PMRGCAuk
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Polymyalgia, Vitamin B 12 and Vitamin D Deficiency

Hi group of fellow sufferers.... I was diagnosed with Polymyalgia Rhumatica, Vitamin D and B12 Deficiency December 2016 and started on B12 loading shots and then three monthly top ups. My B12 has gone from 104 to 505 so a big improvement my Vitamin D levels also improved and in 10 months I have gone from 30mg of Steroids to 1 and am pretty much pain free now (fingers crossed and early days too). I have done and taken part in a lot of alternative treatments including sound therapy, breath works and have seen a natural practitioner of medicine who has prescribed supplements. My question is regarding the chronic fatigue that comes with both Polymalgia and B12 deficiency. It is so debilitating that it is looking likely that I will have to give up my teaching job as I am unable to manage the fatigue. I have to go to sleep at least twice during the day and I never feel as though I am fully awake just totally chronically exhausted all the time. Does anybody have any suggestions or have you had any success with curing the fatigue? Its making me feel very low and I feel incapable of living my life normally. Any suggestions of information would be gladly received. Thank you Val

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I have the same as you with the addition of underactive thyroid. I’ve had PMR for just over a year and am now down to 5mg. I have to say that I am nearly always exhausted. I wake up in the morning and still feel tired after a good night’s sleep. Sorry I cannot be more encouraging. The only answer as far as I know is to manage your life differently - in other words rest as and when needed. I keep hoping the fatigue will improve - some people on the forum do improve I believe eventually. I hope one day it’ll be me!

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thank you for sharing and good luck

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Hello Carrott1 can I ask whether you work and if so how you manage the fatigue? I have continued working through the last 10 months but I just don't think I can do it anymore..........

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No I’m retired. I do voluntary work one day a week that’s all. I’m sure I would struggle to do any more.

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I think this is the big mystery of Auto- immune diseases. Doctors are not even keen to talk about it because they just don't know. You get a raft of tests, sleep Apnoea is mooted and various other things that could possibly be your own fault but it gets nowhere. You just know it's part of the disease. I have to sleep or at least lie down with my eyes closed at least once a day. Like you I try supplements etc. I find that a walk enlivens me a bit and improves my mood. I feel better now that I have surrendered to it. I say no to things I'd love to do but know I can't. I used to meet up with pals but I've let that go. I used to find amazing reserves of energy when I cared for my grandson, that does make me think that there is a psychological element to this. I'd collapse when he went home, but for me it was like being plugged into the mains. I was doing exactly what I wanted to do, playing, crafting, painting and cuddling with a two year old I adored. Sadly the family has gone abroad for a year at least. I think I could pull it out of the hat again though.

Perhaps there is something about doing exactly what you want to do?

I was a full time working mum of three, I always had some further training on the go, Homoeopathy, Person Centred Counselling etc. I did voluntary work with the victims of crime and with the victims of domestic violence. I was a part time University Counsellor. It was all good fulfilling stuff, but it wasn't playing and making collages and painting papier-mâché models and I absolutely loved that. The lightness of it, the childlike part of me that was still there albeit a bit starved of attention.

Teaching must be utterly draining! I am perhaps not expressing this very well, but in the run up to this disease a lot of us had work stress or bereavement or family stress, or caring responsibilities. Latterly I looked after my mum with Dementia for the last 7 years of her life.

Perhaps the learning in all this is to stop living for other people and start asking " what is it that I really want to do with my life, for me? "

The answers might surprise you.

Sorry if you weren't in the mood for this and it is difficult to break free right now, money etc. But I imagine that this deathly fatigue has something to do with all of the above. Believe me if there was a pill I'd pop it. I am not depressed, just tired and thinking a lot about me and my life.

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thank you so much for such a transparent and honest response and for sharing your story too. I have been under immense stress for the past 10 years, I went to Uni in 2008 to do a Post Graduate course in Psychotherapy, whilst still teaching three days a week at a local school, three young children at home and the course was very challenging for me academically so lots of anxiety over two years fear of failure mainly..... I have pushed myself so hard and done far too much over the 10 years, Yoga Teacher Training, Meditation and Mindfulness Teacher Training, Therapeutic Yoga Training, Worked in all kinds of settings as a counsellor, MIND, School counselling, College counselling and have loved every minute of it. My teaching work at a large independent school outside London has been very stressful as most school teaching jobs are.

I am very interested in the link between PMR and stress as this seems to be a very common thread in many individidual cases. A re-accuring theme over and over again that the medical profession just do not want to acknowledge. Val

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I agree. I believe stress played the biggest role in my development of autoimmunity. I think it's vastly underestimated. You can change your diet, exercise, but if you haven't learned to adapt to stress, nothing will work.

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Hello,

Yes I believe it was stress that caused my PMR My son was psychotic and took drugs and then took his own life,I cannot tell you the stress in coping with all that

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So sorry for the loss of your son. Absolutely devastating.

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What a heartbreaking story moskin. You are here and you matter. This time is yours now. You will get better it's just that you have been on high alert for so long. Bless you. I feel sad for all your loss.

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Thank you for your kind words,yes it’s hard and taken it’s toll,PMR for 4 yrs and possibly Fibromyalgia as well,it’s now taking it out on my body

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Think of this whole illness as a period of recovery. The damage has already been done. It is your job now to cherish yourself, rest and get well. X

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I will,thanksx

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SheffieldJane Agreed!!!!! I certainly hope I can see this as a learning experience. But PMR is such an unforgiving teacher.

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Hello Moskin I am so incredibly sorry to hear of the loss of your son, so much terrible suffering..... x

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Hi Mariemcdo, i am very convinced that the solution to treath PMR (and lots of other disease) is situated in the gut (in your immunesystem). Go find a Doctor who does Functional Medicine, they look upon your body and mind in a different way. I'm a believer because i've been suffering from PMR and now, i'm free of it. Best of luck and best wishes, Herman

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Hello Heja1801

Thank you for your response. I did just that a year ago and saw a functional doctor and we have done a lot of testing of the gut, leaky gut and healing it with supplements and there is a huge difference. I believe that everything starts in the gut after all it is our second brain!!

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hello again Sheffieldjane I wanted to share with you one of the most successful of the alternative treatments I have had and practised for the past 20 weeks (I have explored a lot of different ones!)

I visited my osteopath originally in December 2016 when my pain started as I thought I had pulled something in my lower back causing my hamstrings to hurt so much. He told me my back was fine but that he noticed that my breathing was all wrong and he suspected that the pain I was experiencing in different parts of my body was due to oxygen starved cells. To be honest I did not take much notice, predominately because I did not understand what he meant but he insisted that I buy a very small book called 'close your mouth' I did and having read it I started to notice that I mostly breathed through the mouth, dry mouth in the morning and heavy breathing through the mouth during daily exercise and walking.

I want to visit him again to discuss his theory, he is no ordinary osteopath and has huge experience in healing and breath work. So I promised him that over a period of 8 weeks (school summer holidays) I would direct all of my attention on to my breathing. I asked my family to watch how I breathed and to notice any heavy mouth breathing. After 8 weeks of practise nasal breathing became easier, a more relaxed breath, no hyperventilating, no dry morning mouth and most incredibly 80% of my Polymyalgia pain had diminished as a result of this breathing technique. This is what he believed would happen in fact he was so certain of this that he gave me my two appointments free of charge.

I know that this may all seem just a little weird......... but I thought I would share with you it may be something that might interest you?

I am seeing my Osteopath in 2 weeks to report back on my progress, Val

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That's so interesting, I'm sure my breathing isn't correct, going to try to that thank you for posting

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Hi Kate1978 I hope its okay to copy you into several links that discuss the breath and the benefits of learning to breath properly. I am not promoting anything for myself I am just sharing something that has been hugely valuable to me and I am sure that this is what this forum is about sharing and discussing. We are all here to support each other, Good luck and enjoy the info and trying out some of these techniques.

gaiam.com/blogs/discover/br...

breathingremedies.co.uk/201...

breathingremedies.co.uk/201...

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Thank you will study them x

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Sorry - I really can't ignore this:

"When we breath through our nose we directing oxygen into the cells rather than the blood".

Whether you breathe through your nose or your mouth the air goes into the lungs and it is there that the oxygen is taken up into the blood to be transported to the cells all over the body.

I'm not arguing that learning to breath well makes a difference - but that is not the reason!

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Hi PMRpro, this discussion on mouth vs nose breathing is interesting. I found this article recently and forwarded it to my son as my grandson is a chronic mouth breather due to a chronic plugged nose from allergies. Let me know what you think of it....if the link works.☺

oralhealthgroup.com/feature...

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Can't help feeling that this is one extreme of a chicken/egg situation. The Wiki article is pretty unbiased in that way.

en.wikipedia.org/wiki/Mouth...

Does the mouth breathing CAUSE the typical facial structure they describe - or does the facial structure/nasal problem lead to mouth breathing? All of us mouth breathe at times - it achieves a faster filling of the lungs. If you block someone's nose, they will breathe through their mouth - even babies at the breast break off to gasp for breath if they have a cold or the breast blocks their nose, one of the major problems for large-breasted women who breast feed (been there, done that!).

Adenoids will lead to mouth breathing - and a typical facies which improves if the adenoids are removed. But there are other causes - like your grandson's.

Mind you - the bit about nasal decongestion exercises in that article might be worth a try with him. Because the blocked nose bit could be a vicious cycle for him couldn't it?

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Thanks for the feedback. Perhaps it's not as worrying as one might be lead to believe.

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I doubt it is quite as bad as that article seems to suggest. And a good dentist or paeds specialist would be concerned if it were I think.

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👍

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“Perhaps the learning in all this is to stop living for other people and start asking " what is it that I really want to do with my life, for me? " “

Wise words indeed. My PMR was caused by stress I’m sure. My son’s alcoholism took its toll on me and wham! PMR and huge colitis flares. Now my partner’s MS is deteriorating and although we don’t live together it has a huge impact. I am trying very hard on all my friends’ advice to “look after me”., especially as I have now developed vasculitis. So pulling back and thinking “what is it that I really want to do with my life, for me? " really resonates.

Thank you Sheffieldjane.

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Hi kezzbabes

I'm sure that it stress related, mine too came on as I was struggling with my sons alcoholism

I don't know anyone else that has it apart from on the site, so glad to hear other people's stories, I've been on the steroids for 4 years and tapering down, hopefully getting close to 2 and a half soon , but have to do it very gradually or I get ill as my adrenal glands stop working

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Not long to go then kate1978. Nearing the end of your PMR journey.

Stress really is an awful thing. I keep telling my kids and friends not to stress too much about things as it will eventually affect their health. Easier said than done I know.

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Not sure I'm nearing the end, it was fairly easy to get down to 10mg but much harder to go down from 5mg has taken me a long time to get to where I am now trying to get down from 3 and a half to 3 then from that to 2 and a half

Also my doctor says I must keep taking the alendronic acid until I get off the steroids

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Thank you for sharing kezzybabes, it really makes me feel more and more that stress plays a major role in triggering this chronic disease.

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There’s an enormous value to being able to share/vent the way we do on this forum. We have some extremely strong, capable contributors who have given almost everything they have to others. The more you are depended on and admired for strength, the less able we feel to appear less than super human. What do we do about this? We keep on keeping on. Sleighing dragons and keeping the wolf from the door. We don’t give up but our bodies do. We have found our way to this forum where we can anonymously speak our truth. My Halloween wish for you all is for your pains to be few and your hearts to be light, to share treats with others and for nothing to go bump in the night xx 🎃👻🎃👻🎃

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It does interest me and it does make sense. Thank you for posting. I love to learn something new. Yes let me know how you go. I really feel that I see you.

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I found this:

"Values of less than 200 pg/mL are a possible sign of a vitamin B12 deficiency. People with this deficiency are likely to have or develop symptoms.

Older adults with vitamin B12 levels between 200 and 500 pg/mL may also have symptoms."

Maybe you need your B12 shots more frequently? This happened to my hubby's Grandma, they increased her injections to 2 monthly, and her fatigue improved.

30mg to 1mg in 10 months? Wow!

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Hello, very ingesting this stress thing and not being true to ourselves in the persuit of others or external achievements isn't it?

Perhaps with such a rapid reduction of Pred your adrenals haven't woken up properly yet. If they are not functioning fully, you can feel very low and tired. Has this fatigue been the same throughout or has it got worse and if so, st what dose? It may be worth asking for a test to see where they're at; lots of people on this forum have done that. With the B12 being the culprit, I'm not so sure it is the main cause. I used to give shots of B12 to people every day and got to know them and whilst some needed to go on 8 weekly top ups, people's fatigue wasn't on the the same scale as yours to the point of sleeping in the day a lot.

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hello SnazzyD I have been feeling pretty good for about a month and had noticed a massive change in pain levels. (I was on alternate 3/2mg per day) I am on holiday at the moment and woke up every day pain free so dropped down to 2/1 alternate days and the fatigue came like a sledge hammer...... really bad. Still very little pain. My GP is lovely but seems to know very little about this. I will be back in the UK on Monday and will go and see her and have bloods done again.

Thank goodness for this forum, its been hugely helpful but also very sad to hear of so many women out there suffering like this!

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Have you tried cutting down by half a mg instead of whole ones? A jump down from 3/2 to 2/1 is about 30%/50% less which is quite a lot., unless I've got my sums wrong. I am also nowhere near these dizzy lows yet, so more experienced low dosers might care to comment.

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Have you tried the DSNS taper or any of the others? Look at the pinned post on the right of the page which shows several different taper schedules. "Steroid Taper Web App"

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Are they sure it was PMR? Both low vit D and low B12 can lead to PMR-type symptoms. That would account for the improvement in that side. But if the low B12 was due to pernicious anaemia then the autoimmune bit of that is still there. Also, as Snazzy says, maybe your adrenal function hasn't caught up with the reduction in pred. One form of PA is Addisonian which is treated with corticosteroids - so did you feel better at a higher dose of pred?

But, personally, I think this may be the pointer: "I feel totally burnt out". Has anyone mentioned burn-out syndrome to you? I developed it about 19 years ago - long before PMR - and the fatigue associated with that was overwhelming. While at the time it wasn't recognised that it was not only high flying executives who suffered the one description I had for how I felt was I felt as if everything inside was burnt like in a forest fire.

I saw a psychiatrist for ages, don't know if he helped or not, but eventually I was referred to the clinical psychologist who worked at the GP practice. That was where the breakthrough came. But I know, and I can feel, that when I'm being overloaded the empty burnt feeling can swing by even now. It tends not to last long and the fatigue is nothing like so bad but it is there.

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That is really interesting PMRPro, literally " burnt out". There is something Post Traumatic Stress Syndrome about the return of that burnt out feeling. I get something similar with a wave of random terror that dates back to the height of my particular family stress when I was pretty frightened. I just nod it past now, it doesn't need my attention, it's an old scar twinge.

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Hi PMRpro The Gp just says its part and parcel of the disease, Flu like symptoms, but mine don't feel like flu I feel as though I have nothing left to give, no energy no vitality, PMR feels like burn out to me! I will ask her about 'Burn out syndrome'

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There are degrees of everything - and I think she is just not listening/understanding. I've had both on separate occasions - and what you are describing sounds more like burn out than the joys of PMR!

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Have you had a good thyroid work up?? Sounds like it could be way out of whack...

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It sounds like there is a strong connection between PMR, overachievement and caring for others. People pleasers the whole lot of us! Just guessing and generalizing of course.

What brings us joy is the question that we must answer. How ‘bout we all go to clown school, watch comedies on Netflix or take laughing yoga? Perhaps we have to just lighten up and stop taking ourselves too seriously.

Fatigue and Pred head were enough reasons to sell my business as a financial advisor to school employees. I am also the founder of a charity that has distributed over10,000 prom gowns and $40,000 in scholarships. Making a difference in the lives of urban girls brings me fulfillment. PMR is making me focus on doing more of that. However, four months into the illness and I’m still too tired to do much of anything since I exercise in the morning and run out of gas in the afternoon. Setting goals for the future helps me possibilities that hopefully will become realities.

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PACING Sandy - your mornings need breaking up a bit!!!!!

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There’s a unique thought! I’ll consider various possibilities. I lifted light weights with a trainer this morning for a half hour. Did errands and a little food shopping. After my short rest I walked my dog around the block. Up since 3:15 so early to bed after trick or treaters.

Do you celebrate Halloween in Italy?

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Mercifully not very much!!!! I did have the tiniest witch at the door a couple of years ago, what a sweetie. She must have been all of 2 years old and big sis or cousin had decided to take her round the doors in the block of appartments. Tha's the only time. Probably more in the towns - we live in a village.

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Bless... :-)

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I am a total people pleaser! So exhausting........

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Hi Sandy, That's a bright note you just brought us!

Future goals can be tiny though, like at 4 pm I am going to get off this sofa, put my boots on and go for a walk in the Autumn sunshine and enjoy the joyous beauty of the big old trees I live amongst. 🍁🍂

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Oh SJ, thank goodness for a goal I can actually aim for.

Have found this thread rather sobering. Life generally has been (as ever?) a rocky journey, full of twists n turns. Main lesson = always expect the unexpected. I also used to be a teacher (total stress!) and stopped early, many years ago, due to what felt like 'burnout', which felt like the biggest stress of all.

But seeking to do "what I would like" rather than pleasing others, is not easy. Sometimes duty gets in the way. Then much of what I might like is not attainable for various reasons. So compromise, or making the best of a bad job, is essential. And often I'm not really sure what I would like, or which choices would lead to better or worse outcomes. That uncertainty is a source of stress.

I suppose some sort of hope needs to be available. Other than that, what I try to aim for is some sort of serenity. Moving gently outdoors, focusing on the present moment, amongst trees - sounds perfect.

Stay well.

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Hope you enjoyed your walk. Boots? Where are you? I wore a heavy sweatshirt and sneakers when I walked my dog around the block. In NJ during the week and NY on most weekends. Walk way more in NY...much more interesting!

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Yes I did thank you. I wear suede shoe/boots in the winter, practically flat yet still stylish. I've got various colours. They are so comfortable. I find that I have a very low tolerance for any discomfort now. I live in a neighbourhood with streets lined by beautiful, huge, mature trees. They look stunning at the moment. I often have the streets entirely to myself. I would love to visit New York one day. In my head it's Christmas in the 1930s, that's when I would especially have liked to experience it. I'm a bit of a nostalgia freak.

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Comfort is key! I have retired my high heels but did get a few chunky ones for dating. I’m 5’2 and I have a date Thursday with a Dr. who is 6’8! Heels would help but not with PMR and osteoporosis!

Terror attack in NY today. Horrible 8 killed, 15 injured. My son used to work in that neighborhood. Suspect has a Paterson, NJ address. I grew up in that town. Unfortunately, NY is a far cry from the thirties! Dream on my English friend!

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I hadn't heard about the terror attack Sandy. It makes me despair sometimes.

I hope your date is a big success - don't tell him about PMR yet, it will dominate everything. That's what this space is for. You look wonderful anyway, no one would guess that we are hanging on by our fingernails.

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Sandy, many people think I'm 6'6" tall. In fact, I'm only 6'0". It's just that I have a long face... ;-) :-D

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6’6” is too tall! 6’ is a perfect height, long face and all!

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Ha, Sandy! :-). To mis-quote an old saying: 'Flattery will get you everywhere..' ;-)

Good luck with your date! :-)

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Thanks

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Agree SheffieldJane - there are many places i would also like to visit but say in the 1920s-50s - not sure they would resonate in the ways I would enjoy most now ... but yes I know everything is constantly changing - unfortunately not always in the 'best' of ways. This has been a very interesting 'ambling' thread.

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Sorry to hear of your struggles Valmacdon. I've had PMR for 2 1/2 years and have only dropped to 10 mg having started at 40 mg. I've had 3 flares along the way. However, the main reason for the slow progress is my sensitivity to drops. I had to limit my reductions to .5 mg once I reached 17 mg.

I have fatigue, often debilitating, during the first few weeks of each drop. Once I get to the latter stages of the Dead Slow Nearly Stop it tapers off.

Stress was most likely the major contributing factor to my developing PMR. I was in an extremely high stress job in health care administration. Although I had worked in the field for over 30 years that last position was over-the-top stressful.

Although you're pain free I can't help but wonder if the drop from 30 mg to 1 mg over 10 months may have been a little too quick. None of the pros on the forum have made any comment in that regard so it may not be relevant.

Best wishes for on-going improvement.

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I did - but perhaps not clearly enough "maybe your adrenal function hasn't caught up with the reduction in pred". And so did Snazzy.

But you're right - it is very relevant.

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Sorry, I didn't make the direct connection. A little too subtle for my very slow brain. 🙃🙄

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Don't be daft!!!!!!! You obviously need some warmth...

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I just returned to Panama a few days ago! It's beautifully sunny and 32 C. Cold is not an excuse right now. 🌞☀🌞

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I agree, stress seems to get us to the PMR stop!

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Thank you for your response and very interesting to hear that dropping can cause the fatigue....... I will speak to the GP about that next week. Can you explain to me who and what is a Pro on this forum? Thanks

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It's not the only cause, but dropping certainly does cause or intensify the fatigue. In my case anyway, and seems common. Even by 0.5mg. No idea what the mechanism is but it definitely happens. One of the biggest downsides of this condition.

Pro = professional - not always used strictly literally. I think, on this forum, Pro refers to a few of the more knowledgeable and long-standing contributors. Two that spring to mind immediately are PMRpro and Dorset Lady, otherwise sometimes referred to as the 'aunties'. But the forum generally, apart from being a source of support, provides all sorts of nuggets. Best thing is knowing you are not alone. And learning about other people's experiences is worth a lot.

Cheers.

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...and Sheffieldjane!😉

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Hear, hear! ;-)

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There are a few "pros" on the forum who are very knowledgeable and experienced on the topic of PMR and/or GCA. Some of the names that come to mind are PMRpro, DorsetLady. Celtic, KateGilbert.

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More often than not if someone says "Thanks Pro..." (for example) it is me - my username is PMRpro, chosen because, as I say on my profile, after 13 years of PMR I could be called a pro at it. I have worked in the healthcare and medical field all my life and do have a solid background in physiology etc - and nearly 10 years of research and reading about PMR and GCA. I also am a Patient Research Partner with a research group in the north of England.

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I have had PMR for 1 year and 8 months. Currently at 11.5. I was working full-time in administration with school age children. I am now down to 4 hours a day and will retire in May. This was not my plan but I can't physically and cognitively do the work. At best I am at 50 percent of my old self. Any kind of stress just deflates me more. I come home and rest and then pace small jobs. Everything is done in small bites. I have about 6 hours of active energy and work takes 4. I hope retirement will allow easier reduction. Rest seems the only answer for any set back and careful reducing. I won't allow PMR to ruin my life but it has changed everything

I appreciate this transparent sharing.🎃

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I have GCA + other random aches - (a bit of PMR?) Trying to get down fr 9.5 to 9mg. 50% of old self sounds about accurate to me. Or even less? Certainly does change things. Guess we must learn to accept that and prioritise, so that what energy we do have does us some good.

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I agree with the 50% analogy BonnyQuine - that sums it up for me.

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I feel the same, about 50% of my old self. It’s OK frenzy wasn’t that appealing in retrospect! I am doing more shopping in retirement.

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Yes retail therapy! Even second hand stores in retirement. 😁

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I've never understood the term "retail therapy"- except as aversion therapy...

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You must be missing the gene 😊 one of my daughters has it but not the other.

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Strange - mine are the same! Their paternal grandmother had it I think, skipped over the boys but resurfaced in my older daughter! T'other one is just like me - turns a shilling over 20 times before deciding not to spend it!!!!!

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I'd love to meet you someday but we won't plan to shop. And you don't eat carbs so drinking tea I guess lol.

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I don't REFUSE to eat carbs - if they are worth it, I'll eat them for a treat...

I've met people from the forums all over the place - it is great fun :-)

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I love a bit of Retail Therapy - must be my 'feminine' side..?! ;-) :-D

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Ooooh - you are awful...

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You're beginning to sound like Pastit (Pete) :-D Back later, off to do some RT... ;-)

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Now you're talking, bunnymom! :-)

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On line shopping when I can't sleep. So lovely when parcels arrive. However, I think that someone needs to confiscate my iPad, all the postal delivery drivers know me now.

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I love to come home to packages on the porch!

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Btw omeprazole can cause B12 deficiency. webmd.com/heartburn-gerd/ne...

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Interested in the mention of vitamin b12 and d. I have just had all the classic symptoms of Polymyalgia - suffered pain and stiffness for month before diagnosis. 2 weeks later - taking the prescribed medicine I am much better - walking 7 miles a day. My query is - this came on suddenly - would being vegetarian contribute at all or lack of any vitamins?

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Doubt it - most of us are carnivores!

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Have you had your magnesium level checked? Low magnesium can make you tired so can other deficiencies

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