I know what your going through as I have the same problems but I have sausage toes an now I have a big space between my big toes with the rest on an angle outwards.
The best suggestion that I can make ar the things that sometimes help me. I get my feet up on to some sort of a foot rest every chance I possibly I can whilst sitting down. I have a recliner chair and that is better because as it supports my calves.
I saw a Podiatrist and eventually got some Orthotics that were made to fit into a good pair of leather shoes that have got good support. These are special shoes that have a removable innersole to fit in Orthotics. I also wear shoes that already have an Ortho supports in them. A good Podiatrist will tell you what sort of shoes you need and where to find them.
I don't know if you have Croc brand thongs or those Croc ugly sandles but they are spongie and give the feet some cushioning. The cheapie replicas are not the same unless you find a brand that is thick and spongie. I find them good to slip on quickly as going barefoot makes my feet worse. I don't have much of the fat pad under the ball of my feet. I keep a pair beside my bed so I immediately put something as soon as I get up as slippers don't usually have much support or the innersoles.
Foot exercises doing circles clock wise and anti clockwise and up and down. Roll your foot over a hard ball about the size of tennis ball size but smooth and solid. Rolling your feet over a bottle of iced or frozen water can help. Alternate from ice to a warm foot bath then if you can get someone to massage your feet with a fine oil like almond or coconut you can add some lavender. Then use the stongest linnament you can find and if you know anyone with a horse linament get some of that, it might make your eyes water but it might alo help. If not find one with that has Methyl Salicylate in it. I think the Salicylate is key as it is the same ingrediant that is in Asprin but your rubbing it in to where it hurts.. I have done all this and it has helped for a while and in different degrees. Some days are worse than others.
I don't want to scare you, but I have brought myself a cheapie wheelchair on e-bay. I haven't used it yet as it was delivered with flat tyres. I plan on using it when I am with someone and go to a shopping mall or other places where I need to walk around. I have gone way past being able to wander around on my feet as that has become impossible even with the aid of stick for me. Sometimes you just have to do things we don't like even when we know they will help us out. I hope you don't have to go to this exteme like me but if you do, try and buy one that is lightweight as I don't know how I am going to get the wheel chair in and out of my car without someone helping me. I have a Hatchback and it will go in, so if you have to buy one put more thought into it than I did.
Don't let yourself get too down, get help if you feel you are depressed as that needs to be treated and you don't need that on top of what you already have. I get down and wonder how bad am I going to get before I really don't want to go on. It doesn't last because I don't want to think about that day. The will to live is so much stronger and I find myself thinking about what I can do and try next and while ever there is another option, it keeps me going. Just knowing that I am not the only one and there others who do understand and who will support me helps so much.
You haven't run out of options yet, so hang in there, tommorrow may be a better day and if not maybe the next day.
Thanks for all the suggestions Bella, for the fasciitis. I have had too many cortisone shots in my feet to count, phys therapy, massage therapy, strassberg sock, tennis ball, golf ball, frzn water bottles, dansko shoes, birkenstock, orthotics, asic tennis shoes with orthotic, never walking barefoot, foot exercises, foot rest, staying off my feet, crutches, creams, gels, ointments, you name it. I am on another solumedrol pack. Mobic for the inflammation. Tramadol for the pain. God bless.
HI Michelle. I had similar problems after 4 months on enbrel. The solution for me has been a high dose of prednisone for 6 weeks and then reducing that down to a regular 5 mg dose with Enbrel. (no side effects at this dose) The prednisone seems to help the Enbrel cope with flares. Occasionally I still go up to 10mg for a couple of weeks if a flare seems to be trying to break through but overall I have been the best I have been for 30 years. I can even walk barefoot on flat surfaces! Good luck
I bought inserts for my sneakers which are better than nothing at all. The only thing I can wear on my feet are flip flops, sandals and suede clogs from a company called Fitflops. They are pricey but I got the clogs as a Christmas present. I have ;plantar fasciitis and they are the only shoes I can walk in. They are specially made for us who have PsA
It sounds like you have given enbrel a long enough run and your rheumatologist needs to try something else. Enbrel and humira did not work for me. after 3 months trying each med we kept up hope and tried a different med. itâs frustrating to not walk, my feet still hurt occasionallyq and before Remicade I had days that I was unable to walk, use my arms or even use my jaw. I had p f surgery a couple years back, which then turned into tarsal tunnel surgery. Iâve also had carpal tunnel in both hands, ulnar nerve transpositions in both arms, wrist carpal tunnel in one hand, the list goes on, and Iâm only 30! With the severity of your pain Iâm surprised your doctor has not spoken to you about other options. But I would mention it at your next appointment. Good luck with everything
Can't help you with the wisdom (hehe) but can offer some encouragement! This PsA is weird in that it affects us all at least a little bit differently. I've been on Humira for the same amount of time and although it started off miraculous it's now just keeping me afloat... but still am in a fair amount of pain and my energy level is thumbs down. I'm hopeful that my doc will keep working hard to come up with the best possible med combo for me and so that way of thinking gets me through...
I tall myself that although I'm not the picture of health I'm still in the game and am far better off than many other folks who face worse things day after day.
Wow everyoneâs situation sounds just like my experience just hang in there! Itâs not easy but I found this is something that works for me âŚcheck this link out its an interview I did with culture mag.
I have no words of wisdom, but I am very sorry for what you are going through. I, too, have plantar fasciitis and walk like Frankenstein. I went to a podatrist and got orthodics and they are helping. Dr. also told me I need to stretch my tendons in my feet by using a towel and placing the center of the towel on the ball of my foot and take the ends of the towel and pull. You can also stand on the ball of your foot on a stair and gently lower your heel.
Please don't give up. I know it's hard to keep going, but we have to. I keep going because my loved ones need me and I don't want to let them down. There has to be something out there that's going to help us. We have to be strong.
Did you doctor look to see if you had a bone spur. A few years back, the doctors said I had plantar fasciitis and I walked around like a wreck. Still hurting after all PT, boot etc. Went back and demanded a CT and they noticed a bone spur when my hear and arch come together. I had that removed, one in year foot, six months apart and that has helped. It is worth a look.
My mom though is suffering right now with plantar fasciitis, she has no autoimmune issues healthy as a horse, so it is not always related to the disease.
One thing I have found is that you do not want a doctor to group our disease with others and not look at the root of the problem.
Allan, I fear steroids for long term, but am on a medrol pack right now. 10 mg x 3 days, 7.5 mg x 3 days, etc. I can't say I feel much better. I am at high risk for osteoporosis, and need my bone density to be as good as I can get it. Weight bearing exercise is the #1 way to keep it good, and I can't do that. I am so happy that it's worked for you. Thank you for the suggestion. Maybe it will be an option in the future for me.
Lucia, I am going to look into the shoes you mention. Flip flops are the worst shoes for me thus far, but I bought 2 or 3 orthotic flip flops on sale a couple of months ago. I will give them a try when summer hits.
Leahdc, I am wondering the same thing about the Enbrel. My dr. told me 6 months is the deciding time. I don't know if Remicade infusion is feasible financially. If I have to go to the hospital for the infusion, I will be paying thousands of dollars. My spouse is a RN, I don't know if he could do it at home for me. We shall see what ends up working. I am sorry you've had to endure so many surgeries. I've had 18, mostly unrelated to each other, starting at age 14. It's no fun, is it?
We all know well the frustration with this disease, flares can come suddenly, and for no known action. As far as the biologic, they like to give it at least 6 months to fully work, some people react differently.
I went through four biologics before I got one to work, Embril was one of the first I tried. Hang in there, good luck!
Finding the right medication can be a very frustrating process, especially since there is no for-sure way to determine which one is going to work for an individual patient currently. I agree with Jon_sparky in that the biologics should still be given a chance to work before going back to the rheumy to cross the current one off the list and try the next one, and itâs important to remember that even if a medication is not working now, every step is a step closer to finding a treatment that will help! Itâs easier said than done, but weâre all rooting for you to hang on during this process. Donât give up!
As for disability, if youâre in the US then you may be eligible for help under the Family and Medical Leave Act (FMLA). Check with your employer first to see if they are covered for FMLA- there should be a poster hanging in the workplace outlining employee rights under the FMLA. If youâre requesting medical leave for PsA, youâre likely going to be clicking the link on the FORMS page that says âWH-380-E Certification of Health Care Provider for Employeeâs Serious Health Conditionâ for you, your employer, and your rheumatologist to fill out. FMLA provides you with a chance to take medical leave from work (albeit unpaid) without risking loss of your job
FMLA Information poster (note the requirements for eligibility!):
It may be scary to request medical leave from your FMLA covered employer, but it is also important to take the time to rest and recover when you need it (the 12 weeks does not have to be in one continuous block, FMLA can also cover absences due to flare-ups or reduced schedules!). Thereâs no shame in taking care of your health and wellbeing, know your rights!
