Major downward spiral while on biologic. I feel like giving up

This has come on very suddenly. I have plantar fasciitis in both feet, and it's usually just below the radar but managed. Right now, I have to walk like Frankenstein, flat footed. Nothing is helping. The tendons feel like they are tearing and I get sharp pains when I walk. My hands are competing for attention, I guess, because my left thumb is unbearably painful. The right one right behind it in pain level. My New Year's resolution this year is to be positive, and fate is having a good'ol time with my medical junk.

I had my esophagus stretched on Monday due to trouble swallowing and chest pain during swallowing. It helped some. I see a hand specialist this coming Monday, and will get some help, hopefully.

I am a wee bit discouraged to be this bad off after 3 months of Enbrel. I got a medrol pack from my rheumy today that will last 12 days. Anyone have words of wisdom or encouragement today? I had to call in ill for work and I hate doing that.

Hi Michelle,

I too have planters fafasciitis I both feet, it's pretty painful to walk. Call my rhuemy she want to see me Friday. I'm on my third shot of humira and she wants to start shots every week. I haven't been able to work two days in a row since October. I also take me from 12 mg of me from which is now on the weaning cycle I am starting rotation o f 2 1/2, 3 pills a day for week. I also went to see the ortho, who recommended foot cups for my feet and a splint. I opted not to get those this time but will hold off until I see what happens Friday.

I don't have much advice for you but just want to let you know you weren't alone.

last month I had an infection so I was delayed with my second shot by one week. I hope you feel better soon

Hang in there! Don’t give up. Like FDR said, “If you feel like you are at the end of the rope, tie a knot and hang on tight.”

Don't give up. Your doctors have a LOT of options to try. Make sure that you have good doctors, then give them a chance to do their jobs.

Keep going Michelle, I know its tough but we don’t have an option, I’ve been off from work since the middle of December and although I hate being off I know I can’t go back yet as I’m too fatigued and in pain. Patience is a virtue they say but its tough when nothing seems to go your way. Thinking of you x

So sorry for you. I know what you are going thru. I am on MTX but when I couldn't walk due to what you were experiencing my Rheumy gave me a course of steroids to ''rescue' me. It worked for awhile. I could barely walk and needed the rescue. Can you talk to your rheumy about steroids?

michelle,

I know very well how pain can be so over whelming you just want to give up...wears on you, cannot sleep and due to cycle of it just can become more and more painful.

I hope you go see podiatrist...i had team of doctors including podiatrist since i have severe RA in both my feet. My doctors loved outdoors as much as i did and eventually helped me to get in a place where I actually was able to go back packing again! Something everyone thought was impossible!

I also had pain specialist, Rheum plus other specialist due to other problems. All of them kept in contact by email mainly, since they all were Kaiser doctors. I had to leave and pain specialist i found wrote letters and had all my doctors do the same. Some did not like it but did it since pain specialist was well respected and pushed them into it.

I am telling you this because when they all are on same page than you get meds that compliment rather than work against one another or create major side effects that make things worse.

So even though right now life is bleak and believe me right now i also feel that way. If you live in snow country it exacerbates it. Would be like trying to walk on sand in a way...so moves feet so really hurt. I hope you go see both pain and foot doctor asap so you can get relief. There are things they can do so do not give up hope.

If i did all those things....than there is hope for all of us! I try to remind myself now as i am much older and just age is complicating things and i still believe with right doctor and me doing my part i again will be able to hike again...and i believe that is true for you too!

But my sincere sympathy on amount of pain i know you are experiencing right now. I just hope knowing you are not alone and there is hope might help just a bit even.

Hi Michelle,

I am so sorry to hear this. Did you ever have any relief while on the biologic? So, are you staying on it? I'm applying to get a grant for it and now I am scared to go on it. I hope you get some relief soon.

Sheila

I personally know your pain. Four years ago I could not get out of bed because I could not weight bear on either of my feet. I went to a foot doctor and he put me my feet in a boot. I had to yell at him to get him to get him to understand my pain. He finally after three weeks of me calling him every day gave me a shot in the foot.

The padding in the bottom of the boot helped some. My wife forces me to use a wheel chair if we are going any where that I would be on my feet for very long, this helps. Elevating your feet may help too, if you have any leg swelling, I also started wearing compression socks, this has helped as well because my legs were swelling to twice their normal size.

An injection of Steroid is a life saver for me. My Rheumy gives me a big shot in the butt every 4 months or so. They help after about 2 week and it gives me relief for about 3 to 4 weeks. I also have use a foot soak of hot water to help. I am carefull though because I break out with water blisters on the bottoms of my feet if I soak them to much. Stairs are a no no for me. The more stairs that I do, the more my feet hurt. Force yourself to wear shoes at all times. I purchased a pair of crocs that I slip on and wear when I get up in the night to go to the bathroom in. I wear them until I lay down and I am off my feet. My wife took me to a Shoe specialty store where they fit the shoe to your foot. These are my every day shoe that a where out side the house. If you tell them you have foot pain they will ask you a lot of question and then they will fit you with a shoe to help. The shoes cost about $140.00 but I could walk again with less pain. Well worth the cost.

I hope you find the relief that you need. I know that pain med's don't help very much for your feet. I take up to 90 mg of morphin with no relief for my feet. I have a spinal stimulator as well and it does little as well. The shoes and steroid shots has helped the most. But the boots and staying off my feet got me back to where I could walk again.

I wish you well and the best of luck...and I know your pain all to well. Stay down, and elevate. Let us know what works or didn't for you when you start to feel better.

I know how you are feeling I am going through almost the same thing. I have planters fasitiis in one foot and posterior tibialer disfunction in the other ankle. There are days I can not walk at all and feels like both feet and ankles are broken. I am currently on methotrexate, naproxion, and simponi. I have been on simponi for 4 months and is not working. I go see my Dr the end of the month. Maybe he will give me a mirical drug. If. Not not sure what to do cause I also am at the end of the rope. Feet pain must be one of the worst feeling. I was told to lose. Weight but how when you can hardly move. I wish you luck.

Sheila, don't be afraid of the biologics. Many people take them with great results and no side effects. I'm not afraid of mine, I'm more afraid that it will stop working.

Sheila DeRuzza said:

Hi Michelle,

I am so sorry to hear this. Did you ever have any relief while on the biologic? So, are you staying on it? I'm applying to get a grant for it and now I am scared to go on it. I hope you get some relief soon.

Sheila

Michelle,

I understand. I just spent the last 36 hrs unable to get out of bed and could barely do anything (like hold a book or eat) while the pain raged through my body. Painkillers barely touched it. Today I managed to shower and will power through making some cookies for my son's class (it's his 12th b-day!) and some other things. But honestly not sure how I'm going to make it through the rest of the week.

I've been through this enough times though to know that I WILL have some better days. I just need to ride out the very worst. I do feel like giving up, but like Rebel mom's quote, I tie a knot at the end of my rope and hold on tight.

Hang in there. Everyone here gets it. We're here for you.

thank you so much guys. i woke up this morning with sausage fingers on my right hand. i will post pictures if i figure out how to. took them on my iphone to show my dr next time i see him. haven't been able to type until now. i have gotten a couple doses of pain meds in me. feet hurt too, but not as bad as yesterday. it's hard to stay down, but i am really trying. my job has already called me to ensure i am coming in tomorrow. i told them if i can walk, i will work, never mind the pain in my hands. i don't know how i will continue to work. disability is looking like an option finally. i don't know anyone on it, so i don't know how to start the process. i have been suffering for nearly 2 years, gone thru 2 jobs as well. i don't know if i can even afford to go on it. this is all overwhelming and why i want to give up. thanks for responding and reading my negative rant. xxoo all

I do not know what you do for your job, but if you type see if they will let you use a voice activation program. My daughter uses it for school and she enjoys it. I will find out which one it is if you would like. Also, if you have an IPAD they have an ap that is voice activated and it will type what you say.

When my son was being recruited for FB and he visited The University of Georgia the learning team, I do not know what their official title is, told the group about it.



michelle said:

thank you so much guys. i woke up this morning with sausage fingers on my right hand. i will post pictures if i figure out how to. took them on my iphone to show my dr next time i see him. haven't been able to type until now. i have gotten a couple doses of pain meds in me. feet hurt too, but not as bad as yesterday. it's hard to stay down, but i am really trying. my job has already called me to ensure i am coming in tomorrow. i told them if i can walk, i will work, never mind the pain in my hands. i don't know how i will continue to work. disability is looking like an option finally. i don't know anyone on it, so i don't know how to start the process. i have been suffering for nearly 2 years, gone thru 2 jobs as well. i don't know if i can even afford to go on it. this is all overwhelming and why i want to give up. thanks for responding and reading my negative rant. xxoo all

I am a field RN, meaning that I don't work in a hospital or clinic, but instead go directly to the patient wherever they are. I do a lot of charting and hands on care. Wound care, total physical assessment, lab draws, you name it. I also do a lot of walking as you can imagine. Like a Mary Kay consultant without the fun of cosmetics, if you like. Teaching is a big part of my job too, and my medical EXPERIENCE as a patient is as useful as my education is.

So I sent my photos to the address given and I don't know where to go from here. I cannot find the photos either, lol. I am not a big computer pro. If anyone wants to guide me on this, I welcome advice.

Going through the Plantar fasciitis thing now also , well really since last January and am sorry you have to deal with it’s pain. So far to help I have had two steroid injections , 2 months in walker boot, one month in a cast , 6-8 weeks of pt and nothing helped. I even switched from a podiatrist to ortho at a well know facility in Philadelphia. The podiatrist did the cortisone, rest was ordered by the ortho . Was told by the ortho to avoid the inj at all costs since they can increase a tear. While I have no improvement from all of the above, I now also developed post tibial tendinitis . So now it’s a Arizonia brace( fyi …its ugly, awkward and painful to wear!) x6 months. It seems like it never ends does it? I had Shoulder surgery 2 weeks ago (RTC and bicep tear repairs) and I have to be off all NSAIDS and the Enbrel for 4 more weeks because they can delay the healing process…ugh! So yes, I can relate to all of you in pain and the frustration we deal with. All we can do is hope there is something /someone who will deliver us a box of miracles !! In the meantime, just push along, read all you can about PsA and inflammation , ask questions and never stop hoping. Today had been a very negative day for me, I needed to read all these postings…helps to know others are fighting even harder than me. Thanks to you all :0)

I have had pain for a long time which drives me nuts and leaves me depressed and with insomnia. You are dealing with a lot and it is discouraging, I try to do a relaxation tape every day to try to soothe my nervous system. I remind myself many times I have felt hopeless but at a later date knew happiness at least for a. spell. You are in what I call a rough patch. Hang on. My favorite guru says “relax into your destiny”. You can’t control when you have to call in. I know it feels awful. I repeat to myself surrender when I can’t control what is happening.

Hi there. I suffered from it for some time and occasionally still do. Unfortunately the only thing that really works for me in that respect is predniserone. Which comes with its own issues.

Gentle hugs!!

PsA and all that goes with it can be incredibly overwhelming. Take deep breaths. Things will work out one way or another.

I'm not sure if it's the same with you, but for me, if something little happens, it can cause a huge flare. I can get a cold and flare. I can twist my ankle and flare. I can have dental work and flare like crazy.

My doctor and I agreed to switching me from Enbrel to Remicade because although I got relief from Enbrel, it worked on my extremities and not on my chest/back - and there was really no way to adjust the dosage. Remicade provided HUGE relief all over my body and I'm so happy to be back on it after a break due to other health issues.

That stinks sorry your having that issue

I unable to get the Biologic therapy cause I have had Stage 4 Hodgkins twice.

I get joint injections every 3- 6 months That to stinks

Hang in there