When will I walk and what to do next?

There is more history in my profile, but my serious PsA flares just began last August and the first one wasn’t that bad (I thought it was at the time, but subsequent flares redefined my concept of pain). The second one was the worst pain of my life, which is so hard to convey to people. Even when I tell them that it’s worse than when I had to have oral surgery without anesthesia, I don’t think they really get it. Anyway, I have found that what seems to be the case is that after 4 days of a cortisone shot, I get some relief, need a second cortisone shot, and then get so much better that I can’t hardly tell I was ever in pain. However, the flares are getting closer and closer together and now that I know what it is (was diagnosed PsA by dermatologist just last week after having been passed around to different orthopedists (the last, smartest one, asked, “You don’t have psoriasis, do you?”)), I know that my treatment regimen will be different.

Anyway, my dermatologist wants to try to get me off of some of these medications (including cortisone) I’m taking for other things, as they are countless, see how much it helps, and get me to a rheumatologist. I have an appointment to go back and see her in 3 weeks and she’s out of town until at least Tuesday.

As luck would have it, on Friday afternoon my left leg flared to the point of, “Sorry Shawna, no walking until further notice”. So I’m stuck in bed, writhing in pain, not knowing when I’ll walk again. I’m thinking I’ll have to go get another Cortisone shot, because even four days is about more than I could even imagine taking of this, but not even sure how I will get to the doctor.

Also, do these symptoms seem about right? From what I read, it seems like just about anything painful can be right when it comes to PsA:

For two weeks I had a backache that got sharper and sharper with intermittent spasms. It is probably still hurting, but is masked by the hip and leg. The hip hurts, but also pales in comparison to the leg this time. The pelvis, which often feels like it has a knife in it, is not as painful this time but also hurts. The strangest thing this time is that the pain is down the back of my leg, which normally doesn’t happen and feels like my calf, back of my thigh, and even buttock are in perpetual cramps. Even the back of my ankle hurts. My toes are kind of tingly. The leg won’t bear weight, so I use a cane that has 4 legs on it to hobble to the bathroom next door over and my husband has to get everything else for me. Thank God for him.

But this clearly can’t continue. Will it get better without a cortisone shot? How long do biologics take to work? What do people do when they can’t walk?

Gosh poor you. It’s always so frightening when PsA hits you like a truck as it appears to be doing to you.

You need an urgent referral to a rheumatologist so you can get a grip on what’s happening. Taking a prednisolone course by tablets might help more than targeted joint shots that you’re on presently. Initially it was only them who got me capable of walking again. And it’s not great to have persistent joints shots like you’re doing.

The drug therapy usually started by DMARDS can take some time to work as in a few weeks. I know in the US biologics can be started sooner but much depends on the attitude of your insurer. They do work faster. But first off you need a rheumatologist to at least examine you coherently, take blood tests and see what’s going on.

PsA pain can run along tendons hence the sort of issues you’re describing in your leg and ankle. So first off get some heat and cold onto the bits that hurt the most. Applying heat for 5 mins then swtiching to cold for 5 mintes and repeat for say 20 minutes can reduce the intensity. And then do it all again a couple of hours later. Epsom bath salts and/or magnesium sprays can help too. What pain killers are you on? Some ibrufen (spelling?) might help a little too. Think it’s Tynenol in the US. Can’t you just call your GP to help instead of waiting for your dermatologist?

Most of us do all get walking again too. Big cyber hugs for now but get that urgent referral to a rheumatologist going as fast as you can.

2 Likes

I really hope your doctors will have you started on some actual PsA drugs and not just symptom management soon!

And like poo said try to see a reumatologist and make sure they know how truly urgent it is!

1 Like

Thanks for your quick response, Poo. I intend to ask my dermatologist for a rheumy as quick as possible, as soon as she gets back. I need to call my GP tomorrow. I called for an appointment last week, but they said I couldn’t get in for a month. I know the nurse could get me in sooner. It really sucks that this happened on a Friday afternoon, right after all the doctors closed, of course. I’ve taken steroid packs before, but they couldn’t even touch it. Right now, actually for a long time, I’ve been taking 3 Advil (ibuprofen) plus 2 extra-strength Tylenol (acetaminophen), which is what several doctors have recommended. I can’t tell that it does any good, though. Can’t take any opioids, which I’m sure is for the best anyway. I’ve used some Aspercreme with lidocaine topical, which sometimes gives some relief, and at other times can’t touch it. Last night, I took an Epsom salt bath, which felt good while I was in it, but the pain came back as soon as I got out. I’m going to keep trying that, too though.

I’ve done the heat and cold, but when it’s at its worst, it hurts for ice and/or heat packs to even touch it. Has anyone experienced that?

I know I shouldn’t get more cortisone shots, but this would be the last one, as I know my treatment will be different after this, and I really don’t think I could take more than 4 days more of this pain and survive it. At least I know from my MRIs that there has not yet been a whole lot of damage that they can detect.

Hi dartdancer. As I was reading your comments (I haven’t looked at your profile) I was thinking you need an MRI of your lumbar spine and SI joints. That unbearable pain through your hip and down your leg sounds like a disc pressing on your spinal cord. But, you mentioned you had MRIs that showed nothing, so now I’m really confused! I had pain like that when I had a disc out, and I’m really lucky rest and a lot of pain meds (same as you’re taking) got me over it and apparently the disc slid back into place. At the time it happened, nothing relieved the pain much—the huge doses of ibuprofen and Tylenol took the edge off—but it was the worst, most relentless pain I’ve ever experienced.
I’m lucky the pain went away, but since then I haven’t lifted anything more than 25 lbs. and I’m really careful. On top of that, my recent examinations showed that I have spinal stenosis (which wasn’t on the MRI when I had the terrible back pain, so I’m pretty sure it’s a result of it). That causes my legs to be very weak and I can’t do any extended walking at all.
If you haven’t yet, I’d get an MRI of your back and start working on healing it. I did it without surgery. There are mild exercises you can start if it is a disc out…it’s a slow and careful process, but if it’s your back, it is possible to fix it w/o surgery! Good luck! The pain you describe makes me cringe! :persevere:

I can relate to this SO much. When I had my first very severe flare last September, I remember crying every time I saw the trailer for “Stronger” (the movie about the guy who gets his legs blown off in the Boston Marathon bombing) because I could relate to the pain as both my knees were absolutely EXCRUCIATING. I’m not sure anyone who hasn’t dealt with this will ever really understand just how bad the pain is, but just know that you’re not crazy!

As for the pain, the ONLY thing that helped me was getting into a rheumatologist who prescribed daily prednisone. This was after weeks of (like you) being bounced around from different orthopedics until finally one of them realized it was autoimmune.

I hope that you’re able to get in to see a rheumatologist ASAP. In the meantime, I found some relief with regular icing (like icing affected areas every few hours) and 600 mg ibuprofen every 4-6 hours. It didn’t make me feel normal, but it at least took some of the edge off. I also hobbled around on crutches (just to take some of the weight off my knees/ankles) for a while and that at least got me somewhat mobile while I waited to see a rheumatologist.

Thank you all so much for all of the support and advice! I already feel less alone and like I have some things to try.

I’ve just got to figure out a way to be mobile, though. I did go ahead and go get that cortisone shot today, because there’s just no way I could have handled this anymore than four additional days. Fortunately, that Ortho office is only about 3 blocks away. Somehow, that four-legged cane got me to my car, through an excruciating amount of pain, and from my car, parked by miracle, right in front of the office, to a wheelchair just inside the door. My husband was able to come get me at lunch time. But what will happen if I have another flare or if this shot doesn’t work? Other than that trip, which I had to do, the only place (other than the bathroom) I’ve been since Friday afternoon is to the kitchen once and that about killed me. So scary.

In response to Grandma J’s question about an MRI, I have had 3 recent MRIs and 1 a couple of years ago, of my neck, which showed essentially nothing at the time. The three recent ones were of each hip, and of the lumbar spine. The hips showed slight bursitis and degeneration, and the ortho said that for my age, they looked really good. The lower back MRI looked rather ominous to me, but according to my friend who is a physical therapist, and the ortho who analyzed it, there’s nothing on it that is serious or atypical for someone my age.
Apparently, 57 year olds are supposed to have bulging discs, degeneration, stenosis, nerve root abutment, and Grade 1 slipped discs. Normal or not, the course of treatment will be the same. I’m not having surgery, so whatever my new rheumatologist tells me will be where my future takes me. I’m expecting and from what I’ve learned, rather hoping for PT and biologics.

I just take so many other medications that my doctors really want me to get off of/reduce any of those possible first. I take 3 meds for depression, meds for high blood pressure, cholesterol, acid reflux, hyperinsulinemia, I take Citrucel, Miralax, Black Cohash for hot flashes, 81 mg. Aspirin. I also take things that are supposed to be very helpful, like probiotics and liquid omega-3 oil and Juice Plus (supplements made solely from organic fruits and vegetables).
*(Should I be starting a new post on this meds issue? I’ve never spent much time in online groups.).

@Grandma_J
This flare is very much like a pinched nerve/back thing, and I think there must be some of that going on. My last four flares were very different. They involved my hips and front of my thighs, even more painful, if that is possible, but less immobilizing. Prior to that, mostly neck pain.

I thought I should ask, are you taking a statin??? Because, if so, it could be part of your problem, too. After experiencing terrible muscle pain from two different statins, my doctors determined I can not take them. I was on Crestor for about 15 months following a stent placement in August of 2016 and it caused me excruciating leg pain and depression. Now I’m off the statin and taking Fenofibrate instead—and it’s keeping my LDL and triglycerides down just fine. And I don’t have “crying spells” anymore!
Boy, I hope you get some answers soon! It’s so scary to be unable to move. I remember that all too well, and lately every morning when I get out of bed I start out very stiff and I have to move with caution because I feel like my back is in the verge of going out again. :worried:

Hi @Grandma_J,
Thanks for telling me! Even though I only take half a dose, I’m pulling the Lipitor pills out of my pill boxes right now! (I hope my numbers are okay when I get them checked soon.) I’m calling the GP this AM. Please gently do your PT for your back. I hope your back gets strong again! My brother has been in and out of wheel chairs all of his life with horrible back problems. His radiologist in CA said that he has the worst stenosis (literally) he has ever seen. But anyway, my brother says to touch your toes in the morning, very first thing, and hold it for at least 30 seconds. Walk with your shoulders back, stomach tucked (which we all know), and walk with your feet ever so slightly pidgeon toed (which I did not know :wink:).

That is the exact advice I was given from a doctor at the Mayo Clinic! I’m supposed to wear a tight corset-like thing, unless I can get in the habit of practicing better posture and keeping my stomach muscles tight.

I think there is some good advice on here. I wish I had the benefits of this forum earlier as I’ve been unable to properly walk now for years.