Hope or hopeless

[Leeleep]

I’m not doing well after 17 months since diagnosed. Im 74 but had a fibromyalgia diagnosis for 36 years before GCA/PMR. On prednisone, Actemra, beginners Plaquinil, Forteo and pain meds. Very depressed from pain and unable nor do I want to do things. Cooking is a major challenge and so I don’t do it. Hopeless and sad.

[Linny3]

Good morning

I am so sorry you are hopeless and sad over this pain syndrome you are in. I have the same story. Fibro for 25 years and now pmr for 20 mos. I am managing the pmr ok but when it decides to travel to a different part of my body I know I am in for some very painful days. I just started the plaquenil. I was wondering how long you have been on it and if you are noticing any difference? I have only been on it for 3 weeks, so not enough time to make a difference. The only thought I have is, are you taking enough prednisone for the pain?

I know what you mean about cooking. It gets to be almost impossible, along with vacuuming and other chores around the house.

Take care, know that others share in your suffering and will offer ideas for you. I will say a prayer for you today.

Lin

[Leeleep in reply to Linny3]

I thought I could come off the prednisone because I’m on Actemra. Lots of stress in life and dental work this summer. I was down to 2.5 mgs prednisone and doc dosed up to 8.5 . Plaquinil just a few days. Concerned about Actemra and labs . Very high Cholesterol and tryglcerides for a bird eater. Cheated on diet past two days and actually was feeling better on the 8.5 prednisone but the Italian food did me in. Being a good girl and eating proper today . This is all my fault for thinking Actemra was my magic bullet. Also, the baboon in charge in Washington, is making healthy people sick and the Parkland Shooting is my area. Then the Temple last week. And USA can lose its democracy if these mafia politicians are not taken down in Tuesday election. Oprah is actually knocking on doors. Obama is out on the Rd. Those in charge are passing a bill so Insurance that we pay for will not cover pre -existing. They are messing with our Medicare and social security which we paid into all our working lives. They brainwashed the low IQ population with lies and causing so much violence. So, I’m sure all this is effecting me. Trump is so disgusting he makes most people want to puke. Yup, too much to deal with and yes I do believe prednisone is the pain cure. Sorry for the political rage. I don’t know if I’m allowed to talk about that on here.

[PMRpro Ambassador in reply to Leeleep]

Actemra is a super-steroid sparer - but that is all, it doesn't replace pred and the best you can hope for is to be able to get to a lower dose of pred. About half of participants in the GiACTA trial were able to stop pred in a year - but it isn't yet known how long the effet will hold. And the other half needed some pred - and had flares when they tried to reduce pred too low. You can feel agrieved - it does work for some.

As for the rest - switch the TV off. I know, it is easy for me to say - but I have to live with Brexit and I live in the EU so it will affect me a lot. C'est la vie...

[Leeleep in reply to PMRpro]

In states we pick the health insurance we use for next year. I’m on Medicare which we can enroll in at a specific retirement age. We pay around $110 a month or more for that which is 80 percent coverage. We then purchase a supplemental insurance and the individual states allow the insurance companies to determine the prices. I pay $350 a month for that and we are not talking about medication. This does not include my husband. He’s in another program available but I’m too ill for that. I have to make sure that I’m in the best possible plan because if my side does not win pre-existing will definitely make a difference in my supplement. This cannot be ignored. I have to figure where to put my husband. He has no clue with this stuff. Two years ago he had a brain bleed and is pretty ok but not brain trainable. ie: new things, electronics , etc. Very difficult times everywhere, I believe but it’s really effecting me. I must not make a mistake on our plans. I may be stuck for life.

Hopefully my stress level will go down and there is a program which involves music, that is coming my way soon. Can’t explain and forgot the name but if it’s easy to do and cheap, I’m game. Time to find a good movie and relax. Thank you for your input. 💕

[Marijo1951 in reply to Leeleep]

This makes me so grateful for our far from perfect NHS. It would be terrible to have financial concerns on top of everything else. Also I can't imagine what it feels like to have both fibromyalgia and PMR and not to be sure where the pain is coming from. I was very healthy until I was struck down last year and just one lot of pain nearly finished me off until I was diagnosed. I do hope things get better for you soon.

As for cooking, I live alone and got into the bad habit of having my dinner delivered from one of the local restaurants nearly every night - sadly often Nando's. I don't know if they exist in the US, but their chicken with peri-peri chips is delicious and very calorific and, of course packed with the white carbs we are meant to avoid. Although relatively cheap, the costs were mounting up, so I've made myself get back into the habit of cooking from scratch every day. I have a bigger meal at lunchtime and try to make sure I have some soup or pasta sauce in the fridge, plus plenty of eggs, in case I'm very tired in the evening (wholewheat pasta of course!)

As for your President, I know what you mean though it does seem a bit of an insult to the blameless baboons! We're meant to avoid politics, but I'm convinced that one thing that started me on the PMR/GCA journey was my depression about the brexit vote.

[Rimmy in reply to Leeleep]

Also sorry you aren't too good at present - and I agree it is difficult to stay 'bright' anyway with the global havoc being caused by (mainly) men who should know a lot better ' I really love your baboon description - couldn't agree MORE and at least it did make me laugh !!

[Christophene47 in reply to Leeleep]

Hi Leeleep,

I am so glad you did express your political rage; It's important to get these feelings out; I share them completely. I think he is making many of us sick and depressed; a cruel monster.

It is off subject, but just wanted to say, I feel you.

[PMRpro Ambassador]

Sorry to hear you are so down - is there no-one nearby you can get together with?

If you are on Actemra why are you also on Plaquenil? And have you reduced your pred dose because of being on Actemra? Was the pain better at a higher dose of pred?

I identify totally with the not wanting to do things - though it isn't due to pain, it is plain lack of motivation and I believe it is part of PMR. If I were on my own I wouldn't cook - but OH gets iffy when hungry so I do very basic stuff, more than 4 ingredients and I lose interest. And cleaning? No...

[Christophene47 in reply to PMRpro]

Where do you think the lack of motivation comes from? Is. It part of the disease?

[Leeleep in reply to Christophene47]

Lack of motivation from the pain and depression. Endorphins don’t work and meds never have worked for my depression.

[PMRpro Ambassador in reply to Christophene47]

There is a lot of interplay in the neurotransmitter world - especially with dopamine and dopamine receptors which are known to be affected in autoimmune disease. It's still a fairly new concept though - but gaining ground. Inflammation and depression are now known to be linked and that probably accounts for the depressive mood part of a/i disease - and depression is known to result in lack of motivation even if you wouldn't say you were clinically "depressed".

[Grants148]

I am not at all surprised that you are feeling so sad and hopeless when you have been suffering a lot of pain for such a long time.please keep posting because there are experienced people on this forum who will try to help you and can empathise with what you are going through.Thinking of you and praying that things will improve for you xx.

[Grants148]

I am very grateful for our N H S, here in the UK,people sometimes complain about it but l feel l am so lucky to have been looked after throughout my life by our health service,it must be a great worry for you living in the states when you need healthcare.

[SheffieldJane]

I am sorry that you are so low Leeleep. You have definitely been better than this. Perhaps your complicated meds need adjustments.

Take care! I hope this resolves soon!!!

[Leeleep in reply to SheffieldJane]

Yes, I have been better and I believe I will be there again.

[Leeleep]

Thank you all for the input. It’s always good to hear what you share . My wonderful rheumatologist just called me and on a Saturday in this country that is unheard of unless it’s an emergency.

[S4ndy]

So sorry to hear you are so down. We are so lucky to have our NHS. I cannot imagine how I would manage if I had to pay for healthcare. Today's politicians make me very angry but like PMRPro says you sometimes need to switch off all the rhetoric and concentrate on being kind to yourself. Do hope the US population open their eyes and vote wisely in the mid-terms.

Heres hoping you feel better soon xxx

[Christophene47 in reply to S4ndy]

As an American citizen, so do I; I know HE contributes to anxiety and depression; especially anxiety. We have no sense of stability here, and when you're not well, it's even worse; I will get myself out to vote no matter what, but I think nothing will be positive until he is gone.

I am sure there must be a book on Illness and Politics. In any event, my best to you...

[Leeleep in reply to Christophene47]

Hopefully we get some balance of power back on Tuesday.

[karools16]

I got very emotional when you ended your post with 'hopeless and sad'. That's not a good place to be, but you do have a lot on your plate, and I really trust things will improve, for you, and SOON. All the very best.x

[Valnvaughan]

Hi

We all sympathise with these feelings. And we know in our hearts that it is pointless to feel sad, because that makes us feel worse....a viscious circle.

Have you tried Mindfullness training? My GP suggested it as I passed the 2 year mark. I used a book she recommended “ Mindfullness for Health” bought on line as an e-book. The course is 8 weeks, teaches acceptance and coping mechanisms. It helped me. I found initial chapters heavy going, but once we got to week 1 do this, I followed it carefully. It worked for me, I was a lot calmer, and coped with pain etc much better without pills! I still use techniques now 1 year on.

[Christophene47]

Dear Leeleep,

Also with PMR; into 3rd year; on 4mg Prednisone. I know what you mean about cooking; it was once a pleasure and now can't stand to think about it. Went with Home Chef weekly delivery, and my husband has taken over executing the recipes; still I feel lazy and diminished.. Identify with you completely.

Sometimes I wonder if 4mg is enough; started at 16mg which was very effective, but didn't last more than 7 months. At 4 mg., we are below what the adrenals would make on their own, without the adrenals picking up on production, we stay stuck in this bad limbo, feeling lousy both physically and mentally.

I have decided to stop seeing doctors and having constant tests unless a true emergency.

So sorry for how you feel; not the golden years we heard about.

[PMRpro Ambassador in reply to Christophene47]

If you don't feel at least half-decent re pain you need more pred. The whole point is to have enough to assure reasonable quality of life.

I had a long appointment with my cardiologist this morning - and the primary take home message from there was: QOL is EVERYTHING. So if I need 15mg prednisone to prevent the atrial fibrillation that accompanies a flare, I need 15mg pred. Because she has nothing better to offer me. I have 2 really quite special specialists!

[Christophene47 in reply to PMRpro]

You are right; I am going back up on my Prednisone at least as a test to see if I feel better. If my rheumatologist doesn't approve, I don't care; my GP is fine giving the prescription. Thanks; it was something I needed to be reminded of.