Foot issues with PMR/GCA?

[phebamom]

I have ha PMR/GCA at least a decade, probably longer. not diagnosed until 2017. 7 trips to Mayo clinic in Rochester, MN, US. For years I have had terrible foot problems, plantar fasciitis, tendonitis, etc. I am noticing foot problems flare when SED goes up. does any one have foot problems with this illness?

[phebamom]

PS. I am not much overweight, 5,9" at between 175 to 180. When my weight drops (2017 it was down to 155) does not seem to make a difference in foot issues.

[Oumaof2 in reply to phebamom]

Hi, I'm having feet issues.... Very sensitive soles and they get uncomfortably hot and a feeling of burning when covered in bed!.... I'm 71 dx PMR in February '18.... Currently at 6.5 Pred.... Does anyone else have this or similar?...

[PMRpro Ambassador in reply to Oumaof2]

I forgot to say before, the soles of my feet feel as if they have been sandpapered!!

[Oumaof2 in reply to PMRpro]

That about describes it! I live in Sketchers these days.... Thank you.... Hope your recovery is going smoothly... And OH also .. Lena 💐

[PMRpro Ambassador in reply to Oumaof2]

Sandals and trainers - non-wet and wet ...

[Oumaof2 in reply to PMRpro]

Sounds good 😊

[Soraya_PMR in reply to Oumaof2]

Skechers here too! Light, comfy and the perfect height heel. Can’t bear anything else now. 👟🥾🥿👠👡👢👞

[Oumaof2 in reply to Soraya_PMR]

👍😊

[PMRpro Ambassador]

I had very sore feet with PMR - felt as if I was walking on a mix of sharp pebbles mixed with shards of glass! And as if my feet were tightly bound up - like Chinese ladies feet used to be to keep them small. I could onl walk relatively comfortably in hiking shoes. I've heard several people say something similar - and a lot have identified with the walking on pebbles feeling.

[Hidden]

Yes I know the pebbles and footbound feeling. I tried to walk up a steep bank pre PMR DX and I was almost screaming with the pain. I ended up crawling and it was a good 15mins before I dared to start walking. When I get the PMR stiffness my feet are included.

[powerwalk]

Yes had very bad foot pain. Including the walking on stones pain. Awful.

[SheffieldJane]

Yes apart from flaring Psoriasis (on my feet only) my heels are often painful with the slight pressure of having them resting on a stool.

[Longtimer]

Not same as your problem, but Peripheral Neuropthy, blue, cold, painful toes, now both feet...

[whitefishbay]

I had plantar fasciitis before PMR and then extensor tendinitis which I still have (@ 5 years). My feet always hurt.

[Hellyowl]

I am GCA only and my feet are stiff in the mornings. I do the penguin walk first time I get out of bed. I am just getting rid of plantar fasciitis. I have had it for a year for first time in my life. Endocrinologist didn't specifically talk about my feet but asked if I had thigh pain too which I do and said it was the Pred. I change my shoes style frequently so I don't wear the same level all the time. I do wear good trainers ( ethical brands) for dog walking but I do also go out in heels. I put sports insoles in any shoes they will fit in to support arches and do stretching any time I am sat down. It keeps me moving but foot problems are miserable. Lady year I walked all summer in flip flops and I think that caused my problems to start.

[PinkertonCat]

Plantar fasciitis, itching, burning, tingling

[Zebedee44]

Hello Phebamom,

Two and a half years into my PMR journey and at 8mg, although I have not experienced the sandpaper or pebble effect I have for some months now had pains in the arch of both feet and lower legs so I have read this posting with interest.

I actually thought PMR did not effect the feet and my GP hasn't shown much interest, so I am trying to reduce the pain with arch supporting footwear. A winter of wearing wellies has probably brought it on, now I need supportive summer shoes so I will look at Sketchers, thank you for raising the subject.

[phebamom in reply to Zebedee44]

Just came home from seeing primary doc and ENT. I hawk out this nasty looking plug from my lungs several times a week. I have been doing it for years. Most doctors dismissed it the past, putting it down to sinus issues. My husband came up with the ideal of freezing them. I took them to the ENT this morning. He took one look and ordered a CT scan of lungs, called them mucous plugs, and said they are not normal. Will post results of lung ct when it comes back. Primary said foot and shoulder pain are the disease.

If my SED is up, (blood test this a.m.) will be going back on Actemra, but twice a month, not four times. Primary said is vital I stay on it. So if blood pressure goes up will manage with med, but must stay on Actemra. I have GCA/PMR real bad. Also, primary suspects lung issue is from the illness attacking my lungs. Will know more and post it next week. I have been short of breath for at least 15 years with no explanation until now. Finally, am seeing doctors who are savvy on this disease and are helping me realize most of my issues are from the disease and nothing I am doing wrong.

I am amazed at the response I have received on this post. We are not alone. We all have our stories. When we share them and find common ground it helps us all. This is a difficult illness to navigate from day to day.

Pheba

[phebamom in reply to phebamom]

Back on Actemra, CT scan next Tuesday, 10mg pred daily. Pred has done little to help. SED went from 23 in February to 81 3 weeks ago, down to 66 now after 3 weeks on 20 mg daily. Pred has just stopped working. Hopefully the Actemra can pick up the slack.

I wish I had some advise for the foot pain. After 18 years of dealing with it I finally realize the connection to the disease. I have had several prescription inserts in shoes, heel supports, foot wraps, pred shot in foot, and on and on, I taped feet for a while. It helps more than anything. Just You-Tube plantar fasciitis foot taping. I had surgery on left foot last October. Left foot still hurts when disease flares, so is the disease process.

[Twopies]

Around time of diagnosis I developed costochondritis in my foot--most painful thing ever--went to foot doc thinking my foot was broken. Research said when your hip gait is off (in my case, due to undiagnosed pmr), it can lead to this condition, as your footfall is uneven. I believe that to be the case for me. My foot has never healed and never will. My feet are sore a lot--like I've been wearing too tight shoes that I just took off.

[Noosat]

I do not have foot problems. I feel the discomfit/pain in hips, thighs, calves when walking (not all at once) I do find if I concentrate on "good" posture, I do better. That is walking erect with my abs pulled in, my hips over my feet and try to imagine I have a hook in the top of my head pulling me upward. Sounds carazy, but sometimes it works, just difficult to remember to do all tume

[Duffer55]

I also have been experiencing foot pain. It varies from day to day, foot to foot, sometimes both, also varies on where it hurts, some days like plantar fasciitis, sometimes balls of feet, sometimes ankles. It doesn’t matter if I am sitting or standing. It makes me limp around. I tried taking 1000 mg Tylenol with no relief. I’m currently at 12.5 mg Pred so took an extra 10 mg and the pain went down dramatically.