I am SO tired and just plain fed up with life and struggling with these diseases and yet having to try to explain things to yet another doctor! Am just about through with this life.
At the beginning of June I was at 8 mg, but In response to PMR type pain and also raised blood markers I upped my dose to 11 and then to 13 to get relief. Been on these doses for a month now. Too long to step down quickly as I understand it. I still have a stiff neck and some shoulder muscle? pain. Worse on one side. Better on some days. Pain killers don’t help, heating pad works best. Stretches help somewhat.
So while all this is going on some of you may have read my posts about other stress: conflict with my son, grief over my friend who was in hospice. She passed last week.
Problem is I lost my rheumy in June to another practice before all this happened. We had worked together successfully through a flare last summer and a pause and slower taper this January when my friend had her severe accident.
When my rheumy left I was at 9 and ready to go 8 as the next step. We had agreed on a taper of 1 mg every 6 weeks.
So when it was time to refill pred my GP had to do it. In Trying to figure out my pain she ordered a hip and lower back X-ray, showed osteoarthritis. She prescribed muscle relaxers for the shoulder and neck pain which didn’t do anything and an antidepressant. Covid has me hesitant about physical therapy. To me the pain seems like a combination of bad posture and possible myofascial pain syndrome. Maybe some PMR, who knows??!
Problem is when she refilled my 5 and 1 mg pred, she prescribed the refill to follow the taper plan my rheumy and I agreed on back in June. Which says I should be at 6 mg now, not 13mg!! I just don’t have the energy or stamina to go through this struggle with yet another doctor. I had hoped she would just refill the old prescription of 210 1 mg pills but she only prescribed 42.
I had messaged her about the refill, she then asked what dose I was on now and sent me the taper plan and asked me if this was the one I had agreed to. I messaged her back that it was, with some allowances flares, and explaining the stress that probably caused the flare and my blood markers to rise: Covid, conflict with my son, my friend in hospice and passing, the death of my car, financial stress, etc. etc
I’m so panicked about not being able to have enough pred, and don’t know what to do about the pain I still have and about tapering.
The GP has seemed like she was open to listening on other issues, but she also had said PMR affects the joints, not muscles. The doctors are all under stress because of Covid, but I feel like I’m at the end of my rope. How to cope, not up to trying to educate another doctor.
I have a phone appointment with her on Monday and this will come up. I’m losing sleep. The anxiety is so bad I start to panic when I get a message from her office. I had two horrible rheumys before I found a good one. The first one actually fired me from his practice when I didn’t follow his plan, even yelling at me.
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Mstiles
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Oh gosh, your stress sounds intolerable. What about writing a letter to explain your position instead of having the pressure of saying the right things in a rush? We all tend to gabble in these situations and then feel foolish when we think back to it and how we must have seemed. Also, bear in mind that any doc needs to be careful of adrenal insufficiency so they can’t just refuse to give it to you because you have not ‘behaved’. I know how difficult it is and dispiriting to have to fight your corner instead of being supported.
I can relate to your feelings in relation to the incidents you describe. I have not suddenly lost a dear friend though and I know that would be so overwhelming. Everything is so magnified by the very strange times we are living through. We are all feeling afraid, isolated and disoriented, at times if we’re lucky, all the time if we’re not. Relationships with loved ones can be intense and strained. I really hear you about your son.
I am always struck by how well you express yourself and your feelings in your posts. You really do need to convey all of this to your doctor, perhaps in written form. If you are feeling suicidal, she needs to know. Despair is fleeting but can be deadly and you must seek help. Your present mood is not allowing you to see the truth of your life and all the good things in it.
The insufficient Pred. thing has happened to me too and I remember feeling angry, helpless and misunderstood. It was sorted in the end, but I was put through the mill. Anyone would think we liked taking the d*mn stuff.
I get more hands on support, information and encouragement here than from any of my doctors. They don’t really have time and I hate pushing myself. I take what only they can give ie access to tests, drugs, prescriptions and really specialist medical advice.
Write down exactly what your GP needs to know. Especially the part about being just about through with this life! Please.
See if your therapist can offer you some extra sessions to help you over this hump. I am so, so sorry that you have lost your good friend. I imagine that she would want you to grab life with both hands. The offer to PM is still open. Xx
Well said! I completely agree...I always make bullet point notes prior to my appointments, too...telephone or face to face. Then I can make sure we cover everything. I find it helps. Otherwise it’s ‘oh dash’ (not exact words) I forgot to mention ‘x’, or didn’t say ‘y’!
Oh dear, I do feel for you. I think your GP needs to brush up on her PMR knowledge as it does affect the muscles - inflammation of the blood vessels in the muscles. Sending hugs 🌻
You seem to attract poor medics! To be fair to the GP there are articles in the medical literature that classify PMR as in joints - it isn't, it is the connective tissues surrounding the joints and the synovium, the lining of the joints but there is no joint damage as is found in inflammatory arthritis.
It would be wonderful if they could get one single article that covers it all properly - this one is good BUT says "it doesn't typically affects hands, wrists, knees and feet" - it may not be typical but it certainly happens to quite a lot of patients.
I agree with Snazzy and co about the idea of submitting the plea in writing.
Dear Mstiles agree with all that has been said. You write well and express yourself well so a written note is way inside your capabilities. The lack of pred is just another problem you could well do without and you need support and understanding during this time. Do let the GP know exactly what you are going through and thinking and feeling which will hopefully make her make the right decision. Do this straight away if you can. I’m very sorry to hear about your friend and her passing and very understandably all these things have added onto the anxiety and stress- not enough pred doesn’t have to be one of them. Keep in touch and know that we are all routing for you here. 💐💐xx
I hear you. Have had those down times. My rheumy visit after surgery and rehab when I had kept pred at higher dose than she expected was upsetting as I tried to explain my need for it. Though I’m normally not one to express myself emotionally to relative strangers, everything came pouring out along with tears. Have never cried with a doctor. I was appalled but she listened. Others idea of writing it down sounds helpful and will let you talk as if you are explaining to your friend whose absence I know you feel dearly. My best and a 🤗.
Such a good idea to write a letter. Just putting it on a paper can be cathartic in itself. But make sure you send it or hand it in and don’t change your mind.
It is horrible to have to have these battles just when we’re at our lowest ebb and trying to avoid stress, but do try to persist as you will win through after Monday I am sure. Write it out then send it and try not to think about it over the weekend. Keep a copy so that if she hasn’t received it, you can read it out on Monday.
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PMR pain due to stress
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