Tired

General
1

Hello fellow PsA,

Well about a year ago i was put in a wheelchair because my left knee looked up on me and now i cant move my knee at all. My left foot is swollen each toe has that sausage look and i have Ps on the bottom of my feet and in between my toes. It is annoying. I have Ps all over my body but its the PsA that really took me out. Now my wife and i are not in the same bed, i have to use a hospital bed. Iam just a year into it really and iam so scared. And now my right knee is giving me problems and i cant put my weight on it. So now i need help with everything. I cant look up or around so good. This PsA is a BUTT!!!!!

So now iam just tired, i try to keep my head up ha ha not trying to be funny. But im on a steroid and pain pills. Im just so tired of this. My doc says it is going pretty fast in my body.

2

I’m sorry about all of this. You said you were on a steroid and pain pills. Have you sought a second (or third) opinion? There are so many meds that can be used, and steroid use is not ideal for long term use. And pain pills can mask a lot. Are you near a major medical center?

I would strongly encourage you to get other help. Yes, for some the disease can progress more rapidly, but the meds that you are on are not doing the job.

Read through the board here, you’ll find lots of great advice and experiences.

3

I agree with what Stoney has said. I have had those sausage toes and you do need to do something soon if you want to prevent permanent damage to those joints. For me the damage happened within a few months and now on my left foot all the toes other than the big toe are on an angle facing outwards and getting them to fit into a shoe is a problem. I can no longer wear an open shoe comfortably as my little toe hangs over the edge and hurts to walk like this.

You could try and eliminate all the manufactured, over processed food with added sugars, saturated fats, artificial colorings and preservatives and other chemicals. This will help anyone. Our PSA bodies are coping with enough without putting any more strain on our bodies by fueling it up with these unsuitable foods. Doing this will not cause you any harm and it might even help you. You can't go wrong if you cut out those foods mentioned, eat 5 Vegetables and 3 Fruits a day and limit your red meats.

Have you tried Organic Coconut Oil on your skin. This is not a cure but helps lift off P flakes. Soaks in very well and moisturizes the skin. Only need to do it every 24 hours after a shower or bath. Has anit-bacterial, anti fungal properties. Google it to find out the benefits.

All the very best.

4

I've been laboring over what to say as I am trying to reinvent my self as a kinder and gentler soul. Its not working, so I guess I'll just say it.....

We all love a doc who feels sorry for us and tells how bad our disease is. We REALLY like it when they give us feel good meds like predi and pain pills. BUT neither treat the disease.

So with true concern and understanding of how you feel...... (if yopu don't want to get really pissed, stop reading NOW)

You need to get to someone who will treat your disease NOW and treat it aggresivley. Whether it is injections in your knees (a start) DMARDS (immediate for the P, biologicals for the rest and some NSAID's for everything. There is NO EXCUSE for you being in the state you are NONE.

Secondly You need to get to work, If you don't get your A** out of that chair NOW, you never will. PT OT it doesn't matter - maybe both. (I know LOTS of people with only one working leg (and the working one isn't to grea) whomhave never even considerda chair - except at Wal-mart. A scooter for the bad knee if you can't use crutches, but if you don't start moving not only will your PsA take over your life, you will have blood clots (talk about REAL PAIN) if not a stroke or pulmonary embolism. The Predi will shut down or retard your adrenals the pounds will pile on and you will die from either diabetes or a heart attack. (You really can't choose which one but chance are they will cut a piece of you off at a time until one of them gets you)

And yes get on a diet. Even if your weight is ideal, you need to lose some. Every 10# you don't need puts 150# of stress on your knees.

This disease may be scary BUT I assure you there are lot scarier things if you don't go to work at fighting it.

Get some sun, some lotion, something to get rid of the scales they don't have to be there even if the P still is and they will make you more miserable than you need to be (there ar just some places you can't scratch.

Find a doc who will treat the DISEASE even if he is an A**hole. When they start to treat the disease THEN worry about the pain. You need a team to push you hold you accountable. YOU CAN get control. There is not a single recorded case anywhere of someone who has NOT gained something from treatment (maybe not as much as they would like.)

FWIW there are lots of people with PsA not so many Docs. If everyone who had the worst case or most aggresive their Doc had ever see gathered in a room and left one at a time with a doc. The room would STILL be full long after they ran out of docs.

You CAN DO IT, I know you can. I have (didn't have a hospital bed but I did have the wheel chair, they used it for my Mom at the finish line when I ran my first half marathon. (I don't run anymore , but the chair is pretty handy for my gardening tools and moving Carboys of wine to the cellar with that seat belt and all, it doesn't get stuck in the mud and goes down the steps easy)

It is hard and you will hurt, but Damn I can't imagine sleeping without my wife....

WE are here for you, it will get better if you choose better.

5

Lamb- There needs to be a firm voice.

cjquinn74- Know that we are all here to support you through the process. I have to fully support the need to get moving. Even if finances are an issue, PT can be super helpful. I will only go once or twice a week, and I do my exercises at home exactly how I am told to do so. It saves me a lot of money. For more severe issues, I do start out with the recommended, especially when hands on treatment is necessary. I'm a frequent flyer with the physical therapy office, and that's just fine.

Keep in touch, and let us know how you are progressing, on the search for a new doctor, and new treatment.

6

Oh Lamb you are too much! For your foray into your kinder, gentler self you deserve a new name, Lambie pie perhaps?

cjquinn74 I am afraid I must agree with Lambie pie, Stoney and Bella. I find it matters less what activity you do as long as you do something. I pretend I am a ballerina in a way heated pool 2-3X a week for $10 dollars per week. I treat myself to a hot tub dunk and some Dunkin Doughnuts afterwards. I find if you find an activity you like you are more likely to continue doing it. I went to PT and OT first and that is how I came up with this idea that suits me. The only thing missing is music. I find the waterproof MP3 players are too much money so I have threatend to duct tape my walkman on my head and cover it with a shower cap! My husband and son are not amused! I see that for veterans there is a new wheel chair that is part tank so they can get out on rough terrain and enjoy outdoor sports again. I think this is wonderful and donated some money to it. Find what suits you and do it. To give up and stay in a chair or bed is to invite diseases that are worse than PsA.

7

Thank you all for your replies. A hot tub dip does sound good so i might try that. Again thanks.

8

Sorry you’re having a miserable time, cj. When you say your doc says it’s going fast in your body, which doc is that, your primary or the rheumatologist? I think you really need to have a discussion with your rheumy about the impact this is having on your life. You might need more than pain pills, and perhaps a re-evaluation of the prednisone. Over the long term, prednisone can do really nasty things to a body. Sounds to me as if you need to get aggressive with this monster. Who diagnosed your PsA, your primary or your rheumatologist

9

You didn't mention a biologic. Is there a reason you're not on one?

10

Or a DMARD? I don’t get why your doc. has you on NOTHING to stop your disease from progressing?!! Uhgg!

11

Tired,

If you want to become educated. Go to psoriasis.org to start with and look at a few of their archived webcasts. Some of them talk about PsA. There's also a recent one on biologics. Do yourself a favor and watch them all 2-3 times. Then you should be educated enough to speak intelligently to your doctor and to evaluate your doctor and find another if you have to. If I was in your situation, I would be reading everything I could get my hand on and then some.

The webcasts are here. They can be hard to find on their website. You probably have to register with the website but that's not a big deal.

http://psoriasis.org/events/educational/webcasts

12

Ok my rheumatologist talked to me about humera and some other biologics but the prob there is i cant afford it. It will be 6 to 7 hundred dollers a month after my insur has done its part. He wanted to put me on Mtx but some family members did not do well on it at all so i did not want to take that risk. The steroids i just started this month and now i can move my toes more and the swelling has gone down. The big reason for the hospital bed is for the raise and lower on the back, to help me with sitting up and stuff before i had to use the bed sheet to pull my self up. Yes it sucks that im not in the same bed as my wife but it does help my comfort level. Thank you all for your replys and i will be looking at other things to try.

13

CJ, I think you need to talk directly to the Humira people and/or the Enbrel folks. After your insurance has done its part, the drug companies will often foot the major part of the remaining bill. Seriously, look into that.
There are many people here who will advise you to “Fear the disease, not the drugs.” Make no mistake about it, the permanent damage that PsA can cause will impact all aspects of your life severely and permanently. Be proactive. Fight this thing with all the ammo you can get.

14

You probably are sick of suggestions right now. And I am very sorry for the condition that you are in. None of this is fun and it plays hell on my emotions and my symptoms are not near as bad as yours. That said there are many more DMARDs than Mtx and they are pretty cheap. They will help control the disease. I have also been told that many of the companies that make the biologicals have programs to help people who cannot afford them. There is no reason for your doctor to NOT help you more. With your symptoms, it seems it should be treated aggressively and now not later.

I hope you can find some help. I know how hard it is to fight for what you need when you feel so sick. Blessings

15

If you have commercial insurance, Enbrel and Humira will pay very large amounts of your Copay. Also, if the biologic works, it's well worth the $700/month. Then you can work again and earn it.

16

I will and thank you.

Seenie said:

CJ, I think you need to talk directly to the Humira people and/or the Enbrel folks. After your insurance has done its part, the drug companies will often foot the major part of the remaining bill. Seriously, look into that.
There are many people here who will advise you to "Fear the disease, not the drugs." Make no mistake about it, the permanent damage that PsA can cause will impact all aspects of your life severely and permanently. Be proactive. Fight this thing with all the ammo you can get.
17

I didn't tolerate MTX well at all, and it did virtually nothing for me. But I've been on leflunomide for just over 6 months, and doing well on it. Minimal side effects.

18

CJ - I hope you find some relief soon. I'm glad you're looking into contacting the drug companies. When I was on Enbrel, the person I spoke with when I was put on it was great, had all the info I needed, and basically did the work for me. It turned out my insurance covers it all, but they totally put me at ease letting me know they'd be able to get me on it for a small amount a month if it came down to it. I hope you get relief soon. I do have to agree with Lamb - the more you move, the better. I have joints freeze up if I don't use them, to the point where I wake up several times a night just to move my hands/fingers so I don't have claws in the morning. LOL

19

Talking to the company helps…I was on enbrel and humira, neither of which were successful but, I was able to get my prescriptions for 5-25 dollars per month. Most companies will try to help you. Good luck with everything, good to hear you can at least move your toes a bit with the help of the steroids.

20

So sorry you have to deal with all of that. I understand. I know with my PsA it seems to go through phases of very small flare ups. Yesterday i could not move my hand at all. The thought of this spreading through my body is so scary and if I have a flare up, the reality of it sinks in.

Hang in there