I’m sorry you guys but I need to rant. Again. I’m just as sick of this as you are, trust me! I yelled at my husband and asked him if I was without legs would I still be expected to do things for everybody? It seems like I’m worthless unless I’m helping somebody around here. I’m so xxxing sick of this back pain and nothing seems to help it. My boss asked me if I’ll go to a meeting for her next Tuesday. It’s a twice monthly appeals meeting (people appeal their campus parking citations). She hates going so lately she’s been making me go. It’s several blocks from our building. I said you’re kidding, right? But she wasn’t! Not only would I have to walk there but I’d need to walk up two flights of stairs to the meeting room. I told her I wasn’t coming to work next week if my back is still so bad. I’m gonna see if I can get another MRI, even though I had lumbar and SI joints MRI’d 4.5 months ago. My new insurance will probably cover it. Otherwise I think it’s just guesswork what to do to fix it. It’s definitely got to be fixed. I can take some pain but this is like having a migraine in my butt and down my leg and it’s not something I want to live with. I’m sorry, I know a lot of you are way disabled and in much more pain than me. But I don’t think people who don’t have PsA can even begin to know what we go through. I am extremely thankful that 95% of my PsA symptoms are gone. I couldn’t take PsA pain along with this back pain. So there is something I can be thankful for. And thank you guys for putting up with my always feeling sorry for myself.
Gentle hugs! It's difficult when we're trying to be gentle with ourselves and others seem to be clueless as to what we're going through and what we're capable of. I often forget that if I don't announce that I'm in pain at least three times a day to all those around me. They forget in hours. They also can't imagine the amount of pain I'm in every day. I find it useful to lay out for people I "work" (volunteer, that is) for, that "my doctor says" that I'm limited to x, y and z. For some reason, if the doctor "says" something, it sticks with people, but if it's just me "complaining," it doesn't.
Thanks, Nym. It is soooo true. They don’t want to hear me complain at all, so when I don’t say anything they think I’m all better. Then they’re all surprised when I mention I’m hurting like hell! My 2 nurse daughters are the most unsympathetic people–but it’s because nurses get tired of being around sick people and also because I’m their tough mom and they don’t want to see me weak or needy. I know it’s hard on them–they worry a lot.
I decided to spend another weekend doing nothing but laying on my heating pad. The house is quickly turning into a disaster and my husband doesn’t help at all–the mess will wait for me. I don’t like to ask our kids to help–they all have busy lives.
I’ve spent the last few hours doing variety puzzles–(crosswords, sudoku, etc.) and it helped keep my mind off my pain.
Gentle hugs to you, too! 
It’s so annoying isn’t it? My 16 year old daughter (fit as a fiddle and 5 feet 10) just got mad at me for not helping to carry in the huge bags of firewood! Considering I’m in my 4th month of swelling and pain in wrist, I would have thought she would have realized by now that I can’t use the bloody wrist!! Apparently not! If you don’t remind them every 2 minutes they completely erase it from their mind. I’m sick of being ill with things that people can’t see …
Grandma J, hi. I don't know about all the medications you take, but maybe taking an antiinflammatory medicine as a supplement could help with your back pain? You know my biggest problem is my SI, and I would go to the emergency room every month because of my back pain before my diagnosis. And I always figured it was either my scoliosis or my herniated disc. But guess what? The antiinflammatory helped with my back pain as well! I haven't had those horrible back pain episodes since my diagnosis. And I realized my back begins hurting almost at the same time with my SI. So my guess is, maybe my SI was inflamed for a year or so but the pain was at my lower back so I didn't realize it until it was at my buttock :) And maybe the inflammation of the SI irritates the back and causes the muscles to spasm more? If you remember, I was flaring last week, and when I took my antiinflammatory, the first pain to go away was my back. My SI is still not perfect but it is getting better as well.
Also, what helps with my back pain are these (since, you know, I've had them for more than 15 years now, and I've experimented a lot :) : if not too bad, I take a muscle relaxer before I go to bed. I do that for a couple of days, and if it gets better, it gets better. If it doesn't, then I go to the emergency room with tears and they give me a shot of muscle relaxers and pain killers, and usually one shot is enough. Hot showers give me some relief, but only for 15 minutes. I use voltaren gel as well, and it helps a lot, but not always. What really makes the pain go away are the shots. But of course, since I had this pain for 15 years, maybe the muscle relaxer pills are no longer working. And all these are of course the remedies for the muscle spasms. For the herniated disc, I have a really strong pain killer but it doesn't cause me as much trouble as the spasms.
:) I hear ya, Golfnut! My 23 year old complained to me last week that her apartment is a mess because I didn't keep my promise and help her do a major cleaning job. I said well sorry I'm in misery right now and not even able to clean my own house!
But, I was happy today when she told me she cleaned for 5 hours last evening. I knew she could do it if she was forced to! My husband was a little more understanding today, too--I told him I couldn't make supper cuz I can't stand up for more than a minute, so he picked up Burger King on his way home from work. It was a huge sacrifice for him because after a 12-hour workday he likes a home cooked meal or at least dinner at a nice restaurant.
I had lots if trouble with my wrists, but since I started Enbrel they're not painful at all and a lot of my strength has come back. Hope yours get better, too!
Golfnut said:
It's so annoying isn't it? My 16 year old daughter (fit as a fiddle and 5 feet 10) just got mad at me for not helping to carry in the huge bags of firewood! Considering I'm in my 4th month of swelling and pain in wrist, I would have thought she would have realized by now that I can't use the bloody wrist!! Apparently not! If you don't remind them every 2 minutes they completely erase it from their mind. I'm sick of being ill with things that people can't see .....
Yes, ladylazarus, I need to do something... First, I'm hoping for MRIs on my SIs and lumbar spine again. I want to be sure that we treat the right thing. PsA damage did show up on the MRI of my left SI joint 4 months ago, but at that time it wasn't the cause of the pain I was having because I also have a disc protrusion that was causing the pain to be in my right butt and right leg.
I know I should be taking some kind of pain med or muscle relaxer, but I'm almost more afraid of the pills than the pain--which sounds really crazy, I know. I was taking 2,400 mg of ibuprofen for a few days but it did absolutely nothing so I stopped that. I hear you about the tears. I get really weepy when the pain is intense and it doesn't let up for awhile. I never cried about the PsA pain all those years before I started Enbrel. There were days I almost broke down from the neuropathy in my feet or the pain at the base of my thumbs, but I wouldn't let myself. I guess now it's such a disappointment because I felt so good from Enbrel at first--the back pain sort of took me by surprise!
I just read some stuff online that gave me hope this can get better without surgery--except if it's my SI--that could require some kind of intervention. Have they mentioned that to you?
I've been doing the McKenzie extension exercises and heating pad and cold packs. Hot baths feel good because I can't stand long enough for a shower.
You've had such a long history of back and SI troubles for such a young person, I can't imagine how difficult that must be for you. IDK if anyone could ever get used to that kind of pain. :(
ladylazarus said:
Grandma J, hi. I don't know about all the medications you take, but maybe taking an antiinflammatory medicine as a supplement could help with your back pain? You know my biggest problem is my SI, and I would go to the emergency room every month because of my back pain before my diagnosis. And I always figured it was either my scoliosis or my herniated disc. But guess what? The antiinflammatory helped with my back pain as well! I haven't had those horrible back pain episodes since my diagnosis. And I realized my back begins hurting almost at the same time with my SI. So my guess is, maybe my SI was inflamed for a year or so but the pain was at my lower back so I didn't realize it until it was at my buttock :) And maybe the inflammation of the SI irritates the back and causes the muscles to spasm more? If you remember, I was flaring last week, and when I took my antiinflammatory, the first pain to go away was my back. My SI is still not perfect but it is getting better as well.
Also, what helps with my back pain are these (since, you know, I've had them for more than 15 years now, and I've experimented a lot :) : if not too bad, I take a muscle relaxer before I go to bed. I do that for a couple of days, and if it gets better, it gets better. If it doesn't, then I go to the emergency room with tears and they give me a shot of muscle relaxers and pain killers, and usually one shot is enough. Hot showers give me some relief, but only for 15 minutes. I use voltaren gel as well, and it helps a lot, but not always. What really makes the pain go away are the shots. But of course, since I had this pain for 15 years, maybe the muscle relaxer pills are no longer working. And all these are of course the remedies for the muscle spasms. For the herniated disc, I have a really strong pain killer but it doesn't cause me as much trouble as the spasms.
My mom's really afraid of the pills as well :) especially the muscle relaxers. She panics every time she has to take them (she says her heart beats really hard when she takes them, I think it's because she's afraid but I don't push her to take them because it could be a side effect as well) and most of the time she doesn't. She has a very, very slight scoliosis as well, but not like mine, only 5 degrees which is almost nothing. I, on the other hand, don't know what I would do without them. I can never take muscle relaxers three times a day as I was prescribed so many times, but I only take them right before I go to bed. And it is probably a good thing that I do, because my pt told me that it's a vicious cycle: the muscle spasms cause pain, the pain causes the muscles to spasm more, this causes more pain and thus more spasms :D
About the surgical options though - I'm really scared about needing a surgery!!!! :D I think I could never do it. Be unconscious while someone opens my back and pokes around it :D I'm thankful that my scoliosis is far from the point that it should be treated surgically (I think they begin thinking about surgery when it's over 35 degrees, yet mine is only 15 degrees). But the herniated disc scares me lot. Every time I had those pain episodes I though this is it, they will want surgery now and I was really, really scared. I always feared being disabled, and the diagnosis of PsA isn't helping with this fear very much :)
But I know the pain and discomfort you're in now. Whether it is caused by spasms, herniated discs or inflammation (which I'm beginning to think had a huge part on those horrible pain episodes I got for two years), you never get used to back pain. It is a kind of pain that makes your whole body nonfunctional. It doesn't matter if your ankles and knees are good - you can't walk or stand straight or do housework etc etc if you have back pain. It makes all the other "good" parts kind of useless :)
I had back surgery twice when I was 25 years old, for herniated disks that were causing major nerve problems. When I was brought up to my room post surgery the first time, I was told to move myself onto the bed, from the gurney. I was in horror! How could I possibly move! The answer was that I could and I did. My point? I came through it all in one piece. Yes, it really sucked. But it was better than peeing my pants for the rest of my life, which is where I was headed.
Ladylazarus, hi and thanks again. If this is my SI joint, I can see myself getting surgery if absolutely nothing else helps. I can't live like this. It might take a couple weeks before I can get an MRI because I can only go in the larger MRI tube (claustrophobia) and there's only one of them in our town.
I just did some reading on discs--bulging, protruding and herniated, and according to some experts, surgery is not necessary. My husband had two fusions--one in his neck about 25 years ago and one in his lumbar spine about 10 years ago. His neck turned out perfect--no pain since--but the lumbar one has given him trouble continually. That's one good reason why I wouldn't have surgery on a herniated disc.
I hear you about the cycle of disc/SI pain/muscle spasms, etc. This feels like a bad toothache or migraine, or when the dentist hits a nerve unexpectedly-only over and over again. It's continuous, but sort of in waves to different degrees and even when I'm laying down completely still it can be really strong pain--the kind that makes you gasp. I'm sure you know the feeling--NOT pleasant!!!! I just don't have much faith in pills--I worry more about SEs and other problems down the road. For instance, Nortriptyline was great for my neuropathy, and I got to the point of desperation before taking that, but I'm pretty sure it's what caused the vitreous detachment to happen so suddenly in my eyes. I'm glad I was able to quit taking it. You are right about feeling useless with this kind of pain--I guess a person has to figure out ways of coping with it. You seem to be doing fairly well with getting symptom relief and coming to grips with the ongoing pain--I hope you continue to find even more ways (meds or whatever) to get you feeling better! I don't think I would have been as strong as you seem to be had I been so young when this all came about! Keep up the fighting spirit!
Hi Stoney. I guess there's no choice if the back pain affects your bowel and bladder control. I've read about that, and hope mine never gets to that point. Some of my husband's coworkers had that happen after disc surgery. I think they did pt to learn how to use muscles in that area that were damaged from the surgery.
Idk how many years ago you had your surgery. I'm wondering if it's more recent practice not to do surgeries until all else fails? My husband didn't do much pt when he had his neck and lumbar pain. I thought he opted for surgery too quickly--especially for his lumbar spine. I think if he had it to do over again, he'd try other treatments and pt first. He has the swayback posture and a lot of extra weight in his stomach (like 100 lbs), and I think if he'd fix that, his back would feel a lot better.
Stoney said:
I had back surgery twice when I was 25 years old, for herniated disks that were causing major nerve problems. When I was brought up to my room post surgery the first time, I was told to move myself onto the bed, from the gurney. I was in horror! How could I possibly move! The answer was that I could and I did. My point? I came through it all in one piece. Yes, it really sucked. But it was better than peeing my pants for the rest of my life, which is where I was headed.
I know what you mean Stoney. Mainly that's what I'm afraid of, being rushed to the surgery because I lost control of stuff... But of course, if it comes to that I would have to have the surgery. And I'm glad everything worked out for you with the surgery.
Grandma J I don't have much information but I think back surgeries may be less invasive now. I don't really know. And about the pain, sometimes I think it has become a friend of mine, you know, the kind of friend whom you don't particularly look for or need in your life, but somehow they are present in your life, and you know everything about them - and you don't know why they are there and how you have gotten so close! I'm learning to differentiate between the inflammation pain and muscle spasms, which is a good thing I think, because I can take action accordingly. Not knowing which was which was definitely worse. And being able to tell them apart has given me some kind of confidence. The next step is to get them under control. And -ahem- I'm a pro at that :D
I know what you mean. People really don't know the continual pain we go through with PsA. I always say the word " arthritis" is misleading when it comes to PsA. So much of my pain in not necessarily in my joints but my tendons and general aches in other places.
I try not to " over do it " myself but sometimes I get tired of waiting for my son to be around to help me.
It is a constant learning experience--learning what we can and can't do, what helps each of our different symptoms and trying to ignore symptoms sometimes when life begs us to do that.
Yesterday morning I woke up with no pain after about 15 hours in bed alternating between ice packs and the heating pad. But within 30 seconds of sitting up I could feel the sciatic nerve pain starting and it intensified after I stood up and started moving, so much so that I had to lay back down on my heating pad very quickly. That's how the whole day yesterday went--just able to handle being up a couple minutes at a time.
This morning I woke up with really bad back pain laying down. I was expecting it to at least feel good before I sat up! So, I slowly sat and then stood, and noticed as I started walking--very slowly--that the pain was going away! What the ? It was our granddaughter's 6th b.day today and I had told our daughter I wouldn't be attending. But I changed my mind as I was up and around quite a bit with little pain! Oh, I should mention when I woke up and had so much pain I took 1000 mg of tylenol--IDK why--tylenol never works much for me--but ibuprofen hasn't been helping either, so what the heck. Idk if the Tylenol lessened my pain or if my back is on the mend again!
I managed to do some dishes, etc., get ready and go the the b.day party for a couple hours, and THEN do my little library cleaning job (minus the vacuuming and carrying out the garbage-so sort of half the job), the whole day using ice packs occasionally and taking another dose of Tylenol. My back did start hurting, but in a completely different place--across the lumbar region and on my spine itself! I haven't had pain like that in a long time. There is very little sciatic nerve pain right now. Like I said, this is a learning experience--and it's the most complicated and confusing thing to learn and understand. I have to say I'm sure happy the nerve pain let up and hoping this lasts!
Hey, Grandma J! I've got one for you. My husband told me that he thought I was using my memory lapses to get out of doing anything productive. He was playing an online game when he said this to me. Needless to say I blew my stack!
Lololol--sorry, I know it's not REALLY funny. But you have to laugh after the fact, because why do we put up with that?! Hopefully, blowing your stack got his attention and he won't say stupid things that irk you--especially while he's relaxing playing a video game!!!!!
Tirezza said:
Hey, Grandma J! I've got one for you. My husband told me that he thought I was using my memory lapses to get out of doing anything productive. He was playing an online game when he said this to me. Needless to say I blew my stack!
Went to p.t. yesterday. Lynette, my p.t. angel and the only person there I'll let touch my back anymore, said she's sure it's my SI joint. She knew because of how I described the pain and how out of alignment things are. She worked on my back with her hands for an entire hour. She is very skillful in her job--I've had other physical therapists over the years who just don't seem like they care much whether or not they ease your pain, especially at this place. The one girl just puts her fingertips on me and barely moves them (her idea of myofascial release). Lynette uses some massage and pressure as well as myofascial, and you know she's at least attempting to fix things.
Anyway, she told me this can get better, and I trust she knows what she's talking about.
At work I'm going to get a new ergonomic chair, so I'm sure that'll help, too.