A Bizarre Change in Condition
Something seems to be going on with my body. Since this all began in Jan with tight and painful thighs (quads, hams, abs, ads, groin, lower derriere), followed by the infamous massive upper arm and rot cuff pain. A few mths in, the Baker's Cysts joined the club and caused all manner of added pain and impaired my movements greatly.
I have taken nothing more than 1 200mg Advil per night for this for a variety of reasons. Have found a wonderful doc who will prescribe LDN for me and know many places to purchase CBD if I decide to try that. Every week or so I would have a day of respite where I felt like I was getting better. I thought, "Ah, this *has* been a weird reaction to over-exercising after all," only to be overcome with pain the next day. I learned not to become excited over these very temporary but very much appreciated days of much less pain and anguish.
Over the last few weeks, I have felt much more mobility in my arms, which are still extremely sore and movement impaired. I try to baby them, but they are arms after all and I feel I overuse them every day just doing regular household chores, nothing heavy duty.
Quads are nearly normal again. Still having trouble getting down on the floor as groin and upper legs are still stiff (which could be from underuse) and Bakers Cysts are still there but much less painful. I have an appt with an ortho to have them drained in a few wks. Maybe I'll ask him about my arms and submit to cortisone shots if he doesn't think they'll cause the side effects I can't tolerate.
Had an appt with a rheum a few wks ago and am still recovering from his borderline (a gift) abusive behavior. It was a NIGHTMARE.
Just wondering if anyone has had a similar experience and if this is just a vacation or am I really getting better. Still fatigued and lots of malaise. Had labs done within the last month and ESR and CRP were the lowest they've been since my symptoms started.
Had a CBC about a month ago which was normal. Some on the high side which I expected.
Thanks for any feedback.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Mary,
Absolutely, I agree. No one should go into any alternative treatment without researching and consulting with their GP, especially where many are on a sundry of medications that could potentially interact. Herbs and homeopathic medications may not seem dangerous, but in some instances can be, even veggies if one is on blood thinners. I always recommend researching. That said, even in Western medicine one must consider risk/benefit regarding what a doctor may deem beneficial. I am first and foremost a patient advocate. While for example while Methotrexate may be considered in the event one has relapsed re: PMR and steroid taper, one must consider the potential detrimental side effects. But this goes for most anything, including aspirin and OTC medications. Here in Ireland the Functional medicine model is very good, east meets west. The Irish culture is old and they have embraced many ancient medicinal modalities not considered in the USA until the last 100 years or so.
Warmly.
Patti
Thank you, Irish sister across the water!
After a month of NO prednisone and dealing with pain that was making my life miserable, I went to the doctors and agreed to go back on at 5 mgs only.
I also take Tylenol in and organized time. Took me about two weeks to get the steroid and Tylenol to work best for me and I feel pretty good.
I take my prednisone around 7 pm, as it makes me light headed/dizzy and I am usually relaxing and watching my fave tv programs.
I take an extra strength 630 mg Tylenol around 7 am. Works for 8 hrs and gives me a pretty good day (prednisone is still in my system from the night before).
I will add one 500mg of Tylenol if needed around 2 in the afternoon.
So far so good.
I know Tylenol has its downside- but at 75 yrs old in August, I felt like I had no life with so much pain.
I still deal with balled up muscle pain in both upper arms…..was approved for acupuncture so we shall see if that helps that area when they call for an appointment.
Did your Rheumatologist suggest Methotrexate as an alternative while you taper from prednisone?
Glinda,
Thank you for sharing your story. I can only imagine your frustration. My Rheumatologist is brilliant. She in fact did all those tests when I was admitted to hospital back in October. It’s a long story but my diagnosis came about while I was there. I had scans, X-rays and you name it. Initially, not knowing what was going on (and I’m happy to share at some point) with me, they literally turned me inside out, including antibiotics. Once PMR diagnosis had been made, the antibiotics stopped and I was started on prednisone. The odd thing, I did not experience any aches/pains until 2 or 3 days into my hospitalization. But many other things were ruled out including Lymes, ME and other illnesses which are all autoimmune. PMR still not understood re: causation but felt to be viral and probable autoimmune. Given what covid has done to the immune system this all seems likely. I contracted covid in July a year ago and continued to feel poorly over the next few months. My Rheum doc did absolutely everything. I’m relapsing on prednisone at 5 mg and she’d like to put me on Methotrexate. Although I trust her, I am researching risk/benefit. A PET scan is ordered. She is amazingly thorough!
Yes, Ireland is my home although I hail originally from the Boston area. I moved here about 20 years ago.
It’s on the cooler side here but I’m not complaining given what I am seeing in the USA re: places so oppressively hot. I hope you are well otherwise. I’m so glad to have found this forum. Folks are amazing. Stronger together. I believe that! So nice to meet you and share your story re; your husband’s Irish connections. You’d love it here.
I wish you good health.
Patti