Feeling very low

[Hiibilly]

Hi I haven't posted anything for quite a while having had a phone call from the rheumatologist to tell me that I have a stress fracture in my left hip. Had blood tests, bone scan, covid vacs, more x-rays and started methotrexate so that I could tapper the pred. I have tapered from 12 to 9 mgs over the past few weeks. I felt fine on 10 mgs and not terrible on 9mgs but just very down in the dumps. I know this is probably to do with loosing my cousin very suddenly and not being able to go to the funeral but I am also finding that I feel battered to the floor by a long periods of horrible pain. I have also been told that it will be at least 12 months before I get the hip replacement I need and they want me to loose what seems at present a huge amount of weight. I have changed my diet dramatically over the past few years cutting down on processed foods adding lots of veg and cutting down on meat particularly red meat which I only have once or twice a month. I did put a lot on last year with pain and immobility being major factors. I have said on here that I got a mini exercise bike and have been using that but just feeling very down and low..

[suzy1959]

I’m sorry you are feeling so low, but it sounds like you have every reason to be. You have had a significant loss and are in a lot of pain with not much prospect of relief from that for a long time.I have had 2 hip replacements after being told I had to lose weight to have them done and knowing I could not lose any more than I had already. The pain was so bad that I began to research whether I could find a surgeon who would operate on me despite my weight.

I don’t know where you are in the country but I found one in London who eventually did both hips and both knees successfully. I had to pay for them but my surgeon would have done it on theNHS too.

It takes a bit of energy to do this kind of research , but it really can pay off, so please don’t despair.

[Bubble56 in reply to suzy1959]

Hi Suzy 1959, feeling low is an understandable and horrible side effect of PMR and pain. I’m bipolar and have really struggled to keep my mood up and keep to a low carb diet and to be as active as I can be but it is depressing in the truest sense of the word. I don’t know if I’m allowed to recommend a book on this site but this one was given to me by a psychiatrist and it is very, very helpful: Mind Over Mood ( change the way you feel by changing the way you think) by Dennis Greenberger PHD and Christine Padesky PHD. It has helped me!I do hope you feel better soon, there is definitely light at the end of this very long tunnel- or so I keep telling myself. 😘

[Hiibilly in reply to Bubble56]

I am sure any thing that helps is allowed thank you for that suggestion. I found just writing down just helped. You get stuck in a fog of your situation and reaching out sometimes feels impossible especially when there is so much sadness about. Cutting the times frame is also something that I forgot about deal with a time frame you can manage, I have been looking at a another 12 months of agony having to ask for help and it seems impossible, if it's just the next ten minutes you can manage then concentrate on that. It is good to talk.

[SheffieldJane]

The measures you are taking to get in condition for your operation are seriously impressive, requiring a strong will and mighty self discipline. You have every justification for feeling proud of yourself. My money is on you to achieve all of your goals.Chronic pain is very battering and it is almost impossible to stop your thoughts sliding down into a negative spiral. Methotrexate may well be contributing to the depression, alongside being on a dose too low for your symptoms to be controlled. Talk to your doctors about it.

Lastly and certainly not the least of your suffering is the loss of your cousin and the inability to say a fitting goodbye with a conventional funeral. Is it possible for you to do something special that remembers your cousin and what you meant to each other?

This awful period will pass, although it feels like it won’t and there will be happy times ahead. One small step at a time. 🌸

[Hiibilly in reply to SheffieldJane]

Thank you for that I have been keeping it all bottled up which is never good. My family have been so good at looking after me and I have found it very hard to tell anyone how low I have been feeling so I will try the doc. Thanks again you are all so lovely on here.

[123-go in reply to Hiibilly]

I'm so pleased that you have a loving family to look out for you. You are doing so well in the face of recent loss and current pain, etc. Your low time will pass and you can say anything on this forum without being judged. This is just the place to come when you need to get things off your chest. 🙂💐

[Hiibilly in reply to 123-go]

Thank you 123-go it is so easy at present to get lost in your own head space and on here you know that you are talking to others that know what it feels like to struggle with pain . It has taken me weeks to admit how low I had got but writing it down here has really helped me look from another angle. I have been reading the posts but didn't now what to say, thank you so much.

[123-go in reply to Hiibilly]

We are so fortunate here to have all these friends to listen, sympathise and advise. No one is allowed to feel lost and that's a great feeling.

[jinasc]

Apart from pred, what other meds are you or have been taking?

I did take a look at your profile before asking.

[Hiibilly in reply to jinasc]

Hi I jinasc I am taking amitriptyline, folic acid, vitamin D, methotrexate 10mg per week and paracetamol. I was told to stop taking calcium and have also stopped allendronic acid. I am still not sure I am on a high enough dose of vitamin d but I am speaking to my GP later.

[PMRpro Ambassador]

It is possible that not only the pred but also the amitriptyline is contributing to weight gain so it might be worth discussing that with your doctor.

I know you have cut meat - but eating loads of veg and fruit instead of no carb protein may not be helping the weight problem. Can you see your way to going back to more meat and lower carbs? You can't rely on exercise to lose weight, you have to do an awful lot to lose a pound! But it is possible to lose weight even without exercise with lower carbs. That is also something to talk about to the GP and maybe even investigate the Fast 800 diet for a couple of months which is used routinely now to reverse diabetes through weight loss after studies in Newcastle and Glasgow.

[Hiibilly in reply to PMRpro]

Thanks PMRpro, I will discuss it with my doc he is calling me again this pm. Since finding out about the weight loss I have cut carbs right back and very little sugar. My daughter still lives at home so we are doing it together protein and lots of veg and salad. We plan the weeks food so that we just buy what we need. I have lost 10 lbs already but the rheumatology nurse was concerned about that. I think it's like battle fatigue but talking this morning has helped. Just bombarded with things trying to take control of what you can but I feel robbed of so many things you enjoy. I have been here before and need to remind myself to be grateful, you all have great struggles you are dealing with and I am incredibly grateful for the time you have taken to reply. It also good to give yourself a break when you do feel crappie and remind yourself that it's ok. With love and thanks so glad you are all out there.

[PMRpro Ambassador in reply to Hiibilly]

That is brilliant! So jealous - I could do with losing weight. It's weight loss when you haven't been trying that is a problem. And some will almost certainly be just fluid.

It's why we're here ...

[2013mayo]

Hi,So sorry you are feeling down, things will improve.

As for your weight, just cut out carbs, you can have maybe one slice of bread or one potato occasionally, maybe twice a week, but it really does help you lose weight, also not too much fruit, it’s very high in carbs. My friends on this site really helped me understand the low carb diet, go with it and you will see a massive improvement, also it helps with your mood, cutting out carbs and losing weight really lifts your spirits.

Take care xx

[Hiibilly in reply to 2013mayo]

Thank you I have been trying hard. Since cutting back especially on sugar I have found that if I do have any my pain in hands and feet is much worse. It was my birthday last week and I had cake for the first time in ages I had horrible pain the day after which convinced me that low carbs was the right plan for me.