I don't sleep for long periods at a time because I hurt, but I feel like I could sleep all the time! I am looking for some answers because it seems like my doc was so concerned about the polymyalgia she was not looking for other things. My sister has belonged to this forum for a while....well the fibro and the migraine. I have spent a lot of time here reading, mostly in the chronic pain until this last episode then I came to the RA forum. Can some of you share what your flares are like, or your first flare that brought on your diagnosis. Also what is a "normal" SED rate for RA? I am just looking for some help.....thanks for reading! It is nice to have people who understand to vent to! Bless you all on your personal pain journeys!

Hello,
Thank you for responding...I feel so lost! Having a bad pain day today! I can certainly relate to the pressure affecting the pain. I started putting that together a couple of years ago and about 9 times out if 10 when my back is really bad, the pressure is low or falling! I have read a lot about fibro also, my sister has it. She is the one who brought me to this forum. My sister is "damouthy1" and has fibro and migraines. She lives with me which is a blessing because we have each other to lean on! I guess I was kind of leaning away from the fibro and towards the RA because of the SED rate, the inflammation and the "lack of" pain at the fibro trigger points. The bad "earache", which was actually pain and inflammation in my jaw joint, was also a symptom of RA. I have no insurance right now and I am so broke! I just want to know what is wrong with me!! I am feeling so lousy today and I am starting to panic because I am now done with the steroids!! And of course the depression feels like it is consuming me! Thank you again and bless you! Take care of you!

antbuggey

Welcome to Healing Well Chronic Pain Forum, you know we are not Docs here and we cannot fix or diagnose your problems, but we all have something in common, and that is Chronic Pain, we all know what it is like to live and exist with CP, so when you come here to this forum, you can be assured that you are not alone in dealing with CP, and I think, and I hope that you will find the people on this forum to be the most caring, and supportive, and compassionate people that you will find anywhere on the internet! I know that I certainly think that they are! I consider everyone "Family" to me! I hope that you will stick around and post and also join our "family"! And even though we cannot fix or diagnose you or give you medical advice, we can give you our ears and listen to you, and we can and willl give you compassionate and caring advice and support, and share in your burden of living with CP! You are never alone with your pain when you are here on the forum!

Again I Welcome YOU to our "Family"

White Beard

Thank you White Beard and straydog for responding! First off, please know that I do understand that no one here is a doc and can not give medical advice. I am very sorry if my post seemed to come across like I was seeking medical advice. I am just having a bad day....very anxious...and wanting answers. Straydog, as of now, I have not been diagnosed with RA. These problems just started a couple weeks ago. I have had chronic pain in my lower back with nerve impingement for 3 years but the other stuff is new. Because of the lack of insurance the doc did a SED rate test which is relatively cheap....that was high....53 and normal is under 20. Her biggest concern, and the reason for the test was because she thought it could be polymyalgia rhuematica. However, that would have shown a SED rate in the 100's, so the doc felt better about that and said to just take the steroids and we will go from there. I felt like because she was so worried about the other that she kind of overlooked just how bad I was feeling!! The pain I was in was overwhelming and I am afraid that now that I have taken my last steroid....it is going to come back.....over the weekend when I can't get help! I guess I was just looking for some answers as far as what people have experienced...as far as the first onset of RA......the more I read the more I relate to what is said about RA. My sister has been on here for a while and I am glad I finally came aboard......Pain certainly makes you feel alone sometimes!

Thanks again and I hope to be on here a lot......

To All........Take care of you!!
Beckey

Thanks White Beard....that helped! I was afraid that my holiday weekend was doomed to just fade away to pain! I know there is not a guarantee I won't have pain, but it is nice to hear that it may not just come back full force like it was!

Have a wonderful weekend and take care of you!!

Beckey

Hello Mike and thanks for the welcome! I am very happy that my journey has brought me here! When you feel like no one can possibly understand and you are so alone.....it is nice to find a safe place! My husband is an incredible man and does his best to understand and I think that makes it even harder for me sometimes! I feel like my pain is not only ruining my life but his too! I feel guilty for always whining about how cruddy I feel and putting that pressure on him, so again, it is nice to find a place where people really do understand! Thanks again and take care of you!
Beckey

Antbuggey I hope you are having a decent weekend. I know you were concerned once you took the last steroid your horrible pain may return. Since they sort of build up in your system you should be ok for a bit longer.

Hi Antbuggey (Becky)...

First, welcome to the board :) I'm sorry you are dealing w/ so much... but glad you found your way here. There's lots of wonderful people here who really understand what it's like to live w/ chronic pain and health issues. I hope to get to know you better... I'm glad you have a supportive sister and husband... it makes a difference, definitely.

I have lots of medical issues, too, and - over the years - have dealt w/ many of the things you are describing. I have had a high SED rate for many years... I don't know what the highest has ever been, but it's never gone below a 35. I've had the high fevers, chills, joint pain and such...but the chronic fatigue is the worst. And I don't have RA. I have autonomic dysfuntion (nervous system disorder); fibromylagia and a host of other junk. Anyway, I'm not sure what's going on with you - but I sure hope you can get some answers. Sometimes, the "not knowing" is the worst.

I hope you feel better... and I hope you keep posting and sharing. Take care of yourself... --Tina

Beckey
I am sure that you still are that happy, kind compassionate person! it is still inside you! even with your pain, maybe just coming here and venting some of your frustrations, and knowing that when your here your among friends that do understand and care what you are going through, maybe, just maybe that ""mean"" ( as you say) in you, is really just your frustration with your Chronic Pain, and venting and sharing that with all of us here just might be enough relief for you from that burden that , that happy, kind and compassionate person can come back out, for you, and your husband and loved ones! It is possible you know. Of course getting a diagnosis and treatment is the best thing, But it helps when you can have a place to go such as this forum for a listening ear, and understanding, and compassionate support!

White Beard

Aw Beckey I become just unbearable when my pain is out of control. It happens to all of us. Its really hard to be a sweet nice giving person sometimes when all you want to do is scream at the top of your lungs trhat you are in pain and feel like crap, lol. I am having a rotten weekend because I live in Texas and the furnace has been turned on here way too early. It is hovering around 97 and has been for the past few days making it impossible for me to get outside unless I am in the pool. I hate it when its this hot. Its just awful. Plus my pain medication causes me to have awful sweats to top it off. Of course the AC is running non stop and the cool air from the AC tends to make my joints hurt. A real catch 22, lol. I am so tired of being inside I love being outdoors that I may break down and just sit in the pool for awhile.

Take care.

I went out and got in and it felt great, first time in this year and I was surprised how at how warm the water is already. But, like I said we are having such awful heat right now it really warmed the wateer up quickly. I had spoke to my daughter this morning and asked if her pool was warm yet, she said oh yes and had been for a bit. I sat on the steps and it kept me plenty cool. I know after a shower sepsecially I will really have a round of the sweats and I do not use hot, hot water as it will drive my BP up. I knew the ground was much warmer because I am not having to turn the hot water knob over near as much. Drying my hair is something else, I wear it short, so I am sweating on my head as I am trying to dry my hair, lol. It does get embarrassing when out in public, especially in the winter when everyone is looking at you because you are having a meltdown and water is dripping off of you. I always use Viva paper towels as they absorb very well and do not disintegrate the minute they get I also get night wet. The night sweats are the very worst of the lot, I also get the night sweats with the crohns disease makes it a lot of fun. We have had a lot of humidity here already and I don't breathe well either in it. The air does get very thick with the high humidity.

Its after 7:00 pm my time and only dropped to 92, jeesh. Going to be a long hot summer.

Hello Pete, so very nice to meet you! I have read MANY of your posts and what an inspiration you are....Thank you for the smiles! Also, thanks for the kind words you posted here! I am really glad to be here and looking forward to spending a lot of time here. Again, very glad to have now spoken directly to you and glad to have such an inspirational and amazing new friend!! There seems to be many amazing people here!
Take care of you,
Beckey

Awwww Pete, of course I was talking about you!! Every family needs a goofy one, and he is the one that EVERYONE loves! I do appreciate you and all of the other wonderful people here.....I think my meanness is even beginning to fade, and that can only be because of the wonderful folks on here!! I am very thankful for my new family!

Big hugs and take care of you!!
Beckey