Those of you who’ve read my earlier posts know I’ve been in one of those rough patches that we’re so familiar with. This one seems to be paralyzing me in how to deal with my rheumatologist.
Ive now been back at 10 mg for almost three weeks after stopping half way through a taper to 9. Pain and stress had increased at that point. In addition to losing my friend, my son who I live with, and has PTSD from earlier medical traumas, has been struggling. When He gets wound up It’s very stressful. My car has finally died and I don’t have any way to replace it. Etc, etc...
So my questions, I’ll stop rambling
I need to either call or see if I can get an appointment with my rheumatologist, or let it go and just proceed at my own pace and stay at 10 as long as I need to. Making this decision is what’s got me frozen. I don’t know why it’s got me so scared. I don’t want to make things worse.
The pain I’ve been having seems somewhat different from PMR pain I had before. This time the pain is pretty much all on the right side and the worst is upper back and lower back sacral area-worse lying down. Can it be PMR if it’s not bi-lateral?
I also have pain in the right knee where I have osteoarthritis and a little occipital head pain. And shoulder and elbow pain, which is on both sides. Worse at night and in the morning.
Got the deathly fatigue too. And left eye cataract has gotten really bad and will need surgery pretty soon.
I just feel stuck and overwhelmed and just want to go to bed and not deal with anything.
Sorry for all the whining!
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Mstiles
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You’re welcome to whine! You’ve been through and still have a great deal of stress which would be difficult in the best of health but throw in PMR and it’s not surprising that you are feeling overwhelmed. I do think that it’s important to try and stay in control of your body. Your the one living in it and the one who knows it best. There are sadly too many doctors who act like gods which they are not and too few who work with you. If your comfortable at 10 then why feel pressurised to drop. I have always found that stress has played a major part in flares. I have thankfully been left to self medicate throughout the time I have had PMR. I have listened to my body and adjusted the dose accordingly. I have had few flares and after over three and a half years am finally down to 2.5mg. I never like to give direct advice as I think one should draw ones own conclusions where possible but right now does not sound like the right time for you to be trying to drop your steroid. Do hope things start to get easier for you. Life can be so very difficult at times
You have a lot on your plate Mstiles, this is a good place to vent.
Does your son have therapy? That is where he needs to work on his PTSD. It never works with your loved ones, they just can’t separate themselves out from the distress.
I wouldn’t be attempting to taper with all this going on and might even consider a temporary boost of 5 mgs, going back to 10mgs after a few days. That has worked for me a couple of times. Your language sounds calmer and more relieved when you talk about taking control of your taper yourself, and remaining on 10 mgs until you feel better and not involving your Rheumatologist. I think you may have decided to do just that. I would still see your GP because some of the pains do sound as if you have something else going on, particularly in your back. An X Ray may be useful. Are you seeing someone about the cataract - it would be a relief to have that sorted. I am going through a phase of deathly fatigue and am just going for sleeps when I need to. Interestingly when I have to do something, like travel to Birmingham to a service to place my mum in law’s ashes and a family lunch, I was fine. I sometimes think I am under stimulated .
You neither whine or ramble. You are just explaining your understandable feelings and are seeking answers. Hugs.
No my son isn’t going for therapy, he hasn’t recognized PTSD in himself from previous medical trauma, just anxiety. He’s had a few visits to a psychiatrist for anxiety and some medication but he says talking doesn’t help.
I haven’t got much time for psychiatrists, personally. It always seems to be the drug route and labels. The right psychologist however, can really help to turn your life around, in ways you haven’t imagined. Sometimes it can help to step out of the Mum role and let your son know how you are feeling. People get stronger when they feel needed. Forgive me if I am well off beam here. I do sense that he worries you more than anything though. 🌹
I remember once bursting into spontaneous tears, surprising myself as much as him, when he was returning abroad where he works. He didn’t realise how much I loved him and it added to our relationship. Sometimes what appears to be negative can have surprisingly positive results 🌺
Yes as a mum Jane, you’re right. He does worry me more than anything, and he’s struggled since his twenties when he had 3 surgeries for Crohn’s disease resulting in a permanent ostomy.
I do have a wonderful therapist, we do phone sessions now since I’m in Northern California and she’s in Florida now. She’s helped me so much through the years. I’m going to talk to her Tuesday. About PTSD I think I may have some along with my son who has never dealt with the trauma of his surgeries and the permanent ostomy.
I am so glad you have that person to talk to. I know what it’s like to take on your child’s trauma. I sometimes think I still carry it and her life is absolutely sorted. I mean miraculously, sorted. Wishing you well. X
No you’re not off base about stepping out of the mom role. Very difficult with a child who has problems! But I did manage to say yesterday “it would help me if you would lay off negative comments for awhile “ and he did.
I left you an answer about how to try to deal with your Rheumy on the original post earlier , I hope it might help.
I'm so sorry that you are in one of those horrible situations when everything hits you at once.
Tapering is the least if your worries at the moment and an unrealistic thing to try to achieve , your under so much Stress that you Pain will be hard enough to manage as it is.
With the other OA and head pain you have you may actually need to make an appointment with your GP to have these examined and see if you require extra pain relief to cope with it that may actually be an increase in Pred or may not be Steroid based .
In the meantime you may benefit from rest , heat and Paracetamol daily at the standard dose to see if these will help to ease any pain that may not be being relieved by your Prednisone.
If your Son is also having trouble at this time it may be good to get him some extra help too , or find a family member or friends to help you with some of the Caring work you probably have to do now.
It is so much easier said than done , but any way that you can find to allow yourself time to relax and recover will help you cope right now.
Yes I just can’t manage talking to my rheumy right now, I’m afraid to make things worse, causing more stress. I have decided to make an appointment with my primary doctor about the pain which is so specific to the right side.
I wish there were friends and family to help with this right now. Part of the problem is I moved out to California 4 years ago away from friends of 40 years and was starting to try to make new ones when I had health problems and so never made any close connections. My sister is here and has helped us so much financially but she doesn’t understand or believe in the whole PMR/GCA thing, and is always asking about how low I am on the pred.
My older son is thousands of miles from here still in Atlanta.
Does you sister at least help you in coping with times when your son needs extra care?
It is a hard situation to be put in , to end up getting a Chronic Condition with which you need help not long after you have moved to a new area and your old support network isn't about.
It is good to help you Mentally , and with confidence , to keep chatting with old friends , even by email if you aren't up to chatting on the phone , and also chatting on the forum with your Faraway Friends , like me , on here.
When you go to the GP it may be a good idea to see if they have any information or leaflets about local support groups , clubs , or Home Help volunteers in the area for both you and you son . You might also benefit from asking to be referred to the Occupational Health Department so they can assess your home and your needs to see if you or your son can qualify for gadgets etc. to make doing things easier.
You may even be able to get access to help from Home help for cleaning and laundry Lift Volunteers while you are still getting back on your feet , the Hospital or Social Care Services may have more information on that , doing the research may be something any friend could help you with as it will be on the internet or they will be able to find addresses and phone numbers for you.
If the GP has no information on groups , even if you are not a person of a particular religion or faith , churches , synagogues and temples of all denominations often have clubs that are open to all , and volunteers that happily come out into the Community to give domestic and practical support , or just a little company , with no strings attached.
They can often ask their Congregants about what they know too , and they will often give you advice on where to find Chronic Illness support groups and assistance.
Groups like the Women's Institute and Voluntary Service are also invaluable for getting extra help and friendship at home.
Get the pain under control and there will be a bit more light at the end of the tunnel for you elsewhere too.
It is a shame though that your sister isn't more understanding and sympathetic about your health needs and the restrictions that can be put on you with something like PMR/ GCA when you consider the profession she is part of.
She should really realise more than most people the effects of conditions like this on your abilities around the home and in doing things outside the home too.
Has she ever read anything about it since you were diagnosed , it might aid her to be more helpful with other Patients she sees in the future too.
It takes time to get outside , but do keep in contact on here and by email with your old friends and it will help.
Maybe in the future , when you have started to recover from the effect of your current situation , you will get to the point we're you feel confident to have visitors and help from other groups.
My sister doubted the diagnosis from the beginning as my headache wasn’t as severe as a few patients she has had with GCA, and she’s been more on the side if rheumys who’ve wanted me to reduce faster. If I tell her about symptoms she always asks me where I am with my prednisone. I gave her printed information at the beginning but don’t know if she ever believed the diagnosis.
It’s difficult because my son and I can’t make it without her financial help. And we are so grateful to her for that.
We have fun together when I’m up to it, but I’ve just learned I must get my emotional support elsewhere.
It does sound a bit as though all the tension is now being felt in your body and the unpleasant extras may not be PMR per se. If you can manage with acetaminophen, heating pads (or cold if that works for you) and whatever you can do to help you relax muscles which may be very tight if not in spasm, that would be better for you than an increase in pred. But I certainly agree you are in no position to be tapering right now and should stay at 10 mg for the time being. If the other techniques don't provide relief or if matters get worse, please see someone about it. I don't think you should increase your pred too much without medical oversight, but whoever you see needs to know that you may be getting pain from something other than the pre-existing PMR and it should be investigated so you get the most effective treatment.
Just going to toot my trumpet to what these people have just said and take my hat off to you and of course you’re not whining; you’re saying it how it is and why not?. The body telegraphs distress with pain often so I wouldn’t panic but I wouldn’t reduce either.
Thank you Snazzy. When you’re brought up to stop whining it’s hard to complaine and “whine”.
Yes the body is constantly trying to tell us what’s wrong.
Given the last few months there is no way I would be reducing and i am glad you are communicating and sharing.. That's what we are here for. You have had advice managing current issues so I will just say sending positive thoughts and I hope you feel better soon. 💜🌻
In my case, something like that would be due to myofascial pain syndrome - back muscles tight and getting tighter due to tension and being uncomfortable lying in bed makes it worse in a vicious cycle. In fact, being awake lying in bed cogitating makes it worse even though you don't notice it until you get up! Being without the car compounds things - you are walking more, even if it isn't much more.
The entire situation is overwhelming and you have no way of relaxing and saying "Not anyone else, me alone for the moment" and that also adds to the sense of panic when you have to try to sort it out and represent yourself to someone you obviously have a degree of apprehension towards in terms of saying, no, not doing 5, not even doing 9mg pred for now. It isn't fear but you are worried about doing it although you know this is what you need for the moment.
Do you have a good relationship with your PCP? You need to present all you have told us to someone who can offer access to pathways to help you cope. Even getting one item smoothed over will be a start. Not that I currently have much expectation of a PCP - mine is useless except to write the scripts we request!
PS - on Monday I gave in and took 800mg ibuprofen after trying the heat option which usually works on my sacroiliac pain. That single dose of ibuprofen made such a difference that the heat finished off and things have improved steadily since.
I took 10mg for months when I was under stress. Good advice from everyone. Like PMR pro, if all my other painkillers fail I take a single dose of ibuprofen. For me this has helped all my other aches and pains.
I also took myself off to my GP when I felt my depression/anxiety spiralling out of control and he really helped by listening and changing my drugs etc.
That all seems like a long time ago (3 years) now as I am now down to 3mg, my stress levels are better and my other ailments are being helped. Its been a long slog though so I feel qualified to offer you my empathy for your current situation. I do hope you start to feel better soon and you and your son get the help you need. Its hard I know but keep in mind that this too will pass xxx
Thank you! Hearing your experience is so encouraging. I’ve read on this site that some doctors even recommend staying on 10 for quite awhile to avoid flares. Wonder if 10 is a common sticking point.
Oh, Mstiles, I hear you about climb in bed and do nothing. Am home after back surgery and the coping to function gets me down as I have so many “shoulds”. Can’t drive and may need a different car when I get to that point. Drs all want to see me and I just want to be left alone to lower my stress. My rheumatologist wants me to reduce pred also and am dreading bucking her. Do keep venting here. Have gotten great support. Drs seem to forget—“ do no harm”. I’m with you and completely understand your struggles. 🤗🤗
Dear Heart, I’m sending you strong loving energy to help you weather this rough time.
About a year ago, I developed bursitis On my right hip, not in hip joint, but other pats of large pelvic/ hip bone. It was painful, but only on one side. The doctors offered little to improve the pain other than physical therapy, which I found did nothing to help.
Doc did give me prescription for Gabapentin , which was the most beneficial. It immediately eased about half the pain, which made things much better.
I had been working on a taper from 6.5 mg prednisone to 6 mg. After a few weeks, I boosted my Prednisone to 10mg per day, which helped. After 4 days, I dropped back to 7.5 mg pred, where I remain today.
** I have split my pred dose to 2.5 mg at night, and then 5 mg in morning. It helps through the night.
Other things that helped, Heating pad, hot shower/bath, topical rubs and over- the -counter ibuprofen (taken with stomach protecting yogurt or other food.)
I have found that some food, cracker, yogurt, even stomach acid tabs remove most of the problem for me. I do not take much, but occasionally, It does help. Better than narcotics the docs seem willing to give me.
Just keep posting Mstiles . We may not always have the answers but know that you can vent off on here when things get too rough. I agree with others about now not being the right time to reduce, I feel. Do you have any practical support from anyone else? Xx
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