I started this journey sometime before September of 2017. Now I have such pain in my lower back, buttocks and thighs. I also have pain in my neck an shoulders and have been waking with a headache nearly every morning. After two arthritis strength Tylenol and getting up and moving the headache seems to go away. I had my first appointment with a new rheumatologist and he ordered X-rays of my neck and blood work. He first raised my prednisone up to 15mg for a week. There was no difference. I am now back to 5mg of prednisone. My bloodwork was normal but the X-rays showed bad arthritis in my neck. He said to call him in two weeks and maybe an mri was in order. Doctors are doing most appointments by ZOOM here. I also had my appointment with my primary care and he prescribed gabapentin that is not making a difference either. He recommended seeing a physiatrist. I don’t know what to do. Do I Perdue this with the rheumatologist or see the physiatrist? Do I continue with the gabapentin and hope it helps? I am hurting and I try to be as active as I can but that is not a lot. I don’t know what to do.
I don’t know what to do anymore!: I started this... - PMRGCAuk
I don’t know what to do anymore!
I would want myofascial pain syndrome ruled out - it can cause low back muscle spasm and buttock pain which, if the piriformis muscle is involved can lead to the sciatic nerve being pinched and referred pain into the thighs. Low back spasm can also affect other back muscles - and myofascial pain syndrome will also affect higher up including the shoulders and into the neck.
I suppose a physiatrist would do that but I would also keep the rheumy in the loop.
If the gabapentin isn't helping at all I'd stop it. What dose was the Tylenol - that is paracetamol/acetaminophen I take it? Try ibuprofen, 800mg in a single dose and heat over the painful bits and see if that helps - it did for me the last time I had an episode. Not something to do too much - but you need a flooding dose and the 800mg lasted a full 24 hours for me.
Thank you for your reply. The Tylenol is arthritis strength is 650mg. I’m really afraid to take ibuprofen because of my perforated colon last spring. I had been taking Alleve before that happened. Do you think having an mri is a good idea?
OK, fair enough. MRI won't show anything if it is muscular in origin - the physiatrist would be more use first I think.
I am sorry that you are suffering Lanakay. I was hoping that you were ok because I haven’t seen you on here for a while.
I have significant Cervical Spondylosis and have woken up with severe neck pain in the past. It is worth exploring pillows designed for people with arthritis in the neck - they can make a huge difference to the pain. I ended up with a horse shoe shaped pillow that stopped that phase of pain. I now sleep nearly flat, I find that my needs change.
I am not personally familiar with Gabapentin but I wouldn’t persist if it doesn’t help.
What did you think of the psychiatrist suggestion? Unless this was a typo?
I hope it wasn’t a dismissive thing said to you. I know you’ve talked about anxiety in the past and these are very anxious times for a lot of us. I am more in favour of mindfulness/ meditative routes but you know best. I would keep my link with the Rheumatologist, unless you feel that they are not helping. Stick with us for a bit and take care. Next steps have to be your choice.
physiatrist - "A physiatrist is a medical doctor or doctor of osteopathic medicine who specializes in Physical Medicine and Rehabilitation (also called PM&R physicians). Physiatrists diagnose and treat both acute pain and chronic pain and specialize in a wide variety of nonsurgical treatments for the musculoskeletal system."
Thank you, yet again I have learned something new from you.
In Aus we call them exercise physiologists. I was under the care of one pre-PMR/RA/Osteoporosis diagnosis when my neck was giving me grief and I then had a couple of bulging discs in lower back. It required a referral from my GP who put me on a “pain management plan” covered by Medicare. The physiologist takes into consideration all relevant medical factors to program specific exercises tailored to each individuals condition and guides you through them weekly etc. So beneficial. I still do the prescribed exercises when I can to stretch and release tension and relieve pain. Highly recommend as it reduces the pain and therefore the pain relief medication. And let’s face it, we have enough medication we have to take controlling our diseases. Which reminds me....I best go get that injection out of the fridge 😝
Not quite the same - exercise physiologists are not medically qualified, physiatrists or musculoskeletal physicians are. It's the same difference between a musculoskeletal specialist in the UK who is basically a physiotherapist with extra bits of paper and a sports medicine consultant.
Oh dear, I do apologise. I had never heard of physiatrists, I thought at first it was a spelling mistake 😂😂. From the description I assumed Aus called them something else. We tend to go off on our on tangents occasionally... although thankfully not as much as dear Mr Trump but I better not open that conversation again! 🙅♂️
No apology needed - I actually only knew because I used to read a blog by a physiatrist. A strange young woman who probably needed a good smack (in the metaphorical sense obviously) but she never ceased to emphasise SHE had a medical degree.
He seems to have gone off on another tangent - leaving the room. Haven't decided if that is good or bad - suppose it depends on your point of view ...
All I’ll say is God Save America. Can’t get into trouble then. Or can I 🤐
I thought it was a typo at first too. 😁
I first read it as psychiatrist so I re- read it and still got it wrong. 🙄
Pred head 😉
It is a strange title by any standards! And in reply to your other question - probably!!!! 
Thank you for your reply. A physiatrist I what PRMpro said. I had never heard of it either. I read this every morning like some people read the newspaper. I don’t know how I would have managed the last 3 years without all of you on this site.
Hi if it's not nerve pain the gabapentin won't help I am afraid though it can take a while to start working as you raise the dose.
Thank you for your reply. I’m going to give the gabapentin a little more time. I just started it Tuesday. I increase the dose one more time so we’ll see if that helps.
I will keep my fingers crossed something does!!🌻
Bear in mind it can take a few weeks to reach its full potential. I have arthritis in my neck and back and a few trapped nerves from disc and vertebral damage in my neck and lower back. After about 4 weeks it helped get pain down from 8 or 9 to 5 or 6. I know it doesn't sound a lot, but it's the difference between totally absorbed in the pain bubble and having someone stick a pin in that bubble for the day. 🌻
That was an excellent way to explain the effect of gabapentin! I have a disc that's gotten bad over the last 2 months. Thank God I'm left handed because the right arm nerves were a constant torture. Was put on the Gabapentin and the result was just like you gave an example. No cure, but at least for now I can still stay at my full time job until I need a procedure on that disc. Different subject - I live in a very rural area and have heard that the rural hospitals here are so quiet that they are starting to do elective surgeries again.
I hope you get significant relief ongoing. It's amazing how pain relief lifts you a bit! Everything looks a bit clearer.
That's amazing re surgeries. I heard that they are waiting to see what happens if the lockdown lifts in city areas. There could well be a second peak if people try and jump back into "normal" life. 🤯🌻
Thank you all so much. I’m going to stay with the gabapentin and give it time to work. I’m not going to give up on it yet.
Hi Lanakay. I noticed you had diverticulitis recently. I’ve been going through all sorts of new back pain, hip and leg pain and headaches, like you, since I had diverticulitis last spring. I had a second bout of diverticulitis last month and with it came more new back pain way up in my mid back. I had new MRIs last month that show lots of inflammation on my spinal nerves. My doctor thinks the diverticulitis has caused this and all my new unbearable pain. Based on how this new pain came on, it seems possible, but she hasn’t tried to reduce inflammation using prednisone or anything. She referred me to a neurologist just before the pandemic, but the 4 month wait is killing me. Now she says no one is taking referrals anymore so I’m on my own, making do with 2 hydrocodone pills per day. It’s one day at a time, I’m in survival mode. I hope you get some answers and some help, and that you’re doing better than I am. Good luck!
Thank you for your reply. You are saying the same things I am. My knees were fine before I was hospitalized for diverticulitis last spring. Now I cannot walk steps other than one step at a time. Walking on the level my knees don’t hurt but they have been swollen ever since I had to take those strong antibiotics. At least that’s what I have blamed. I don’t know if there is a connection but I don’t know what else would cause my knees to go bad all of a sudden. I understand the waiting to get an appointment with the doctor. I phoned to make my rheumatologist appointment in January and got an appointment April 9th. Then because of the Covid19 it turned into a ZOOM appointment so still haven’t seen him in person.
Both of you might find these links of interest
medscape.com/viewarticle/74...
link.springer.com/article/1... (behind a paywall but mentions the link)
karger.com/Article/PDF/50141 (also pay per view but you get the Abstract)
I just finished reading these articles. I have not had Ny diverticulitis symptoms for a year now but my sigmoid colon was where my perforation was. I’ve had diverticulosis for years but it has only given me trouble twice. The first time about 10 years ago and then again last spring. Three doctors said that a resection was not necessary unless I had a recurrence. I hope I don’t have to do that at my age. Thank you for the information. When I had that last bout is when my knees got so bad. I was blaming the antibiotics!
My hips are like your knees. I never had problems with hip joint pain before the diverticulitis. Ive now suddenly got arthritis in both hips bad enough to have replacements. Over the months, I’ve had imaging that shows it’s has progressed rapidly from just bone spurs to severe arthritis. I’m not sure if my pain there (which continues to worsen month by month) is from my back or the joints. I’m on crutches, and would have had the replacement surgery if not for the pandemic. Then a new round of diverticulitis and new mid back issues which are extremely difficult. I’ve had 2 Zoom appointments with my PCP where she finally agreed to painkillers and treated the diverticulitis, but nothing else, so I’m basically on my own. Did you get any satisfaction from your Zoom appointment with the rheumatologist? Have you had any MRIs yet? There is definitely something weird about the diverticulitis...it is another inflammatory disease, sigh.
Did you see my reply to Lanakay just above?
Thanks for the articles, PMRpro. I will ask my doctor about the possible link. I’m really scared I’ll have another diverticulitis attack. No telling where it will pop up next.
I am kind of careful what I eat and what medicine I take. My first episode of diverticulitis was nearly 10 years ago and my second was one year ago. The first time I was snacking on cheese popcorn and black grapes every night. Last time I was taking Alleve even though I knew it was bad with prednisone but it really worked well. Now I only take Tylenol no matter what.
I’m not taking NSAIDs either. Prednisone is also a problem for diverticulitis, but that’s not something I’m willing to give up. I’ve read that popcorn and nuts, etc. (used to be thought a problem) are no longer considered to be bad for diverticulitis. I think people have to sort that out individually, though. I had diverticulitis pain and symptoms for months last spring, ignored by my doctor (and myself) until it became unbearable and I was in the emergency room. I’m blaming that for the inflammation spreading and taking me down so far. But this attack was treated within a week or two of onset, and I still got new inflammation in my back, so who knows. I wish they had better knowledge about what causes diverticulitis, and how we can heal. It’s just not out there. I’m afraid if I can’t get mine under control I will be heading for surgery I don’t want. Good luck, Lanakay
I think the main problem with pred in diverticulitis is that it tends to mask the symptoms by its effect on the inflammation - so they need a very low threshold for treatment. Might be wrong ...
I was in the same place you are..the one Dr.I had not seen was a Neurologist..she put me on Topirimate..75mg. 2xdaily.. that was the only thing that stopped my thigh pain..also have they put you on a muscle relaxer?
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