Tight Fitting Jeans or Leggings

Hi @mzamyl I was not diagnosed with PMR, then GCA, for a year. I can't imagine 5 years. My pain was on a scale of 10 out of 10, with some mild relief at night. How was your pain? How did you function all that time?

I went to 11 doctors the first year, right after my mother died. Even a rheumatologist did not diagnose it. I did find out I had Hashimoto’s thyroiditis and started taking replacement thyroid. Basically each doctor told me it was degenerative joint disease and I should just take painkillers. In 2021 I was so depressed because both of my shoulders were going and it was so painful to even get dressed. My daughter was diagnosed with lupus and I visited her rheumatologist. He ran more extensive blood tests and diagnosed PMR.

That must have been so discouraging, @mzamyl. We just witness our lives getting smaller and smaller, so limited by pain and lack of energy. When I looked in the mirror, I looked like death warmed over. Before I was diagnosed with PMR, I had anemia, which made me very tired and Shingles, even after having the Shingrex vaccine. I was lucky to have a close friend, an infectious disease specialist, take an interest, review my labs, and tell me what tests to ask my PCP to order. He was really resistant, but I pushed him. My inflammation markers were off the charts, then, I started prednisone and had a temporal artery biopsy within a week. I wish you the best.

I agree so much with our lives getting smaller. It is a process of grieving about what we used to be able to do. I have a 8 year old granddaughter and a 3 year old granddaughter and I am not able to do with the little one what I once did with the big one. Also it is ironic that the one thing that gave me a burst of energy- steroids- is the one thing you can’t have for long and have to wean yourself off of. Best wishes to you and strength to cope

Hi, Teri,
Reading this thread and noting your explanation in this post. I saw my rheumie a couple of weeks ago, and mentioned my ankles have been pretty swollen, and worse at night - so getting them up on a foot rest. He suggested I might want to use compression stockings if I'm going to be out and about. This sounds directly opposed to what you are saying here. I might add, I have an appointment with a 2nd rheumie for some second opinions. I have my doubts about this guy. But that appt. isn't until May.

Hi @aspine, I always wondered how compression stockings work. I just read at a few sites that they are made in a way to target the arch and ankle areas of the foot (I imagine in such a way that forces circulaation). These sites go on to discuss how other types of tight clothing can decrease blood flow, such as skinny jeans. I was getting a massage once and the therapist remarked thet my legs had marks where the elastic of my socks put indentations into my legs and they still bore the marks an hour later. He was quite perturbed. Thanks for your comment - it made me look up how compression strockings work. By the way, swollen ankles can sometimes indicate heart issues. It might be good to get that checked. I hope you get some relief. All the best, Teri

Thank you for your reply. Yes, while looking up compression stockings, I found myself more confused afterwards. There are many pros and cons. Think I'll wait for the 2nd rheumie. And yes, I am aware that swollen ankles could be a heart condition, but when I mentioned it to my pc doctor I got no answer at all, and the stockings were the answer from the rheumie. What does a person need to do to get someone to pay attention? Rhetorical question. All the best to you, too, Teri.

It is all so very confusing because my rheumatologist suggested I wear compression socks to alleviate the neuropathy I have from my knees down due to chemo from breast cancer. My legs had been swelling at the end of the day and were very painful. I have only used the socks a few times, but they seem to help with the swelling. I have been on Prednisone now for 17 months due to PMR and am down to 3 mgs..

Hi @mzamyl I hope you can find something to do with your younger granddaughter that is just as much fun as what you did with your first granddaughter, but not as taxing for you. I'm doing well, thanks. I'm caregiver to my husband with dementia and about five weeks ago he broke his hip. He fell over a box USPS left at our front door. I was really worrried that the surgery and his having to be in institutional care for a month would take a toll on his mental acuity, but he's recovered well, and I'm managing okay. The steroids gave me a lot of energy, but I just couldn't sleep at all. Now, at 3 mg prednisone daily, I sleep fine, except when my husband gets up to go to the bathroom and makes a lot of noicse with his walker. But that's really a good sound. Take care, Teri

Well that is a heavy load. Sometimes I feel like I have a hard time being a caretaker for myself. I have gone to several mindful self compassion courses which helped me a lot. I was already an insomniac so when I had 15 mg of steroids I really didn’t sleep. At 7 1/2mg I am still awake for several hours at night. I can always go to sleep I just can’t stay asleep. I know I have to keep reducing the steroids but sometimes it feels like an iron band around my body at the level of my biceps. I lived alone as a widow for 7 years and I get worried about even getting dressed. Two of my daughters have moved in with me though to save money for a house so that has been helpful. I also have met a new partner who eNjoys taking care of me.