I’m at at the point where all I can think about Is having pain, every day and for the rest of my life.
The past four days or so have been so bad. I can barely walk, and I keep waking in the night because I am crying out. I just don’t know what to do and I am so frustrated. I can feel my tendons because they Are so inflamed. They are swollen and hard. This is supposed to be “idiopathic arthropathy”. I started a new drug (Savella), but I don’t understand how that is supposed to work when it is for neuropathic pain. I have symptoms of joint and tendon issues, so I’m just not sure it will work, but I will continue to take it and hope for a miracle.
My new rheum is great, but after being so beaten down by the last two, I am afraid to talk to him, because I just don’t want to hear that this is in my head or that I am making things up. He had done very thorough lab work that doesn’t show a lot aside for an extreme,y elevated ANA and elevated Rheumatoid factor. I have painful rheumatic nodules all over my hands, one knee and an elbow.
I am at a loss. I don’t know what to do. I am so overwhelmed and I just can’t I aging that this is my life now.
Those who know me know how I try to be positive, but somehow that attitude escapes me right now. I am open to suggestions. (Other than changing my diet or any naturopathy) I feel crappy, so please BE GENTLE!
I'm so sorry to hear you're going through this right now. Not that it matters much to treatment, but are you also diagnosed with RA as well? I thought that the nodules only happened with RA. Of course, that still doesn't explain the tendons. I went through a bad bout of this last year, although it is an ongoing problem. For this acute phase, you can try warm soaks, and gentle (gentle) stretching. Clearly, if it makes things worse, stop. For some of my worst tendon problems this helps. I've also done a lot of physical therapy for these types of problems, with some degree of success.
I don't remember what meds you are on now, but I'm wondering if it's time for an adjustment. Feel better soon.
Still doing Remicade and MTX. My doc wants to do a month trial of Savella before any adjustments to other meds. He needs to know what is working and what is not.
So far, I haven’t been diagnosed with anything but PsA, but in my heart I feel like there is more to it than that. I wouldn’t be surprised if I has RA as well, but the nodules would be the only symptom consistent with that diagnosis.
My labs don’t support inflammation, so I am guessing that the PsA is managed with the Remicade, but that whatever other underlying cause for the pain, nodules, tendonitis and enthesitis not? Im at the point where all of this has gone over my head,and I just can’t logic my way through why I still feel like poo.
I am doing aqua PT and I really like it a lot while I am in the pool. I just feel AWFUL the next day. I keep trying though. I’m thinking that I will get used to it eventually, although, I have been at it for six weeks.
Oh GrumpyCat I felt crappy like that yesterday. Same thoughts, about growing old with this (as if growing old wasn’t challenging enough!) I’m a bit better today, but that could change any time!
With an elevated Rh Factor, it sounds like you may have both RA and PsA. Fortunately, the treatment for both is similar. Your new rheum sounds thorough, that’s good. I think you need to test him out: bite the bullet and give him your best shot. You KNOW this is not in your head. You are not making this up. If he suggests you are, and that the problem’s in your head, that will tell you a lot about him!
Yes, you are usually positive and good humoured and … witty and funny! You’re down, I’m sorry, and I hate to think of our Grumpy Kitty like this.
You pointed out that your labs don't show inflammation. But for some people, that's true all of the time, and is not a good indicator of disease activity. My rheumy has to make treatment decisions based on my complaints, and feeling for inflammation.
As many as 42% patients with RA have normal lab results. That’s why there is a list of diagnostic criteria. Hopefully, you can find the correct treatment so you don’t have to suffer so much.
I'm so sorry to hear this. I've been in a lot of pain lately too. For some reason I suddenly have some relief today but haven't figured out why or how.
I know your frustration and fears. I'm having them too. I get to a point where it consumes my thoughts and I think of little else.
One thing I learned from when I first had signs of PsA but had no idea what it was, I need to move. Even when my hands ache not doing anything, when it hurts to even slightly move a finger, I still try to stretch them. Just while I'm sitting, it seems to be the gentle way to do it. Trying to open doors or do the dishes is just too painful and frustrating.
Hang on, it has to get better. Hope the meds work for you asap.
I am at that place. There are no right words during these moments. Or I just haven’t found them yet. But what helps the most lately is crying out to God in prayer and reading Psalms. When I get depressed with it. You are in my prayers today. Don’t give up.
I remember when I was first diagnosed (less than a year ago), I was in this exact place. All of the advice this forum provided me was great during that time, even if it came from reading others posts. I had to keep reminding myself that the pain I was in was temporary because I couldn't live like that for the rest of my life. I will be 37 next month and honestly believed I would be wheelchair bound and I am not. Keep fighting, exercising, and advocate for yourself. The doctor will listen. I can relate to the screaming in the middle of the night. Hang in there. Everything is temporary.
So sorry to Hear about your struggles. I too have had normal and near normal blood work. But I fortunately found a rheumy that looked at the big picture almost 2 years ago. It’s a big help to be getting the right treatment for this disease. This is not what any of us had planned, sadly but just take one day at a time. We learn to live very differently than most. But I can tell you that when you get to a good day, and I promise it will happen you will enjoy each of them as never before. I wish you all the best. I know it doesn’t feel like it but half the battle is getting to where you are right now. As you’ve found out, a Good rheumy is worth a million and for some it’s takes many years to get the diagnosis. Ive been on biologic meds for about 3 months and currently experiencing a flare and as much as I feel like ick right know its so much better then pre biologic. We are here anytime you need to let it out, this is a very good group for support. best wishes to you and I hope the you get some relief real soon.
I was where you are, last year, but after getting on Remicade infusions, I feel better. Humira was by savior but after 5 years it quit working. The time in between the 2 drugs was not good. What I would give to feel like I did on Humira, is EVERYTHING. My wife, family, and friends all know I am in pain, but cant comprehend the reality of it. I am the strongest willed person I know but I am 44, and my will power is not what it was when I started this at 16. I have to mentally convince myself there are things I want to still do and events that I want to be a part of in the future.
I am one of the lucky ones where prednisone improves my condition. Some are not as lucky. I am well aware of the side effects of it and I do not take it daily, but when the time comes that I do need it daily, I will not hesitate. I have chosen to live shorter if necessary, on prednisone, than to live longer and be miserable, crabby, and resented for being miserable. I have read many stories on this site, of loved ones that took too many steroids and it destroyed them. It is not my intent to try to end my life by any means, but if I can enjoy life better with prednisone, I will.
If you find a drug that works, keep your blood checks regular and stay safe as long as you can. Stay strong and stay safe.
If you do not have a doctor that will listen, move on. Simple as that
christopher said:
I was where you are, last year, but after getting on Remicade infusions, I feel better. Humira was by savior but after 5 years it quit working. The time in between the 2 drugs was not good. What I would give to feel like I did on Humira, is EVERYTHING. My wife, family, and friends all know I am in pain, but cant comprehend the reality of it. I am the strongest willed person I know but I am 44, and my will power is not what it was when I started this at 16. I have to mentally convince myself there are things I want to still do and events that I want to be a part of in the future.
I am one of the lucky ones where prednisone improves my condition. Some are not as lucky. I am well aware of the side effects of it and I do not take it daily, but when the time comes that I do need it daily, I will not hesitate. I have chosen to live shorter if necessary, on prednisone, than to live longer and be miserable, crabby, and resented for being miserable. I have read many stories on this site, of loved ones that took too many steroids and it destroyed them. It is not my intent to try to end my life by any means, but if I can enjoy life better with prednisone, I will.
If you find a drug that works, keep your blood checks regular and stay safe as long as you can. Stay strong and stay safe.
You stated that your RA and ANA are both elevated. If this is true although I'm not a doctor it sounds like RA and or Lupus. The ANA signifies Lupus but you can check online for this. Also if your in that much pain and the meds are not helping then I would get some pain meds. Your so not doing well right now so I believe you should call your RA doctor and tell him all this as soon as possible. Hope this helps and good luck hun.
Oh GrumpyCat I felt crappy like that yesterday. Same thoughts, about growing old with this (as if growing old wasn't challenging enough!) I'm a bit better today, but that could change any time!
With an elevated Rh Factor, it sounds like you may have both RA and PsA. Fortunately, the treatment for both is similar. Your new rheum sounds thorough, that's good. I think you need to test him out: bite the bullet and give him your best shot. You KNOW this is not in your head. You are not making this up. If he suggests you are, and that the problem's in your head, that will tell you a lot about him!
Yes, you are usually positive and good humoured and ... witty and funny! You're down, I'm sorry, and I hate to think of our Grumpy Kitty like this.
I definitely appreciate your desire to get some pain relief. When I am having several bad days in a row, I will even dream about being in pain. I also detest the word "idiopathic". When I feel something wrong with my body, I want at least an educated guess at what is causing my pain.
Have you considered seeing a pain control specialist? I have been seeing one since 1995 after back surgery. That was before my diagnosis of Psoriatic Arthritis. It was my pain doc who suggested talking to my primary care doc about a referral to a rheumatologist. My pain is treated by some rather strong drugs. My pain doc told me not to concern myself with addiction when I first started seeing him. I did sign an agreement that I would not seek pain control from any doctor but him. When I had my knee replaced, I notified my pain doc of the surgery date and told the surgeon I had all of the pain medicine I needed from the pain specialist. He adjusted what I was taking to fit the fact that I was having surgery.
You are being properly treated for your arthritis (I don't remember seeing what type it is) with the Remicade. However the drugs that treat our various forms of arthritis don't address pain except in some cases to reduce inflammation. I receive prednisone, Methotrexate and Humira for my PsA from the rheumatologist. She relies on the pain specialist to help me handle the associated pain. No only do I receive drugs from the doctor, he also councils me on the use of physical therapy, exercise, diet and psychological therapy to help with my pain control.
Incidentally with your tendon symptoms, you may want to ask your rheumatologist about Psoriatic Arthritis. I have had intermittent bouts of tendinitis since the age of 13. I do not have the Psoriatic plaque on my skin; not all of us suffering from PsA have plaque.
I hope I at least gave you some new information. My pain doc is the one that certifies my disability for both Social Security and the insurance company with whom I have long-term disability insurance. You have the right to be relatively free of pain. Maybe you aren't asking the correct doctor.
Hang in there GrumpyCat! I find that a few days of pain relief from proper pain management gives me the chance to emotionally regroup and come out fighting again. It allows me to 'reset' myself mentally and emotionally when I get pain relief.
You may need to try many meds, or med combinations, and they take time. You very likely will find something that helps significantly, and when that happens, you will be posting here to help others! It's really tough when you are in the trenches, and you did the right thing by posting about it. Just visualize us all tossing like preservers out to you, while you felt like drowning in fact we are all ready to buoy you up and support you.
Oh GrumpyCat I so feel your pain (no pun intended). My best advise is to try not to think about how much you will hurt tomorrow or the next day. When I do that I get so depressed. It sounds to me like you may have more than one thing going on and that is possible. You can have Psoriatic and RA at the same time and they can occur with Lupus. Who ever came up with the word "idiopathic" was an idiot, we all want answers!!!! It took me almost 4 years to get a diagnosis. When I think about how much damage was done in that time it pisses me off. I was so beat down by doctors that told me they "couldn't find anything wrong", "all your labs are normal", and my fav " these things just happen as we get older" ( 35), it took a very special doc that never made me feel crazy and getting married to finally figure it out. I told him to test me for all the worst ie RA and Lupus (negative) and then my wedding ring irritated my finger and caused a Psoriasis out break on my finger and when he saw it the light bulb came on lol. Since then I have moved and had to find new docs. I love my rheumatologist now but still hunting a good primary care. IF you think your rheum has your back and is open for discussion sit down and talk to him about where you are and what your goals are. Treatment takes time, set small goals like sleep for 3 hours straight, or walk to the mailbox without crying and work to the big goals like remission (a girl can dream can't I). When things get really painful I either take a hot shower or soak in a hot tub of Epson salts (depends on if I can get in and out of the tub that day or not) it is not a fix but sometimes it helps especially with tendon pain.
I take Savella and Lyrica. I was told by my drs. that Savella was designed for Fibromyalgia and that it is an antidepressant. Maybe your dr. saw you crying and thought that many PsA patients also develop Fibro hence the Savella. It helps me inmensely, but it took 3 months to start working.
The two drugs--Lyrica and Savella help my neuropathic pains as well. I need them both to do their trick, and they do!
Wishing you relief and health. I know what you are going through.
Thanks for the insight, all. I do have pain meds and I take them daily. Then I have meds for prn pain as well. My thought is and has always been that they only help so much. I pretty much at my limit for want I can take and still feel human, so I’m not willing to escalate the dose AT ALL. If I can get to a 5; I am a happy girl.
I have been under treatment for over a year, but just found my new rheum less than two months ago. He is so open to suggestions, but I am a very different patient than I was a year ago. I don’t have a whole lot of faith in docs and think that many of them should not be allowed to interact with people. I have been insulted and accused, so it’s incredibly hard for me to be honest with any doc other than my primary, who has been my advocate and life-line and ardent defender.
Sorry, I got whiny. The last few days have just been so hard and I just can’t describe it to anyone. I don’t have the words, but I know most of you know that feeling just as well as I do. It has been a year, and I have had pain every day. I just never thought that I would still be here at this point. It is, simply overwhelming. I guess, ultimately, it’s time to go back to therapy and get my perspective back.
best wishes to you and I hope the you get some relief real soon.