After Rheumy appt...now where or nowhere?

[Missus835]

I cannot put to pen the pain I am in this morning and over the last 2-3 weeks (but this particular morning, it's over the top. Several trips to the ER and a CT-scan showed diverticulosis, which is not supposed to cause pain according to ER doc. This pain I have is my WHOLE torso, muscles up the front, back, spine, to the left of stomach. I am now using a walker, because I cannot straighten up in the mornings for about an hour. Left hip and thigh are numb and have been for about a week and a half. Entire hip girdle. I can just barely get out of bed and onto the walker.

I say all that to say this. Had an in-person appt. with Rheumy on Tuesday gone by. She went over the ER reports (not aloud, just asked a couple of questions). She had me lie on her table which nearly killed me as I can't lie on my back and of course, raise your hands over your head. Then I had to get off the table (which probably strained a few more muscles). Her diagnosis: "I think it's muscular". Prescribed 1000 mg. of Tylenol "because that's a safe amount". It did not work (of course I knew it would not). She wants me to take one Flexeril at bedtime, which leaves this girl hung over the next morning, but still in dire pain. She harped about me being at 30 mg Pred and I should "get that prednisone down". At this point, I'm wondering if I should increase it to see if it helps with the pain, although it HAS NOT in past. The only thing that was initially helping was Ibuprofen and Tylenol together. This still takes the edge off. I bought some OTC T-1's, but two of them do nothing.

I am able to sit, but try to keep moving as I don't want the muscles to tighten even more. At least I got a rollator from the Red Cross so I'm able to get out of the apartment, once I'm down the one flight of stairs. Very grateful for this as is a six-month loan which I hopefully will not need for that long.

Got on the Googler this morning. Myofascial muscular pain? Fibromyalgia? I cannot understand why she will not get me an MRI or some other scan. I don't even know what the initial CT-scan showed, prior to all of this pain escalating. I need help but after four ER trips, I think they're also doing a "hit and miss", but I foresee another trip in and surprised it wasn't this morning.

Sorry for this long post/rant/search for answers.

[Missus835]

I might add that 3 weeks ago CRP was 3. 2 weeks ago CRP was 42 (so I upped the Pred to 40 mg. from 32). A week ago it had dropped to 16 (this is the marker the Rheumy used). I arranged the bloodwork myself to see if was dropping on the higher dose.

[Nextoneplease in reply to Missus835]

Hi Missus 😊

I wish I had something concrete to offer - but I can only say I’m so sorry you’re in so much pain and it sounds to me as if you’re doing everything possible to manage it. I hope someone comes along soon with some helpful ideas……I guess this is a job for a GP but I think they’re even more scarce in Canada than in the UK?

Sending you gentle hugs xx

[Missus835 in reply to Nextoneplease]

In Nova Scotia with no GP. Thank you for the gentle hug. X

[BarachoisBay in reply to Missus835]

I am in NS too. I lost my GP recently and have to go through Virtual Care NS to connect with a NP or a doctor. You have to call 811 first and get registered on the list for people who don’t have a doctor. If necessary you will be seen by a doctor otherwise your appointment is done on line. Hope this helps. Mary

[PMRpro Ambassador]

The trouble is the ED is not the place to sort chronic pain - but you obviously have a rather pathetic rheumy.

The Tylenol will be 4x 1000mg and taking it regularly MAY sort it out to some extent. I've always found just paracetamol didn't do much but I have finally got a result: I take 1000mg before bed, get up in minimal pain and take more a bit later and that really seems to work well. I should add, I have had nearly a year of myofascial pain and it is just beginning to fade. I was given an NSAID which did work fairly well but even at low doses it started to cause headaches so that was the end of that. Most useful has been physiotherapy and a technique called neural therapy - repeated sub.cut. lignocaine injections all over my back.

Have you access to a pain clinic?

[Missus835 in reply to PMRpro]

Thanks Pro. Did you mean lidocaine injections? I asked her about injections (any kind of injections because my stomach is taking a hit) and with the pain diagnosed as diverticulosis, I'm wondering if it's actually IBS because this morning it's the whole stomach area with some very loose stool. Plus, the rest of the muscle pain. Both sides. Up the back muscles, up the abs. I will get my pharmacy to fax her this morning, as they have been very helpful. I just need to know what to ask for. Also going to mention myofascial pain syndrome. I cannot describe this Rheumy. Always feel like I'm getting the brush-off.

Did you mean. paracetamol at bedtime, or Tylenol? I will try anything at this point.

[PMRpro Ambassador in reply to Missus835]

Same thing, just different names in both cases,

[Missus835 in reply to PMRpro]

Oh ok. I didn't know. I will give it a shot at bedtime. Thank you so much for your always helpful info and fast responses. I appreciate so much the help I get in our forum. Enjoy this day!

[Missus835 in reply to PMRpro]

There is a pain clinic here in Halifax and I did ask her, but she acted like she didn't even hear me. I shall call them as I just found their number and see if they will contact her.

[Nextoneplease in reply to Missus835]

Good luck with this Missus, sounds a good plan 👍

[powerwalk in reply to Missus835]

Best of luck with the clinic, i hope you get some information that might help you. Dont understand the numbness you have, why they are not getting you an mri. Let us know how you get on x

[Missus835 in reply to powerwalk]

Yes indeed. Why not an MRI? It would sort out many things I think.

[powerwalk in reply to Missus835]

Knowing is half the battle. As I've found out recently!! I really hope you get some help. X

[Missus835 in reply to powerwalk]

I couldn't agree more. Even though sometimes I don't want to know...we have to know, because we're our own best advocates. Thanks!

[Sharitone]

diverticulosis, which is not supposed to cause pain according to ER doc.

Well, I'm not an ER doc, and maybe that's not the source of your pain, but this is what NHSinform says:

Symptoms of diverticular disease include:

lower abdominal pain

feeling bloated

nhsinform.scot/illnesses-an....

[PMRpro Ambassador in reply to Sharitone]

DiverticulOSIS is usually painless, it is just the word for the formation of the pouches in the abdominal wall which is common as we age. DiverticulITIS is painful, it is when the pouches or diverticula become inflamed when food particles get stuck in the pouches and bacteria are able to grow and cause inflammation/

Diverticulosis is a physical state, diverticulitis is a pathological condition.

[Missus835 in reply to PMRpro]

It is pain on the left side about opposite my navel a few inches, and thru the night usually. Last night I was pretty convinced the "osis" had morphed to "itis". Unsure why this acts up more often than not thru the night. My daughter is going to feel around my muscles for any adhesions or trigger points as relates to the myofascial muscle thing. There are definitely trigger points which I could feel earlier, where I was able to reach, and too many fat rolls for me to feel the fascia.

Thanks again Pro and also to Sharitone.

[Sharitone in reply to Missus835]

Hope it calms down soon❤️

[PMRCanada in reply to Missus835]

I have diverticulosis (generally no pain but can cause some bloating and loose stools especially if it’s developing into diverticulitis). The pain from diverticulitis is very specific, intense, and targeted (lower left abdomen). Do you have any other diverticulitis symptoms (low grade fever, chills, nausea)? You may be dealing with more than one health issue as the pain in your torso and related muscles sounds like it is a separate issue.

Regardless, I hope you get some answers and treatment/relief soon. I recognize (as a fellow Canadian), the challenge of getting medical woes sorted out with, at the very least, a GP. Recent article about ER dept’s across Canada means getting help that route means having lots of time and patience….not something in full supply when one is on chronic pain. Take good care.

[Minimags123 in reply to PMRCanada]

long time sufferer of diverticulitis, had colon resection a bit over a year ago. Along with pain, fever you will get mucous stools and maybe blood in stool when the osis becomes itis! Painful condition but I can say that the surgery left me with unpleasant pain in incisions and nerve damage. Add to this recently diagnosed PMR, pain is not my friend!

[PMRCanada in reply to Minimags123]

I too had (painless) rectal bleeding once so far in my diverticulosis/itis journey (started July/21).

Sorry to hear of your poor outcome post surgery. Now PMR too. It’s so difficult when the health woes start piling up.

[Stills in reply to PMRpro]

useful information thank you, I’m having digestive investigation/issues/ cancer query/ omeprazole/ weight loss/ abdominal pain ..... and hadn’t realised the ITIS

[Nightingales]

so sorry, what a horrible time you are having. Just a couple of things from my own experience. I have diverticulosis, which usually behaves itself except on two occasions it became infected and I had the symptoms you described. Antibiotics to care of it. Also, you have the righty to copies of all your imaging and investigations. Your GP or hospital should give you copies if they are not available on line. And I presume you are on a stomach protectant or gastro protective pred . I changed to those and they made a big difference to my stomach pain and bloating. A bland diet sounds a good idea at the moment. Very best wishes. 🌷

[Missus835 in reply to Nightingales]

Thank you. I do take ppi to protect the stomach. I'm going to request copies of my records because, contrary to what they may think, many of us do know what we're reading and I'd rather ask questions in this forum for the straight answers. Are you in Canada? They look at you like you have 2 heads here when you ask for a copy. LOL.

[Nightingales in reply to Missus835]

I am in the UK. My surgery are good, give copies no questions asked and sometimes they are on line. I had a good illustration of why you should check. I was having awful earache and eye and jaw pain. My symptoms qualified me for the two week apt and MRI. The ENT dr called and said all was well. When I got the copy the MRI clearly said sinus infection and my GP agreed and said ENT must have missed it! A course of antibiotic later and my ear ache and facial pain has gone. Scary really.

[Missus835 in reply to Nightingales]

Wow. This is very scary. They are not gods all though some think they are and there are some who are just too busy. I'm glad it was caught and you're ears and sinus infection is fixed.

[Minimags123 in reply to Missus835]

you have a right to all medical documents, some offices may charge for the photocopy of them. In Sk, Canada we can access our tests on line. Very helpful. Google helps with explanations but be wary about going down a rabbit hole with self diagnosis.

[PMRCanada in reply to Missus835]

I’m in Canada and have a file folder full of hard copies of my medical reports which I got from various doctors. Everything from CT scans and MRI reports, to some bloodwork and Pap smear results. I’m fortunate that all my medical team were ok giving me copies for my records. Hope you have some luck getting your hands on your medical info.

[Myfoe]

so sorry you are having to endure this much pain have you tried a heating pad or ice pack? I live on my heating pad when things are rough, sadly your also at the whim of who ever reads your scans the last 3 issues I had (gallbladder, hernia and back disk issues) the person reading my scans missed my issues, younger Dr seen my gallbladder was bad removed it found stones and serious scaring also seen my hernia and I just had surgery for 3 disk issues 2 days ago after no longer being able to walk upright feel my feet/toes intense pain from back and down my leg… try some heat I use it for an hour every morning until my meds kick in I am at 10mg prednisone down from 60 and 25mg methotrexate hang in there better days are ahead

[Missus835 in reply to Myfoe]

Wow you've been through it! I've had 2 disc surgeries in my life and both were successful, however, I'd be surprised if the lower back and hip are not disc. Married to my heating pad for a few weeks now. Hopefully being able to walk with the rollator will keep me from seizing up entirely. All the best to you and your healing! ❤️

[SheffieldJane in reply to Missus835]

Just seen this. I have been diagnosed with diverticula disease and haemorrhoids, by colonoscopy and an MRI scan ( to check for LVV in the abdomen)The lower abdominal pain I have been experiencing has been intense and accompanied by feeling quite ill , dizzy and lacking in energy. It has also provoked bilateral arm, leg, finger and foot pain. My mobility is quite poor. Currently doing a painfully slow taper to 4.5 mgs. I find fasting helpful and a diet of small amounts of fairly easily digestible foods such as soups and white fish/ mashed potato, no gluten. I have been prescribed Buscopan and occasionally use a stool softener. I have sluggish, difficult, frequent, bowel movements. It has been casually suggested that I also have IBS by a GP. I am also prone to occasional vomiting without much warning. Unusually I have a small point of pain, like an internal boil in nature in my lower right abdomen - almost groin area. A recent7 day course of antibiotics has eased things a little but now I feel that it is starting up again. I am having to be persistent with primary care now that cancer etc has been eliminated as a diagnosis. Paracetamol takes the edge off but it is cause for concern. A hot water bottle is comforting. Does this ring any bells?

[Missus835 in reply to SheffieldJane]

Oh my SJ you're going through it. Not so many bells. The diverticulosis/itis has remained about the same with left side pain about a hands breadth angle from my navel. Sometimes it's very painful and then it's "just there". I may be going through a flare as trying to taper. Bi-lateral shoulder pain, neck pain this morning. Just tapered to 27 mg. on Monday gone by. It doesn't seem to be handling the PMR pain. My low back is a whole other ballgame and very debilitating at this time. Yesterday was a good day and I was able to stand for awhile and have a chat with my neighbours. I think I stood a bit too long.

This morning - had to get out of bed and push a chair around until I could straighten out. June has been quite the month. Had a slew of tests done on Wednesday: bloods, x-ray of hips and spine, urine (as I always seem to have UTI of some sort); also the cholesterol will be checked. My stint with Rosuvastatin did not go well and so pharmacist says to go off it until she can talk with rheumy (heart palps, and rhr 121 for a couple of hours). I don't think I have IBS. Are you sure it's not appendicitis, given where the pain is?

I do eat quite a lot of oatmeal in various forms, which I think helps the bowels. Also, I do drink a lot of water, but have cut back a bit (PMRPro ;). Here's to all our issues working out!

[SheffieldJane in reply to Missus835]

Thank you that is all helpful. No my first thought was appendicitis but a sadistic doctor pressed really hard and told me I would have jumped off the bed if it was my appendix. I wish you well too. These things dominate your life. My two lively grandsons are coming from Australia in two weeks, I fear that I am going to be a bit of a boring granny. I like oatmeal too, it’s one of my safe foods. Good luck with all your tests. Do you take calcium? Adcal gave me almost constant cystitis symptoms It is a lot better since I gave it up.

[Missus835 in reply to SheffieldJane]

I take calcium which is in the Tums but not taken it recently. I try to get it it my food now. Lots of D3 though.