Well, it has been four years since I diagnosed, and fortunately, I didn’t have to go for years before they figured out what it was.
I have been through Otezzla, Enbrel, Cosentyx, and now Humira. I read about everyone having joint issues where they degenerate and then about the enthesitis. I’m not sure that the joint/bone is my biggest problem. My major source of pain is around the joint and in the muscles.
Today, I am home from work again because of the muscle pain. I have been unable to sleep for two nights becasue of my legs and arms. My thighes and calves hurt badly as well as my biceps. My legs and arms are so stiff and sore in the muscles.
I wonder often if I have some other diseases because everything you read about PsA is all about the joints and deteration. Maybe I could understand bone pain from the joints, but I am having a hard time accepting all this muscle pain. I guess I worry it is something more sinister, but what?
It seems there is two types of PsA. Joint and bone issues, then tendon and muscle issues, or for some, both.
I am feeling little relief from the muscle pain. Oxy and Robaxin only do so much without being stoned all the time. I am getting to a point that I don’t want to move. I don’t want to go to work. I am getting to a point of no longer trying.
My doctor is ready to disable me, but I don’t want that either.
Sorry, just feeling sorry for myself. Wishing it would all get better somehow. I’m holding out in hopes on the Humira.
I do not find that the biologics help much with the muscle pain. I’m not even sure if it is related to the PSA or the Hashimotos, but that was one of my earliest symptoms: bouts of excruciating muscle spasms and pain that would pop up unexpectedly in different parts of my body for no apparent reason.
What didn’t work:
I was put on such high doses of prednisone and muscle relaxant that I couldn’t sleep or hold a glass but the meds did little to stop the muscle spasms and pain.
Painkillers: Only dulled pain and helped with sleep some but did not stop spasms and I was unable to function due to sedation
Things that I have tried that actually seem to work:
Acutely during muscle flare:
Soaking in Epsom salt baths as hot as I can stand
Gentle stretching
Therapeutic deep tissue massage by a pro guy who works on the trigger points - It is painful during and the next day I’m so sore but I can move again
Preventative:
Mineral supplements. I take a multivitamin that contains zinc, potassium, magnesium and calcium. This is just my theory no science to back it up but I think the autoimmune process somehow depletes our bodies of these minerals. But I notice that if I stop taking my vitamin after a few days the muscle spasms come back again.
Gentle stretching and exercise like walking, swimming, tai chi
Preventative massage twice per month or as often as I can afford it.
I know you struggle with this disease and that you battle on very stoically despite ongoing and quite disabling symptoms.
I too would worry that there is something else going on. Though perhaps you shouldn’t worry too much about any possible ‘something else’ being especially sinister seeing as the more puzzling symptoms are fairly long-standing.
Do you have fibro? I could check your past posts …
I was recently diagnosed with Ehlers Danlos Hypermobility type on the back of my sons diagnosis of same. As it’s genetic, his rheumy asked to examine me and told me I have it too. In my case, though perhaps not his, it would seem to be fairly mild. Yet it explains a lot of things for me. Not suggesting you have that (though it may be worth noting that some experience a ‘stiff’ stage in later life) but my point is that nobody went looking before … I have PsA and that was quite enough to explain most symptoms, especially as the effects vary so. Perhaps you do need to present yourself to your doctors with a very clear request for a fresh assessment.
I take potassium and mag and calcium regularly because I drink a lot of water. If I don’t my lytes get all messed up. I’ll add zinc and up my doses for a week or two and see what happens.
I have thought about massage, or PT, but know if I could stand the pressure or stretching. Probably one of those danged if you do, danged if you don’t things.
I did tai chi for a year, loved it, then one knee went bad and I had to give it up. Also, the cramping in my thighs made it hard.
`I frequently have muscle pain and cramping. Sometimes I take muscle relaxers when necessary. It helped some. As far as I understand it why would muscles and ligaments be not affected by psa? It is not just the joints that hurt me and it would be hard to convince me it is not related to this disease some way. If it is not psa then it seems to me likely that some other comorbidity is in play. That is why I have a hard time believing if a drug is working or not.
I mean psa is known to cause systemic inflammation and it sometimes attacks organs right? Then why can it not inflame muscles and tendons? On another point the skin is an organ and psoriasis inflames the skin. The immune system is misbehaving and it is having far reaching affects. The immune system is involved with every aspect of disease.
I think it’s ok to feel sorry for yourself. It’s been four years and you’re still struggling. I understand some of what you’re dealing with as my diagnosis was 3 1/2 years ago and I’m still battling with unmanaged pain. I’m on my third biologic (without counting the DMARDs I’ve burned through). I remember when I was diagnosed, I thought, ‘great, now they can give me some relief’. but it’s just been short periods of relief and I still don’t know how to best keep myself off of disability. I always feel like I’m a bad month away from being unable to work.
I am rather confident of my PSA diagnosis because of the gnawing sacroiliac pain I’ve had for years. But like you I sometimes wonder about the other pains. I often have pains about two inches from various joints (elbows, shoulders, ankles, knees). They are asymmetrical and seem to increase in cold weather, particularly cold humid weather, which lead me to think it’s related.
The drugs I’ve been on have generally reduced my inflammatory markers (until the bios failed) and they appear to be preventing joint damage (per x-rays). As I don’t do pain management outside of acupuncture, massage, and rubs, the pain can be exhausting over time. It takes a while to find the right massage type and therapist. I haven’t yet found a local practitioner that is right for me but I have had some good relief with a hybrid style that is between deep tissue and Swedish. I don’t handle pain meds well at all so I’m always looking for some other way to get relief. Hang in there somehow!
I went for years with muscle tension, the dumb doctors would just call it a muscle spasm and send me on my way, I would ask them, “does a muscle spasm last for 40 years?” I first got help from Plaquinel antimalarial, as the Rheumy thought it was SLE Lupus, this worked great for about two years, until the dumb doctors took me off it, saying it was not good for PsA, I explained that it was helping… Now Remicade is taking away a lot of the muscle spasms, but not the joint pain… I think inflammation can make the muscles spasm.
Yours does sound like the illusive Fibromyalgia…
I have considered it being Fibro, though I don’t fit much of the symptom profile. I think there is so much they do not know about PsA that it could be anything.
I have decided to cut way back on the pain pills becasue they don’t help the muscle pain much at all, and that is the bulk of my pain. I am going to increase the CBD oil and see what happens. I’ll let everyone know.
Update - I have decided to stop the Oxy for pain totally. It didn’t seem to help the bad muscle pain anyway and it was taking more to do less. I am using what I know from my hypnosis career to deal with the pain. Also, I think I get a better feeling for how well the biologics, now Humira, are helping if I am not chemically masking the pain. Also, the pain meds and muscle relaxers were beginning to eat away at my stomach. That, along with the stress from pain was causing an ulcer to bleed.
I can’t take but a very limited amount of NSAIDs, which is what everything proposes instead of opioids. They cause arrhythmia in me. I’ll keep experimenting with CBD oil and anything else. I’ll keep us posted if I find anything new.
I am taking a week soon to attend another training series on Advanced Pain Management with Hypnosis I was invited to attend. I hope to eventually get back to seeing people and treating them with hypnosis, especially for pain.
Just a side note, there are some good self-hypnosis CDs available for pain management if anyone is interested. I don’t want to give anyone a plug or recommendation, but the man that has taught me pain management with hypnosis has some at a reasonable price.
I know exactly what you mean. It’s not a popular approach but I find it limits the number of factors I have to consider and that works for me.
There again I do not experience regular high levels of pain, so I hope the advanced pain management course helps helps, even though you are attending as a trainer (I think that’s what you’re saying).