Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I been experiencing something completely new. Since last Sunday I have had horrible sleep. I seem to wake up every hour in pain. I think it stems from moving while sleeping which causes pain all over. Every muscle hurts, hands, feet, neck.....you name it. Every cell. So I'm getting very little sleep. I wake up for work during the week at 4:45 AM. Last two days I have been near tears as I sit and watch the news but I literally can't cry. I was always a crier. Sad movies, emotions....etc. I've horrible dry mouth and itchy dry eyes and of course skin, which gets dry every winter. My only saving grace during the day has been my medication for ADHD which somehow blocks pain signals to the brain but even now I am having some break through pain during the day, I am on MTX and slowly titrated up to 6 pills this last Tuesday. He had me start with one...then 2 the next week and so on until now at 6. The first 2 weeks I had side effects but not now. Oh, and the memory loss! That was a big issue pre-ADHD diagnoses and the meds fixed that. I was sharp again. Able to function and now it's back. In a scary way. Almost like mini black outs. I forget things. Example: Monday the horse shoer came. After daughter came home that night she asked how her horses feet were. I told her. The next day I asked her if she knew the farrier came? That kind of stuff is happening and a lot. And it's scary. It's like some part of my brain is lost in a worm hole.
My next appointment with my Rheumy is January 5....should I be writing all this down? And what about pain? How am I suppose to sleep? I can't take Ibuprofen and he said I shouldn't take anything for pain, that the MTX will take care of that. Not the stuff at night it isn't
I'm just at a loss at what to do.
My next appointment with my Rheumy is January 5....should I be writing all this down? And what about pain? How am I suppose to sleep? I can't take Ibuprofen and he said I shouldn't take anything for pain, that the MTX will take care of that. Not the stuff at night it isn't
I'm just at a loss at what to do.
For me MTX was zero help. My Rheum said that it helped about half of his patients, I was not in that group. Within a few months, he added a biologic. That is when I started to feel relief. Hopefully, he will find a combination that works for you.
My routine MTX dose is the equivalent of 7 pills(I do the shots) and my doc allows me to raise it to 8 as needed to help keep a flare down...without even calling him. Mind you, I've been on MTX for 10 years. The top dose for MTX is 10 pills....25 mgs.
But it sounds like you could use a biologic drug. Having suffered since age 25 and I'm now 64, let me tell you, those drugs are amazing. Keep your doc informed as to how you are doing. He/she needs your info in order to convince the insurance people that you need a biologic. Get to know his/her nurse and you can tell them and they will share with the doc and get back to you...providing his office runs that way. I know mine does and it works beautifully. The nursing staff really runs the place and they are the gateway to the doc so they are your best friends. I know who to call when I need more meds.
Remember, you are just beginning into the life long journey of RA so the sooner you can get everything under control, the better. The first 5 years of your RA will determine the course for the rest of your life so they want to keep the inflammation well under control
It will get better.
gentle hugs..............Jen
I think the MTX has helped somewhat but the titration was soooo slow. I'll give it a chance and see what happens. At least 2 months on the full 6 pills.
Thanks Jen!
Yes, it does sound like a flare but I am such a newbie I haven't a clue. You really tend to think in the beginning if it's all in your head etc.
I do have tendinitis in my right foot. Then last Friday I was decorating and somehow stepped on my inside right foot with my left foot and dragged the shoe down my tendon on that side. I think it's a sprain but not sure. It swelled and it has a burning feel to it. Stupid stupid. Or maybe just a pulled tendon. It swelled a bit and turned purple. Maybe that even sent me into a flare.
I definitely want to give the MTX a chance but if that does not work then yes, I need to try other things. Parts of me are still swelling...joints.
I just got off the phone with the docs office and is giving the message to the nurse/doctor and said they would get back to me today. I hear all the time about RA in the younger. It must have been quite the journey for you since 25. My husband jokes about me being old now due to all my aches and pains. He just don;t get it. I don't feel old!
Yes, I need to make everything that I decide and do now of most importance. I need to beat this as well as one can with a chronic illness.
We have a group ride this Sunday at a park. Yes, I'd be lying if I said I was not a little stressed. I have to get up at 4:45 AM and be out the door 7:30. I need coffee and rest time before I even can think of going out and getting the horses loaded in the trailer and all the stuff that goes along with it. BUT....my horse is my "go to" through all this. I can't go to my family (which creates more stress, pain and emotional upheaval) because they just don't get over it. Their attitude is to just pick myself up by my bootstraps. Easier said than done.
RA inflames the synovial tissues...that is what it's all about. The primary form of RA is when the synovial tissue that surrounds the ends of the bones becomes inflamed and that in turn causes the joint fluid to change and become erosive to the bones, eating away at them. But tendons and bursas are also covered with synovial tissue and my Ra started with tendinitis that started in the back of both hands and slowly spread to tendons all over my body. By 2002, I was frozen. Fingers had tendinitis in the palm and backs so they didn't move and looked like curled sausages. Then it spread to both sides of both elbows, all the muscles of the shoulder(tendons attach muscles to the bones) along with major bursitis, all along my rib cage along with inflamed cartilages in the rib cage, all along my spine, hips, knees ankles and toes. The bursas in my knees became so bad they would burst from the excessive fluid in them and that would inflame all the lower leg muscles. They still do. So from 1977 until 2002, no one knew what was causing it.
I had so many frozen joints that my doc finally put me on Plaquenil(another first line RA drug) and it helped and I started to be able to move. And calcium deposits were showing up in all my tendons...a sure sign of inflammation. Then in 2005, my left wrist turned red and hot and an MRI showed that I has synovitis in my wrist....what RA does...inflames the synovium. I was put on MTX along with Plaquenil but it took off pretty fast and within 2 years, was on a biologic.
Most people take a biologic when they have moderate to severe RA which you seem to have(most here are moderate to severe) and it works better when you combine it with MTX. So expect to be staying on that along with a biologic. Once I found what worked for me(Orencia) then all my tendons stopped being "frozen" and instead, became lax. All those years of being tight resolved into laxity and now, they dislocate easily...I can even dislocate them myself (but I try not to). But I had to stop the drug for 10 months due to major surgery and the tendinitis is what came back. Once back on, it went away again so my doc then realized that it was RA all along and did some research. Found out it was a very rare presentation of Ra that is never even talked about but does exist.....backwards to 99.9% of all RA cases.
It's been hard but I was almost fatally abused as a child so I'm very used to pain and can block it out pretty well. Had multiple fractures that were never set...you learn to deal with it. So RA was just more pain and disability but to me it was ...sigh.....more of the same.
I guess if you've got to have a backward presenting case of RA, who better to get it.
Give this time. Make hubby understand that Ra makes you body feel like it's 95 but your mind is still very young. You can work around some of it but it takes time to find the right drug combo to get it under control. RA is NOT OA. OA can cripple you but RA can kill you as that same synovial tissue surrounds the lungs and the heart and is inside the blood vessels of every inch of your arteries. My cousin died of RA when her lungs stopped being able to expand and contract. She was part of the clinical trial for Enbrel and had incredible relief but once the trial was over, the drug was still not available to her and she died about 5 years later...before Enbrel was available to the public. Share this with hubby.
As for writing things down....YES! A symptom journal is a huge help. We often forget in between appointments. And you can do others like this.....let's say you feel pain starting in your wrist(just as an example)...take a cloth tape measure and measure around your wrist and take a pic with your phone and write it down in the journal. Then if the swelling starts, you can measure again and see how much the measurement has increased and take another pic with your phone and record it . You can show both to your doc when you have an appointment as documentation of the amount of swelling and he can see in the pics if it's red as well as swollen.
Be your own advocate and doctor!
As for sleep, try taking some Benadryl...it's the primary ingredient in OTC sleep aids and is cheap if you get a store brand. One or 2 tabs should help. And Melatonin can help too...take 5 mgs 1-2 hours before bedtime. Helps to re-set the body's timing on sleep which has been disturbed by your pain. And not knowing where you live, if you are in cold weather time, try an electric blanket...RA joints love heat. I grew up in Montreal and the winters were so cold I swear it had something to do with getting RA(even though I know better). Moved back to the US and got an electric blanket and boy did it help my joints and tendons. Hot showers or baths help a lot too. So maybe a dose of melatonin 2 hours before bedtime, then a nice warm bath with some epsom salts in it(the magnesium of epsom salts also helps muscle function) and a couple of Benadryl and then slip into a warm bed and you may sleep better.
In other words....TLC for ourselves really helps!
hugs.........Jen
Then two days before the test, I had a bad asthma attack. I was put on 40 mg of prednisone for 5 days. I picked up the words and had them memorized in one day.
It took a long time to put that together -that and the milia I get - little white hard spots on my face. If I am not on the right RA meds, or none at all, they just grow and grow and grow. They are almost gone now, after a bad year, so either Arava or Orencia is working. In fact, I have never read anywhere that RA causes milia, and in fact it is the prednisone. Except it always gets worse when the RA meds failed, back to before flares. Hey, I know my body!
As for night time pain, being immoblie causes the joints to stiften and they hurt more. I wear wrist guards at night which generally help my hands and wrist - it keeps them from flopping.But some nights I wake up with my hands killing me and they come off. Lately, I have been waking up my husband sobbing in my sleep the pain has been so bad. I never had that before except once or twice in 17 years.
As for not taking anything for that pain, that is just nonsense. This is your body, find something that works from your family doctor. I used to listen to the doctors until I realized they were not suffering in my body. The big thing is to be off pain killers probably 2 days before you see him, so that he can judge how well the mthx is working. Other than that, don't hesitate to find something that works. It really makes me mad your rheumy told you that.
I also find this titrating up stuff to be strange. I was given 8 pills from the first week. Mind you, after a year, I realized they were not working, and I got to go on injectable, which is so much better. The pills were ruining my stomach, too.
So I hope you can find something to stop the pain, esp. at night. Prednisone works well, and hydromorphone, etc. I know longer care what anyone thinks about what I take, I am the one who has to judge how bad the pain is. RA is something most people cannot imagine how much it hurts.
Gentle hugs for you!
I think my flare has finally ended. Well, as you know there is always pain somewhere but not like a flare-up.
No one knows what triggers one but I think mine must have been triggered by last Friday (a week ago) when I stepped on my own tendon and drug my foot across it. The inside of my right foot hurt so bad (a sprain possibly)and they say pain can trigger a flare as well as so many things can.
Yesterday, Sunday, I had to wake up at 4:45 to get ready for a group trail ride about an hour away. I took an antacid with a Ibuprofen and later Xanax. I been really needing the Xanax lately due to the anxiety caused by the RA. It went well BUT the only issue I had was un-supportive family members. First, I let all the horses out of the trailer when we got home and the last one, I ended up smacking myself in the head with part of horse hardware, very hard. Then daughter starts complaining she is getting a sinus infection. But on the weekends it's up to her to take care of the horses and stalls. Typically when we get home after a ride she feeds, waters and cleans the stalls. She starts complaining about doing it. I get furious. I was in pain all week and I'm the one that still went out every morning to do it. Plus she knows when you have animals it does not matter if you are sick or not....you have to take care of them. I had no sleep all week due to my flare-up and was tired. First ting husband asked as we walk in is, "what's for dinner" I think if looks could kill.....he would not be here I was so mad. He went out and got us dinner. But it got bad when it was 6:30 PM and I wanted to go to bed. WHAT? Like my going to bed was going to ruin his night. He really need to understand this is not all in my head. I needed sleep. For the first time in a long time I went to bed and cried. I was hurt. I was mad. Furious. A week of no sleep and constant pain and I'm the bad guy.
I have books and have saved things on my laptop about RA and what it does. I am trying to find the right time to sit them down and say, "Hey, I really need your help and support." They don't realize this is lifelong and not fun at all for me. I don't want their pity but darn it, I want empathy and want them to understand I will sometimes need help.
They don't know I struggle with putting toothpaste on my brush, getting shampoo and conditioner out of the bottle, flushing the toilet handle, pulling up my jeans to button them and zip them up. bending over to slide on my underwear because sometimes I can barely lift my legs to put them on because my knees hurt. Well, I'm sure many of you know.
I really need to sit them down and hope I don't get flack for it.
No sleep on top of everything else?
Have to agree on the doc suggesting MTX would cover the pain. There are other options for pain.
As far as the memory problem between RA & ADHD I find it to be different. Although both can be hard to explain . ADHD I describe like fast forwarding a movie on its highest speed. That's how I felt with my attention & thought process, especially under stress or pressure.
As with RA each case of ADHD is different . My daughter has struggles in other areas with hers & has more difficulties as hers is more severe in general. I don't think she goes one day where she does not misplace things or make multiple trips from car to house before gathering what she needs.
I find the memory issue from RA connected to exhaustion via brain fogs.
I'm curious if you don't mind sharing what medication you take for the ADHD? I know certain anti depressants can help block pain receptors but can't touch any think even remotely related to that line of meds.
I'm glad you put that call in no reason to go through such misery without reaching out for help.
It's disappointing to hear doctors continue to misinform & allow patients to suffer needlessly. My heart goes out to you .
Let us know if your call is productive.
Hugs
Sammy
All I got out of the nurse was sounds like I was going through a flare. DUH! From what I hear many RA docs won't give pain meds. I can only take Vicodin due to gastric bypass.
The drug I am on for my ADHD is called Vyvanse. I take 2 40 mg pills a day. I had to change from 70 mg a day due to it petering out at about 2 PM. I work until 5 then I work at home....the greatest thing is I have no problem sleeping. It's my saving grace as far as pain during the day Blocks pain signals to the nerves.
Plus....my husband was on a tirade this morning and after he left I was moved to tears when my daughter came up to me and hugged me and said, "it's alright Mommy" (I love at 22 I am still Mommy) She is not a huger or one to show emotion so that meant a lot.
I would hope the nurse would let the doctor know. There are non narcotic pain meds. Not sure each doctor is different.
Makes me so mad when doctors allow patients to suffer needlessly.
My goodness could at least explore some options.
Like so many if this dr ignores your concerns perhaps it's worth considering another doctor.
I'm so sorry. Hope you feel better soon. Thank you so much for sharing. It's good to know.
Sammy