Hello, me again with another situation/question about PsA. In October I was experiencing an achie pain in my lower back at about the belt line (which I now know to be the SI joint). Now 8 months later I can hardly walk or stand when I get out of bed in the a.m., walk like an elderly man, and have excruciating-burning pain. Almost brings my wife to tears when she sees the pain that I'm in. Sometimes I have a hard time believing that a disease/condition can settle in that fast.
Have a lot of questions for my Rhuemy tomorrow (2nd visit). One important question for him is in regards to putting me on Humira. From our conversation during the last visit and from all that I've read since then, Humira lowers a persons immune system. For the last 6 or 7 years I've had numerous sinus/upper respiratory infections. Just this past January I even had my 1st run-in with pneumonia. I've actually been battling clogged nasal passages the past few days as I've been getting to know ya'll. Kinda thinking if I'm on Humira all winter they might as well stick me in a bubble!
So I would like to ask if PsA can or does settle in that fast and if anyone else had PsA hit them fast? Also has anyone who has been on Humira had more than usual infections that might point to a compromised immune system?
Hi BuickBoy. I'm a fibro person with possible PsA. Like you, I have that horrible burn and pain in my SI joint. It came on after a gym injury. YES, it was fast! And horrible. And has stayed with me, like my best friend, over the past 5 years. I found that sports massage helped the pain quite a bit. You need to find a person who is qualified to do real sports injury massages, and I would go for someone who does it all of the time, not someone who just does it on occasion. There is a HUGE difference between a fluffy massage and a sports injury massage. You WILL be sore after the sports injury massage but in a good way. And the relief is WONDERFUL. Only problem is it's expensive.
Another possible temporary fix is to have cortisone (I think that's what it is) injected into the SI join or the site causing the pain. A pain center does this and you need to bring an MRI so they can use it to (hopefully) find the site. Worked for me once, for about a month. Never did after that.
There is also some kind of gadget they can put into you that vibrates, I believe, and tricks your brain into not feeling the pain. I want to talk to the pain center about this option. If I try it and it works, I'll let you know, but it's not something that'll be immediate.
PS: I'm truly sorry you're experiencing this pain and have PsA. I can definitely empathize with your pain level. I only wish I had better suggestions for you. Ice and Ibuprofin have been my constant companions.
Make sure the Rheum knows this, I am COPD and on Enbrel, so you may still be starting the infusion. It is my understanding that if an infection comes, you go off the biologic to allow healing time. Good luck to you, wish you good things tomorrow.
And yes, it can be that fast! That is the reason for the infusion, to slow it down, but not the only reason.
It doesn't sound to me like PsA either...... Its sounds like an acute injury, blown disc, or even a bone spur (the spurs are PsA related and have a more PsA like name As you are beginning to fuse you may need a neuro consult. I'm sorry I haven't paid closer attention to your posts. If everything is clear a chiropractor may be able to help. Injections can too but........
Oh the infection thing.... There is lots of old info out there. The cancer thing is disproven. The incidence of serious infection is no higher than those not taking (they haven''t addressed non serious infection) You can't take live vaccines. If you have surgery you have to discontinue the meds for a while. A nasty cut or puncture, you should get some preventative Antibiotics. (IE running a screwdriver through your hand.....) Learn to work with work gloves. (that was a tough one for me)
There is a very special yuck for us taking the biologicals. Because we are suppresed we don't easily run a fever so bugs that we don't get those 24 hour bugs that run a quick fever and go away. We get that sick feeling you get BEFORE thr fever comes. It stays around a bit longer.
Avoid the EMG testing if you can (thats personal) If anyone wants to inject your spine make SURE its an anesthesiologist. They are the ONLY specialty that specializes in learning that procedure. You want to know you are numb before they poke around in there. Otherwis what you are experiencing NOW will seem like a hang nail.
Again it sounds like you have an ACUTE problem that needs treatment now.
I agree on the EMG, didn't give me enough info to/for anything, UNLESS another Doc, like GP or Rheum suggest,but caused plenty in a 'crash', and agree to the Anestheosiologist guided by x-ray IF you decide to do it.
For some reason I was NEVER numb enough for those PM injections, the blood curddling screams and my husband nearly ripping the hinges off the doors to get to me were enough to have them give me more to numb me, or more time to get numb, but didn't happen. In the end, I was worse out than I was when before they began, though it does help some.
Put your money where your Rheunatologist is, the hammering pain in my wrists was not from very slight carpal tunnel, is from Sjogrens (not just dry eyes and mouth), Raynaud's and PsA.
Thank you for the ideas (electric stimulator & epidural injections) I'm aware of both. 1st the Elec. Stim. this saga of my pain management goes back to my main source of pain prior to the PsA. In 2001+2002 I had 4 surgeries on my right wrist. The final surgery was a total fusion do to complete cartilage damage throughout the wrist. Dealt with RSD for 2 years post wrist surgery. In 2009 the RSD came back with a vengeance. 3 ER Morphine, 8 Percocet, 3 Flurbiprofin, and 2 Gabapentin is my daily meds to hold (some) pain at bay. I will not get the Elect. Stim. do to avoiding the knife at all costs.Plus family Dr. and PT gave the idea a thumbs down.
Now the injections. In Feb. this year I had 2 inj. into lumbar section of my spine. One in office inj. into SI joint and 3 inj. into SI joint under guided x-ray. Obviously no help. This is the one time during this journey that I got pissed off with the direction of my treatment. Before the 3rd inj. I asked the pain management Dr. if I might have Anklosing Spondilitis or some condition that's causing my symptoms. The Dr. said no he didn't think so. The 3rd inj. didn't help so I went to a Chiropractor that I trust and respect. After presenting to him results of my X-rays, 2 MRI's, and Bone Scan he said that he is going to refer me to a Rheumatologist because I might have Ank. Spod. or an arthritic condition that's causing inflammation of my spine. Needless to say I'm not returning to that Pain Manag. Dr. again.
Petunia Girl said:
Hi BuickBoy. I'm a fibro person with possible PsA. Like you, I have that horrible burn and pain in my SI joint. It came on after a gym injury. YES, it was fast! And horrible. And has stayed with me, like my best friend, over the past 5 years. I found that sports massage helped the pain quite a bit. You need to find a person who is qualified to do real sports injury massages, and I would go for someone who does it all of the time, not someone who just does it on occasion. There is a HUGE difference between a fluffy massage and a sports injury massage. You WILL be sore after the sports injury massage but in a good way. And the relief is WONDERFUL. Only problem is it's expensive.
Another possible temporary fix is to have cortisone (I think that's what it is) injected into the SI join or the site causing the pain. A pain center does this and you need to bring an MRI so they can use it to (hopefully) find the site. Worked for me once, for about a month. Never did after that.
There is also some kind of gadget they can put into you that vibrates, I believe, and tricks your brain into not feeling the pain. I want to talk to the pain center about this option. If I try it and it works, I'll let you know, but it's not something that'll be immediate.
Unfortunately it is just part of our hands on education! Before you go buy a tens, go to your Chiropractor, I do not respond well to tens, you may not either, he will be the one to trust with this, could save you some $!
OBTW My DC says I have RSD, tried to join a yahoo support group, but after the owner of the site couldn't review my application in 14 days, (not exactly the speed of light) it was denied, don't care to waste time and energy with them again, so will just wait for a BF group for that.
None of my Internists (Rheum is also one) think I have it. New info sent to me by the moderator of the BF lupus site, shows this could be from Sjogrens, or who knows, could really be RSD.
I've actually had the TENS since February. Not positive if it really helps that much, nothing really seems to help. Obviously because I'm still in pain ALL OF THE DAY LONG!!! Hoping and praying that Humira helps. I sure hope that you don't have RSD. Especially if you live in a cold climate during the winter. That pain is totally different type of pain. Sometimes it feels like a DEEP bone bruise, sometimes it feels like I just just fell hand first onto a floor of tacks, other times it just burns from wrist to tips of fingers. Can't mow the lawn or use a drill because vibrations hurt deep down to the center of the palm. The last EMG I had done the Dr. thought his machine was not working properly. There was no reading when the electrodes were placed on the palm. We're all to young for this! Thank you everyone for giving me a place to communicate with people who are experiencing PsA. I know of no one that has the disease. I must say that I am a very blessed and thankful man. My wife and kids have really stepped up to the plate and have taken care of me!
SK said:
Unfortunately it is just part of our hands on education! Before you go buy a tens, go to your Chiropractor, I do not respond well to tens, you may not either, he will be the one to trust with this, could save you some $!
Is this post directed to me, lamb? If so, not a blown disc (mild protrusion, not enough to cause problems say the docs), no mention from docs of an acute injury or bone spur...plus I've got all kinds of joint pains in elbows, knees, shoulders, fingers, jaws, etc. So yes, back pain could be something like an injury but that still doesn't explain all of these wonderful pains that all mostly came on at the same time.
tntlamb said:
It doesn't sound to me like PsA either...... Its sounds like an acute injury, blown disc, or even a bone spur (the spurs are PsA related and have a more PsA like name As you are beginning to fuse you may need a neuro consult. I'm sorry I haven't paid closer attention to your posts. If everything is clear a chiropractor may be able to help. Injections can too but........
I get the epidurals, pain mgmt ( anesthesiologists)..I've had nerve blocks, RFL ( radio frequency ablations)...in L4/5/S1..I don't get knocked out
They have helped, and chiro massage helps.
But first , have you had a spine MRI?...a chiro can even order one. But i have seen ortho/spine doc,, nuerologist, who does the fun EMG nerve testing, and a nuerosurgeon . Of course they are speaking a fusion with a cage, i refuse...I get by, but am in my 60's, and have DDD
I do have a custom back brace, for when the pain is real bad, spondylesthesis, ( slipped vertebrae)
yes write up all kinds of ??? for the rheummy tommorow, and let us know/take care
And your wife and daughter are very lucky to have you! Don't sell yourself short because you are ill. I am sorry your hands are so bad, hopefully medical science or our dear lab rats will find something to help you through this.
It's not considered the artic circle here in MD, but it is to me, I can walk outside when it's 80 degrees and have to come in for a sweatshirt!! A little colder than your average female!
I hope to God I don't have RSD either, DC said I have myofacial pain syndrome too, no one argued with that, just didn't say anything. So?
Just what are you taking for pain, perhaps nothing if you are going to work, not very safe working on opiates, or driving to get there! Time to ask Doc about SS disability, takes a while to get it.
Good to know regarding making sure you use an anesthesiologist for spine injections. Thanks for that info, lamb!
tntlamb said:
Oh the infection thing.... There is lots of old info out there. The cancer thing is disproven. The incidence of serious infection is no higher than those not taking (they haven''t addressed non serious infection) You can't take live vaccines. If you have surgery you have to discontinue the meds for a while. A nasty cut or puncture, you should get some preventative Antibiotics. (IE running a screwdriver through your hand.....) Learn to work with work gloves. (that was a tough one for me)
There is a very special yuck for us taking the biologicals. Because we are suppresed we don't easily run a fever so bugs that we don't get those 24 hour bugs that run a quick fever and go away. We get that sick feeling you get BEFORE thr fever comes. It stays around a bit longer.
Avoid the EMG testing if you can (thats personal) If anyone wants to inject your spine make SURE its an anesthesiologist. They are the ONLY specialty that specializes in learning that procedure. You want to know you are numb before they poke around in there. Otherwis what you are experiencing NOW will seem like a hang nail.
Again it sounds like you have an ACUTE problem that needs treatment now.
Oh sweet Jaysus! I think you just talked me out of getting another one!!!
SK said:
I agree on the EMG, didn't give me enough info to/for anything, UNLESS another Doc, like GP or Rheum suggest,but caused plenty in a 'crash', and agree to the Anestheosiologist guided by x-ray IF you decide to do it.
For some reason I was NEVER numb enough for those PM injections, the blood curddling screams and my husband nearly ripping the hinges off the doors to get to me were enough to have them give me more to numb me, or more time to get numb, but didn't happen. In the end, I was worse out than I was when before they began, though it does help some.
Put your money where your Rheunatologist is, the hammering pain in my wrists was not from very slight carpal tunnel, is from Sjogrens (not just dry eyes and mouth), Raynaud's and PsA.
Thank you for of all of you encouraging words. I'll tell you one thing for sure, it is refreshing to be having web conversations on a site were everyone is possitive, pleasent, friendly an encouraging to each other. I trully feel that this has helped me mentally hearing your stories, however I wish you all didn't have to carry this rock as well. Sometimes I wonder if some people think that I'm faking or that it's all in my head. My/our pain is real and we an all share our tales of woe ×√×
Thanks for the chat & have a good nite's sleep. Buick Boy out a here!
Sorry BuickBoy that you had such horrid results with your former surgeries. I had no idea that surgery could cause such misery and flares.
I don't blame you for your frustration with the injections. My pain mgmt doc. suggested that the pain might be coming from the arthritis farther up in my spine than the SI joint, so he'll try injecting up there. Did you have your shots at the Si joint only?
Going to a rheumie sounds like the best course of action, esp. if you do have anklosing spond. I hope he gives you some clear answers to this ugly problem.
Well it's another day, here we go again. At least I've already walked off the morn. pain and stiffness. Pet. I've actually had 2 shots into my lumbar spine back in Feb. I've already gone to the Rhuemy and presented to him the Dr. notes on all of my previous test, scans, and visits. Also gave 8 viles of blood. He diagnosed me as having PsA. Do to all of my pain he started me on Humira before my 2nd app. I see him tommorow a.m. for my follow up.
Hello BuickBoy. I totally feel your pain (literally). I had my first symptom (swollen red bruised ankles where I couldn't walk) in February of last year. I was on steroids for about 5 months (the only thing that would work) until they finally diagnosed me. As of now, it has progressed to my fingers, spine, and hips. It is really still painful. I have been on Humira for 8 months or so (with a few interruptions due to surgery, infections). The first time I was on it, I felt about 70% relief within 6 weeks, and then after the first time I had to stop and restart it was about 40%. Now, the 3rd time I had to stop and restart.....it's only about 10% relief. I'm adding Methotrexate (I put it off as long as I could) to the mix starting on Friday and I'm really pretty nervous but trying to stay positive. I guess I thought from the commercials it would be this miracle and with one shot I would be running through the field of grass......not so much! I had no idea it could progress so quickly or so painfully.