So....a little over a year ago, I was put on Simponi and MTX after Enbrel and Humira stopped working for me. After almost a year of the Simponi/MTX regimen it finally seemed to be working. I had more energy and finally some pain-free days. However, that was short-lived. Since mid-March I have noticed an increasing amount of joint pain and decrease in my energy. I am just so sleepy all the time - no matter how early I go to bed, I never feel like I slept enough. Now the pain is constant, all day and all night. My prescription Naproxen does nothing to dull the pain. My hands and feet just ache and have a burning sensation. The neuropathy has returned to my toes, and my knees and hips are just throbbing. In addition, my right knee is swollen, making it difficult to bend. I am only 44 years old and I am just exhausted. 24/7 I have PsA "on the brain" and it affects everything I do. Sitting, standing, walking, concentrating. I am sure it is being noticed at work since I now have to do everything slower, and write more stuff down or I forget it. My commute is 2 hours each way door to door and sometimes I just want to scream because no matter what position I am in, I am uncomfortable. Sometimes I wish I could just work from home, but that is not an option offered where I work. I fear that I may have to go on disability retirement sooner rather than later, and that thought scares me because of how much less money we would have. Anyway, I am just really down over this....I know my choices in meds are getting fewer and if this is what I feel like on meds I can't imagine how horrible the pain would be without them.
HUGS! It's a tough situation to be in. I hope you find something that works for you soon. Disability is there for a reason, and although you may need to tweak your lifestyle choices when it comes to money, there are many ways to still live well while spending less. The best piece of advice I can give you is to start making changes now and put aside as much money as you can. You can also look into employment somewhere where you can work from home. If you go to disability.org, you should be able to find links to places that help find jobs for people with disabilities in your area.
I don't have the option of going on disability as a SAHM for the past 13.5 years. It sucks not to have an official work history - I do TONS of work for non-profits, but it's all volunteer ... and I do take care of friends' kids, but a lot of that is barter and not official paid work. This fall, I'll be working a lot less (one kid going to kindergarten, the mom of the other child going to part time), so we're looking at surviving as family of seven on my husband's $32,000 a year (while dealing with being a gluten-free household, medical expenses, homeschool expenses, etc. etc. etc. It will certainly be an adventure in further frugality!
I hope you find some relief soon. Have you tried seeking pain management help either through your doctor or a chronic pain management doctor?
Suzzane, I am so sorry and so disturbed by your degenerating condition! The commute is a killer, I know. I have no idea how you are doing it. Obviously you need knew meds and pain meds of some kind. I don't know what that would be, sorry. I understand your fear because I am going through very rapid degeneration and joints locking up and constant pain too, even in the muscles attached to the joints. Today I commuted too, only 1 hour each way, but I teach art to K-5 kids, so it is an on your feet, very hard day. I overdosed on Aleve and muscle relaxers. It's not helping either.
If you didn't have the strain of the drive and the job, you could concentrate on taking care of yourself, not be so exhausted and probably in much less pain. I would think of sacrificing the money for a better quality of life. I'm thinking of it and I hate to, I enjoy working with kids, having my own income. Can you go back to the doctor and see what he can do?
My heart goes out to you. Commuting sucks around here in general let alone with PsA. Hopefully you will feel better soon and it is a flare that clears on its own. I know I can talk til I am blue in the face but we really do feel for you. I have started to spend more time with my hobbies. I am motivated every so often to coupon - not only does it keep my mind off things, it also helps me save money. My other hobbies vary by what I can do in a particular day so I have a choice - in my case, I am trying to make money with my hobby so that I can have it as a back up if I have to stop my full time job. Modifying is becoming my middle name lately and everything keeps changing around me. Don't give up, things may surprise you and lead you in a different direction. Hang in there!
Dear Suzanne,
I asked my Doc about naproxin when I was there last, I told him that it sounded familiar, I had been shopping his 'hand-outs' in the waiting room. He said it was just Aleve with something in it to keep from having stomach problems. Have to be careful what I say here, remembering the rules of the site, GET ME?
I take Oxiprozin, have for years, best maintence drug I have tried for muscle and bone pain. Opana is the narcotic, though I will not and can not take that on a regular basis, and have to take phenergan before. Cannot take the Opana ER, those time release meds cause me to about dig my skin off, must be loaded with caffeine.
Lyrica is what I take for nerve pain and that includes sciatica. Unfortunately it is a trial and error process, but hopefully we have all been of some help and hopefully the Tommy Copper will help too.
Good luck, feel better,
SK
Well no wonder I am in pain!! I was already taking more than the suggested amount of Aleve with no relief, so they gave me the Naproxen 500 mg tablets. UGH!!! Sometimes I wonder if they just think I am making this up?!?! I called the Dr yesterday and he called in a prescription for Methylprednisolone. It's a dose-pack of 21 pills that I take over 6 days. It better do something because I am getting crabbier by the day and my husband is ready to hide under the bed with the dog to avoid me.
Hey Suz,
It is a wonder you still have a stomach lining!! The steriods may help you, but good luck on sleeping, you will be ready to kill to sleep by day 7, but they may make you feel well enough to get some things done! So get the dust bunnies from under the bed for Hubby and Rover!!!
I know I get unbearable too, my husband has a 'bunker' in the basement to hide from me!!! HA!!
You have to keep an eye on these Docs, and you may have to insist on something as a maintence drug for pain! Time to tear into him!!! Ask him if you can move in with him when your husband throws you out!! Shake his tree!!!!!
SK
Oh Suzanne, you have my heartfelt sympathy! And lots of HUGS for you. What a terribly frustrating situation to be in. To start with, your drive alone is killer and would exhaust even the best of them. Then you have to deal with the nonstop pain and fatigue...I just feel for you.
I agree with nym, it might be worth it for you to tweak your lifestyle if it's possible, and go for applying for disability. And, as nym said, perhaps you can find something to do from home. Like you, I got to the point where I just couldn't work anymore. I had to take a year off, and thankfully my family has helped me out. I'm doing some pt work now but can't imagine a bruising schedule like you have with this disease.
Thank you both. It has been hard. We have a house that we are so "underwater" in right now (like everyone). We ar fine as long as we have my salary. It's a double-edged sword.
Very sorry to hear about your current issues Suzanne. The way you describe the constant pain and tiredness is exactly where I have been for the past few months. It is very hard for even those close to you to understand just how constantly draining PsA can be. How do you even try to convey to people the feeling of getting a full nights sleep and waking up just as tired as when you went to sleep.
I’m only starting to come out the other side because my amazing wife was insistent that she come to my last rheumatologist appointment. She helped him understand how hard it was living with someone in a state of constant pain and exhaustion, her tears probably said everything. For me Prednisone has made a huge difference, I actually have energy and much less pain.
I’d encourage you to get that knee seen to as soon as possible, unfortunately not having my right knee treated properly for some years sees me with osteoarthritis at 35. A knee that locks, cracks and is a constant source of pain is not something I would want anyone to have to live with. You may need an aspiration of your knee joint with a cortisone injection post-aspiration.
All the best.
AussieWebb