Frustrated and angry today!

Hello all,

Yesterday my head ache so bad after trying to get some exercise and family time. Today I went for another small walk. It was less than a quarter mile and included cruising an atique store. I was pretty tired when I got home and than on my way up the front porch my right knee just went to jello with a sharp pain. Ugh. So frustrating. I was just getting to the point where I had confidence going up and down steps again. So I pounded the hand rails for a few moments and broke down in tears.

Hubby asked what was wrong and he made a comment about getting old together and duel ice packs. Okay, he doesn't get it yet. Ice pack won't do anything for me and the jelly legs. I am on 60 mg of prednisone so I am hoping some of this is a reaction to the prednisone. Rhuemy admits they don't know always whether it's the disease or prednisone. There is not enough studies.

While at the antique store the rhuemy office called and said my vitamin d was really low even though I've been taking a supplement for the last year. She called in a prescription for a high dose vitamin d and said stay at 60.

My goal is to get to 10,000 steps a day by the end of July. I know I need to exercise my muscles and still not over do it.

Good news is I am learning and while I don't like the high dose of prednisone it seems from practioner experience, the higher dose and length of dose, has an impact on how long you are on steroids and relapse. The higher the dose the better. I hope this is true.

As I think I am having a weeping steroid day. Tomorrow I am going to try to play 9 holes of golf with my friends. It's been awhile and I am nervous as they don't know I've been ill the last few months. I've pretty much isolated myself from activities.

Anyway, that is my vent for tonight. Thanks for reading. I treasure the first week or so on the prednisone. Minimal pain and felt strong. Than side effects kicked in.

TJ

39 Replies

oldest • newest
  • Hi TJ2017,

    I am sorry that you had a rotten demoralising day. We have all been there, when you feel old and ruined, angry and hopeless. Nobody can say the right thing and you feel completely alone. It has to be said that your husband sounds sweet in what he said, at least he's trying to make you feel less alone. Prednisalone does make your moods roller coaster.

    You also sound like someone who drives yourself. 10,000 steps is a challenging goal at your stage in the disease. I rarely get there and I'm on 8 mgs and over a year into the disease. I have days when I have to lie down a lot. You need to cut yourself some slack and learn to be patient with this thing that has put the breaks on your life. My theory is that it tends to strike people who expect a great deal of themselves and for a number of cumulative reasons have fused. At the risk of sounding preachy, there is an opportunity for learning in all this. Time to reflect and make changes, look at priorities etc. it is an easier ride when you stop throwing yourself at the bars of the cage.

    I wish you luck with your 9 holes of golf tomorrow. Be honest about your condition. It will set people free to talk about what they are struggling with. Remember to pace yourself and cherish yourself. This thing will pass be ready to be a happier fitter you. Sending you all the best - onward and upward. 🌸

  • Thank you SheffieldJane,

    And you are correct. I feel like I am throwing myself at the bars of a cage and my husband, of 35 years, is very sweet and trying hard. He is worried, like me, and trying to sort this all out. We both like to believe we are "solution oriented" and in control.

    I clearly still have acceptance issues. I appreciate your kind post and advice. I am thankful for the support and online friendship. Otherwise I would be rattling the cage a lot harder.

    It is time to look at priorities. My daughter wanted me to go to the Monterey Bay Aquarium with her and my 3 grandkids today. It is one of the best places in the world and a little less than a 2 hour drive from my home. I had to tell her that there was no way I could handle a day trip such as that. 4 plus hours in a car, walking the aquarium and chasing 3 kids under 6? Pre symptoms, 8 months or so ago, that would of been an ideal favorite day. Still is I guess. I just can't physically handle it.

    So I thought something smaller like 9 holes (it's a tiny course) and perhaps that is too much as well since I had such a difficult time today with a light walk.

    Thanks again.

    TJ

  • Tj2017

    Wise words and sensible advice indeed from SheffieldJane. They certainly clunked my cognisant bell. I have had PMR for 4 years now and have been trying to "sort this all out" and "be in control"

    of this horror called PMR!

    Jane's words have made up my mind! If I can't do it, then I can't do it and nothing is going to change that so, instead of cleaning the house on a good day and feeling dreadful for the next 3 days to recover, the flipping house can have a bit of dust! And I am going to get a cleaner! The old adage " no pain, no gain" does not help with PMR.

    Look at it this way: Poly means more than one, or several. Myalgia means muscular pain which reduces the size and ability of muscles to work properly.

    Here is the crux: the heart is a muscle!

    Best not to compromise that one because we feel fake or stupid or lazy!

    Have more rest. Don't "do it"!

    Pushing it will make it worse.

    Hope you don't mind all this, it's mainly for me, but you are welcome to use whatever you want.

    🌺🌷

  • Thanks PMRandRA,

    I'll use whatever I can get. And yes the heart is a muscle and I find it hard to believe it is not effected somehow with the GCA and PMR, especially since mine can start to pound really hard when I try to do too much, too quickly.

    I like your determination not let inadequate feelings push me into doing something that is going to cause me to feel dreadful and ill for the next few days. Than of course, I just feel worse.

    Today, I am grateful for the happy moments in life.

    Wishing you a happy day!

    TJ

  • According to my first Rheumy, the heart can be affected to a greater or lesser degree so it is vital not to strain it.

    Take care 😃

  • For future reference: you can edit: click on the downward pointing arrow in the right hand box...

  • Thank you, job done.

  • TJ!

    SLOW DOWN!

    We are the same age and were all get up and go before THIS, so I know what it's like to have it stop. It is sooooo frustrating, I've lost my old life including my job. However, your dose of Pred is much higher than my 40mg so you will be getting oodles more of the madness of too much go, no stamina and emotions all over the shop. Your family and friends will have no idea what a hideous cocktail it is, so well done for bearing up. Keep crying that frustration out, but please don't take it out on your body, it can't do it right now.

    My question is - What are you expecting to be able to do and where does this idea come from?

    I know we're all different, but I can't do 10,000 steps a day on 27.5 mg and I don't even have the PMR bit. On 40mg I couldn't do any of what you said in your post (9 holes of golf?!) without a serious crash and slight return of symptoms. The Pred has a huge affect on your muscles and body that you can nothing about right now, no amount of willpower is going to stop that physiological change at the moment. Jelly legs could come on with nothing. The week before my Pred I was cycling to work 12 miles, ran 3 miles at the weekend and dug the vegetable garden, easy. On Pred my muscles don't hurt but if I try to lift anything, I will pull muscles and injure them. On 25mg I walk the dog for an hour and that's it and I have to have a sleep in the afternoon. I look forward to the day I can go to a supermarket and not have a lie down afterwards.

    The Pred is not a magic cure it is holding the inflammation at bay, while you hold up your side of the bargain and look after the body that cried for help in the first place.

    I know you will be having all this false energy and mind mess so it is easy for me to shout SLOW DOWN! But perhaps try to work on accepting that things are different now and the new you is having to wait to have its day. I wonder if explaining to friends what is actually happening will help you accept this is real, long term and help them to help you. Has to be much better than thrashing about in this isolated hell hole trying to pretend it's business as usual when it is not going to be for quite some time.

    The Rheumy says they can't tell which is GCA and which is Pred - It doesn't matter, either one is a reason to be very respectful of the consequences of ignoring your body signs. You don't need studies to tell you which one is which. Side effects are a sign your body has a huge burden to cope with and symptoms are also a sign your body has a serious problem and needs to be nurtured.

    Here's a new one for PMR, it needs an image boost - Protect, Maintain, Restore. Working on GCA.

    Good luck!

  • Hi SnazzyD,

    Wonderful post! I am so glad to have someone my age to share the journey of GCA/PMR with. Although this journey is not by our choice.

    In answer to your question - I haven't a clue where my expectations are coming from or even what I should expect. I just know I am pretty much housebound and feel bed ridden. I was not in great shape before I was diagnosed. Clearly I had been ill for sometime, yet I was still moderately active until after Christmas when the PMR symptoms suddenly erupted big time and I couldn't walk.

    I had expected erroneously that once on the prednisone I would be back to pre Christmas activities. It is very helpful to know your experience and difficulties with your muscles on the prednisone. For some reason, in my isolated hell hole, I thought it was just me being lazy and sorry for myself. Your experience puts my experience in a better perspective. I too may have lost my career and need to regroup. I should of gotten a better clue when the doctors put me on disability for 6 months. I just worry my muscles will waste away to nothing.

    Okay, so 10,000 steps is too much. Acceptance is key. Smaller goals based on listening to and caring for my body rather than a future image of super woman. Yoga, stretching, better yes?

    I still have PMR symptoms, especially the jelly legs and tight shoulders. Like the GCA headaches, they are worse with the more effort (spoons) I put out.

    I like the new image for PMR, "protect, maintain and restore." Just wish I had a manual with instructions. I too look forward to not having to lay down after a trip to the supermarket or a walk around the block.

    Thanks for your great advice and support.

    Best,

    TJ

  • Walking is good - but start with just a 5 minute walk, rest, 5min back. The rest in the middle is as important as the 5 min walk! If that doesn't leave you flat, add a couple of minutes - and keep doing that. Preferably with a day rest in between once you start to feel that yesterday was maybe about the borderline.

    I did aquafit AT MY LEVEL - not everyone else's! That left me flexible enough to go to a Pilates or yoga class. But both were very heavily adapted to accommodate PMR. Even stretching can be hard work when you have PMR! That was when I had PMR and wasn't on pred.

    But at present - relaxation is as important if not more so. It won't be for long though.

  • Acceptance IS key. Your body has told you, the old ways don't work any more. Put away the Superwoman cape, she's grounded for now, and see this as a work in progress towards to the new you. My fit body that wasn't as fit as I thought now has muscles like bits of string and wobbly bits in annoying places. That will change as it will with you, but all in good time.

    What about making a list of things you really want to do for you and not because of the result it'll bring or goal achieved? I was stumped.

  • Hi SnazzyD,

    What I want to do for me? Well good question and the answer drew a total blank in my head. Other than regaining my health, all answers revolve around me being there for my family.

    A good thought for today as it reminds me I have dropped my hobbies over the last few years, like painting and gourmet cooking.

    How about you?

    TJ

  • I'm still stumped about that one, which has alarmed me. How did it get to this??

  • SnazzyD,

    You maybe the other me across the ocean. I am alarmed too. I've been thinking about this all day, and I've realized that as as a "fix it" type of personality, I've focus (ok obsessed) on just trying to get my physical self where I believe it should be. My dreams of traveling, hiking, painting, exploring the world with my husband, children, grandchildren and friends were replaced with the horror of my husband pushing me around in a wheel chair. A burden to all that I care for and love. So I've focused on me, me and me. What did I do wrong? What is this disease? What can I control, diet, exercise, mind games? I researched everything- vasculititis, auto immune, steroid effects, muscle injuries, bone strength, cures, etc... , not to mention the overall financial impact.

    I can't say my mind set has changed. Maybe not as dramatic, yet still full of fear of the unknown that I can't control. I've forgotten for now, how to spend sometime enjoying what I like to do- other than being present for my family and that is often tough as I don't feel well.

    Today, I tried to slow down in a different way. I talked to my girls, 31, 27 and 22 and listened to their troubles, not mine. I looked at my stores of painting materials and sighed, "not today."

    Pacing, physically is important, yet mentally maybe too. I don't want to lose who I was physically and mentally.

    Perhaps, I need to start at ground zero again, and build from the person who I am today with this disease which limits me both physically and mentally. Sounds great! How to do this, I don't know other Than can't do it alone.

    Thankfully, I have this forum, the love of my family, and my faith in God to support me I just need a reminder, several times a day!

    I am thankful I am a learning being in this world and hope to help others as we walk through this journey together.

    Best,

    TJ

  • You don't have to stop doing things - hiking may be a bit difficult but travelling, painting and exploring the world aren't entirely out of the question.

    Mindset changes don't happen overnight - it is a long journey for most of us. But finding out how to live with the gorilla makes a massive difference because that empowers you to do other things. There are many new things to explore - but there are ways to manage to continue to do other things.

    One gentleman in the south of England bought himself an off-road mobility scooter so he could continue to "walk" the cliff paths. He said he was so glad he'd taken the plunge - he was no longer isolated but was able to continue his normal hobby.

  • Yup. My approach to everything is, make a plan. If that fails, make another one and so on. I have the sneaking suspicion that this condition is going to make me have to re-evaluate that life strategy.

    Yes, I feel completely broken and I have to go with the flow, there is no other choice right now. I think I've got here because I too lost the ability to do things just for me because everyone else's needs came first. The result is that now I can't look after anybody. Whoops

  • It is something we used to say a lot in the past - and maybe it needs repeating every so often.

    Whatever your role in the family in the past, now it has to be YOU first, YOU second and YOU third. It it unlikely it will be permanent but until you are somewhat better and have learnt to ride the bucking bronco that is PMR (or GCA) you have to look after you above all. If you haven't looked after you, you may never get back to being able to look after others.

    It is a very hard lesson to learn that you are not indispensable! Accepting it is probably even harder. There is a very useful little word in the English language and you have to learn to use it wisely: NO. Of course, preferably coupled with "I'm sorry, I'm not able to to that today/tomorrow/this week BECAUSE ... - but I hope it will be possible tomorrow/next week/next month" It isn't a total refusal - it is a qualified one.

    But don't be persuaded to do something you KNOW you can't manage! Finding it out accidentally is a different matter altogether!

  • Your muscles may well waste away to nothing. My biceps and triceps did. But they slowly returned and have not gone away again.

    Exercising will only make it worse.

    🌼

  • What about Gentle Calm Attitude ( easier said than done). Ha ha.

  • I'm with you SnazzyD....I don't have PMR either and am down to 10mg Pred and holding...at last!! but I struggle to do 10,000 steps!! Shopping wears me out too and I love shopping. Tj....you are right..acceptance is key. It's great to have goals but they must be flexible and do what your body lets you without overdoing it. I only really learnt this last year after being a bit "bull in a china shop" for 18 months...and it was this forum which helped me to come to terms with it all.

    By the way...I nearly died when you said you were going to play 9 holes of golf after reading what you've been going through!!!! :) Take it easy and good luck.

  • You might have PMR too. The Pred would hide the symptoms and pain.

    I don't understand why GCA alone would present so many PMR signs and signals - struggling to do 10k steps, shopping " wearing you out" etc.. all signs of PMR.

    Just speculation really, but take care. 🌸

  • Hi Tj2017. I can't imagine what it would be like to be on 60mg - the highest I've been is on 21mg and even then my head wanted to do so much more than my body was capable of! I suspect that may be the case for you but on a much higher level. I think with this condition there is so much too of fluctuation in emotions, bereavement of our previous life, and trying to establish a " new norm" in shifting sand! I agree with others, try to take it a bit slower, perhaps double check with hubby if what you're considering doing seems over the top at the moment. I know sometimes I have arranged so much when head feels right to find come the events I can't complete!! Also I'd agree to come clean with friends about what's happening to you. Perhaps think first what to say and how to succinctly explain, without boring everyone but also not minimising the condition either. Perhaps consider not doing the golf but meeting them afterwards for a drink? The last thing you want to do is have an accident because you're trying to get back to normal as quickly as possible ( although understandable). Have a good day with your friends- don't cut yourself off but be in control of how often you see them and for how long, to be kind to yourself. This stage will not last for ever!!

    After your post Snazzyd I thought about GCR. G- Gaining insight, C- control of eating, activity etc. R- renewal for now and the future. Not brilliant but both PMR and GCA opportunity for change and upwards and onwards!

    Jackie x

  • Thanks Jackie,

    I like your advice to meet my friends afterwards and share what's happening with them. I thought about it later after my post that if I wasn't feeling well and something happened, it wouldn't be fair to put my friends in that situation. Even if I just bailed early, they wouldn't have all the facts.

    I don't know the new norm yet, although I'll probably be on a high dose of prednisone for at least the next 5 months as I taper to a more PMR type dose. From what I learned today from everyone's post is not to expect any great changes in my condition for awhile. So I am working on acceptance.

    I like your GCR. Again, just wish I had a manual. My brain wants to be Wonder Woman. My body a jelly fish!

    Thanks again!

    TJ

  • Oh TJ,

    Sure I wasn't the only one reading your post and shouting, "no, no, no, you can't do that"! at the screen!

    60mg will make you feel you can rule the world, I know been there, but really you can't!

    As others have said, you need (for your own peace of mind if nothing else) to take on board that although your pains have magically disappeared you still have the underlying GCA which is doing its best to ground you.

    Yes you need to exercise your muscles, but they are in a delicate state, all that time before diagnosis they were starved of the necessary oxygen etc they require to function properly, and that's not suddenly replaced. In fact adding in the Pred can, for some people make them worse! So you need to nurture them and GENTLY.

    9 holes of golf may be okay so long as you have a buggy - otherwise you'll have jelly legs again.

    I know you want to get back to normal life again, but you have to remember you do have a serious illness, not something you may want to admit, but the sooner you do, the easier, both mentally and physically, life will be.

    No, your husband doesn't understand, but he is trying so give him a bit of slack, he loves you and is obviously worried.

    Lecture over! Take care.

  • DorsetLady,

    Thank you for the well needed lecture. As you can see from the posts, I still am having a tough time facing the fact I have a serious illness. I am working on it and everyone here is helping me tremendously.

    It is amazing to me that in Silicon Valley of California there is almost no support structure for patients with these diseases.

    I wish my pains have disappeared. They have been reduced significantly and more so when I take it very easy.

    Not sure if I'll golf or not, and I do have a buggy and don't mind skipping holes and just riding.

    I think proper exercise to strengthen my muscles, like yoga or walking might be a better use of my "spoons."

    And yes, my husband is wonderful and I was a little hard on him. He is worried and I hate to be a burden.

    Thanks again.

    TJ

  • Like all the others I think you are being far too ambitious at this stage of being ill. You have a serious systemic illness - and you need to remember that. I think you are trying to do too much too soon. You need rest to let your body have a chance to heal itself. If you had proper flu you wouldn't expect to do all this and the systemic side of GCA is little different to flu - your immune system is attacking your body instead of a virus.

    Be patient - if you don't learn anything else you will learn patience.

    Read all these links: rarainbow.wordpress.com/201...

    and then do your homework applying them to yourself. I suspect your husband gets it far more than you think.

  • I do 10000 steps a day or more as I had alot of mussle wasteing I built it up and lost some weight which put less strain on my muscles .I did used to get terrible headaches too but the steroids dehydrate you so I now drink 2 Lts of water per day and i hardly get them now it takes a while to work out what's best for you and your body xx

  • Hi TJ,

    what a learning curve for you and your husband.

    The posts said it all. To accept and change your lifestyle is very hard and takes time. You'll get better at it every single day.

    Yesterday was a day on the sofa for me. Unexpected again, but accepted very quickly. No energy, nothing. Now it's in the middle of the night and I wonder how this day will be. Maybe you'll have a good day with your friends golfing, hope so.

    I send you warm hugs and thoughts. Have a good one! 🌺🌷 🌺🌷

  • Thanks Akino for the warm hugs. Today was a better day thanks to your support and hugs. Acceptance, I just need to keep repeating this over in my head.

    Middle of night is becoming my friend as well. Wishing you a better night of sleep.

    TJ

  • I feel your pain, I have now managed to turn both my ankles (just as the left one healed I did the right at the weekend) and so have been housebound as I haven't been able to drive. I feel useless, even a short trip out yesterday to the local small store, 10 minutes there and I had to come home, take another shower and lie down I was so hot and exhausted. I am currently reducing from 60mg Pred and the side effects are awful. But like others have said I have had to adjust to giving into the bad days, the dog gets the ball thrown up and down the garden rather than a long walk and the kids get pizza If I'm not up to cooking. Housework can wait. Shopping gets delivered. Trying to defuzz my Pred head to plan ahead for the next few weeks at least with the shopping as it has become such a mammoth task to think of meals!!

    Be kind to yourself, 9 holes is lot of walking and swinging a club could really hurt your shoulders if you aren't very very careful x x x

  • I know this sounds like a cop-out, but I say just go with it. If you feel good one day, then greet the day! If you're not up to things, don't push yourself. Every day will be different and if you don't set expectations, you can't get frustrated or disappointed. Go with the flow. It's difficult when you want to make plans, because you don't know how you'll feel. But don't fight it. Doing more when you're not up to it does not make things better. I liken it to exercise - for many, the more they do, the body stays in better condition. But with this condition, the opposite is true if we're not careful. At least, this is my take.

  • Nymima01,

    Thanks for the great advice to "Go with the flow!" I did and had a great day.

    TJ

  • I'm sorry to hear you're having such a rough time. From what I understand this is your second or third month with PMR/GCA? Allow yourself to go through the five stages of loss: denial, anger, bargaining, depression and acceptance but keep in mind there's light at the end of the tunnel. I was diagnosed a year ago and believe me I went through all 5 stages. Out of nowhere I would start crying and I'm not the crying type. You must give yourself time and allow your body to tell you when to walk, when to sleep or relax. You cannot push it. You might want to do 10,000 steps but at this point in time your body might not. It's great to have a goal but listen to your body and go with the flow. Someday soon you will be able to reach your goal. Also, this forum is amazing! Read everything you find on this forum and you will not feel so alone. You will have better days ahead of you. I know it have been there, done that.

  • Thanks Kulina,

    I like to believe I am not they crying type either, yet as you posted, it is important to move through the various stages of grief. This is definitely a life changing disease and calls for acceptance. I have been reading through the forum and my post is very similar to many newbies.

    Today was a good day, so you were right about better days ahead!

    TJ

  • Oh gosh, kulina, crying! I cry at everything, babies, kittens, sad stories, happy stories!, if someone looks at me! If I perceive someone being horrid! Everything! I meed extra water to replace my losses.

    I guess my pred is working.

    😍❤️🌸

  • LOL PMRandRA, I guess it's also good for dry eyes too? :)

  • Hello Tj2017..and everyone who has replied to you what an Amazing post ..I sure feel for you as this is so me at the moment ..Angry ,Frustrated , exhausted trying to get to the Supermarket and having to go to bed for the afternoon after, and my highest dose is 17.05 of pred but trying to keep at 15.05mg. I saviour these moments it's 5am ,it's a Beautiful morning ,my first cuppa of tea and catching up with the last 2 days posts before the Day begins before my partner gets up I have just had 2days of Birthday Celebrations out of routine and my PMR knows it, but I was spoilt rotten . I had lovely Relaxing Bowen Therapy yesterday which has helped my headaches/Migraine but she tells me to let those tears flow as i am angry at what this condition had taken away from me and my Life with my partner.The replies to your post is Amazing and My Bowen Therapist has taught me ways to like myself more and to try to get other Family members to accept that I can only do certain tasks/jobs when I can and that,so usually after rest. Good Luck and Best wishes trish 29

  • Hi Trish29,

    Happy birthday and I am glad you were spoiled rotten. Sorry we have to share the same anger and frustrations at this huge change of life.

    Today ended up being a much better day so I am sending you a hug and hoping better days for you in the future. It is tough to keep the spirits high!

    TJ

  • So sorry to hear about your terrible awful miserable frustrating painful day. Hoping tomorrow is kinder.

You may also like...