Happy New Year to you all. I hope you are all doing as well as you can be and were able to enjoy Christmas. I know it's such a busy time and so much is expected of us.
My husband finished work on the Thursday before and the children finished school that day too. My daughter had been fighting a cold for about a month on & off and my husband's work colleugues had all been ill, so it was inevitable that he was ill immediately as he finished work and is still recovering. However we did manage to make the most of it and at least we were all at home together, as our eldest was home from uni.
Anyway, the whole thing hasn't helped my fatigue at all. Last year got off on the wrong foot with my meniscus tear in January requiring surgery and then an abcess that required root canal work and the fatigue become crushing from there really. Apart from lupus, sjogrens etc, I am also nagivating the perimenopause and possibly aneamia - my last methotrexate monitoring bloods were a little off and I need my GP surgery to check B12, iron, folate and vitamin D levels - they haven't been checked for years.....So my lupus could be worse and all things considered I'm doing OK.
My GP surgery got my Consultant's letter asking about the blood tests, at the start of December and they haven't been in touch. Today I tried to call to book the bloods but they were too busy, so I requested a call back on their system but that didn't happen either.
In the meantime I have started taking a supplement - at my Consultants suggestion. So I bought Solgar B Complex 50 - High potency - which contains folic acid and B12 as well as others. I also taking a food supplement that contains various vitamins and minerals. A month on and still no better....wonder what the bloods will say.
I have also received an appointment for a second ECG that was suggested last July. I am kind of surprised to get an appointment for mid January - thought it would be a lot longer. I have worn a 24 hour minitor which picked up periods of tachycardia (2021) and I've experienced heart racing moments, breathlessnes, I've had 2 episodes of nearly fainting. Plus my first ECG in 2014 picked up that I had one heart valve that had a mild regurgitation and three with trace.
I guess my point is, whilst the rest of the world is making new year's resolutions which invariably include diets, losing weight, exercise, making loads of plans and hoping to have a healthy 2023, etc we start the new year with the same rubbish, the same worries, not enough energy to do what we need to do etc. Same old, same old. With an acceptance that that is just the way it is for us.
But if anyone has any miraculous tips for boosting energy.........
Wendy x
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Wendy39
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Hope you get your tests sorted soon.I would give you the tip to stop taking your B complex supplement until after your B 12 and Folate tests.
If you were just deficient , or very low before the B complex the new supplement could cause inaccuracy in your result . Or , just knock you back into borderline normal readings which means you GP will decide everything is fine and not do any other tests or other you a more efficient treatment.
Now , some would say , if the oral supplement has started to I prove the results then it would be enough and that's all you would need to keep taking.
With B 12 deficiency it isn't quite that simple. An oral supplement may be enough to keep your results borderline but if there are absorbency or functional issues it won't take you above that and the lingering Fatigue , recurrent anaemia and functional symptoms caused by low B 12 including , cardiac and thyroid issues would continue.
If you get an accurate low or deficient reading at the start you are more likely to be given a more efficient long term treatment of injections or supplements and have monitoring that will help the symptoms more.
As B 12 deficiency and Pernicious Anaemia can happen more often in certain medications taken for Lupus , and can be linked to Lupus as a condition because of the effect it has on digestion and absorption of nutrients it's important to get those tests but get them in the right circumstances. As B 12 issues can also have a big effect on heart function it can also be part of the cause for the increase in tachycardia and palpitations you are experiencing with your valve issues.
I know that my own B 12 deficiency anaemia had caused a big increase in my Tachycardia) Dysautonomia syndrome symptoms and my neurological pain . The injections , rather than oral supplements, also brought a more rapid reduction in those symptoms and the Fatigue too.
Good luck with this year's health struggles and I hope you family are feeling better , Bee
My B12 etc hasn’t been tested for 5 years. It was middle of normal range then.
I hadn’t thought about adding supplements before the bloods and that skewing results. I was so desperate to feel better I just started taking them straight after my appointment in mid November.
I need to try to get an appointment for bloods again.
My Grandma had RA and B12 deficiency. She had three monthly injections and we could all see the difference those made to her.
Thank you again for your helpful response. I’m really grateful.
Yes , it's worth it just in case . The GPs have a very bad knowledge of B12 deficiency and PA. So , will have a habit of not testing for it when it is one of the most dangerous deficiency issues.
I'm seronegative PA, I could hardly walk by the time I was tested. With neuro symptoms the NICE guidelines are that you should have the injection every two months not three , so keep an eye on your other symptoms. And you obviously don't get the B 12 retested to check if you still need it , as obviously it will be high at first another thing some GPs do . When you are on the injections you stay on them , and believe me you feel it when you start getting low again . My Fatigue hits back in about week 6.
Be aware that no amount of B12 supplements will work if you’ve lost or have faulty/damaged stomach intrinsic factor due to AI disease!👆😱😩
Like you I take all sorts of vitamin supplements particularly high doses of B12, a water soluble vitamin but I was still feeling TATT, ( “tired all the time”).
Blood tests showed that my levels were less than normal!
Very low.😱
GP confirmed that I wasn’t actually absorbing B12 through my gut so three monthly, high dose B12 for IM (intramuscular) injections are prescribed to dose me up.
[Cobalin -H, hydroxocobalin) have been prescribed for life!👆
Feel much better now but you maybe in the same position with this problem?
Having an inability to actually absorb it so you may need vitB12 injected periodically for life + associated blood tests to confirm your level.👆
My B12 levels were middle of the range when last tested but that was 5 years ago.
My vitamin D was done a few years ago and was well below normal range. I added a supplement but it hasn’t been tested since.
I guess I’m worried that these will come back normal and I won’t have any answers or solutions! I just find the fatigue the most frustrating thing of all!
Big thank you for taking the time to respond. I am grateful.
By the way, not sure if it's relevant or not, but I do get bowel symptoms with my lupus flares, my GP says Lupus with an inflammatory bowel process. So I am aware that it's is a possibility that I am not absorbing what I should be. The bowel being the home of the majority of our immune system is also linked into this, I'm sure. Chicken and egg situation.
I wish I could help you with regards to improving fatigue and boosting energy, 12 years and counting 😫 and I’m all out of spoons trying to get over a nasty virus that won’t shift, xmas has caught up with me and as usual there’s always fall out from it, virus + Xmas was not a good combination 🫤! I hope your hubby and daughter recover soon, these viruses seem to be real hangers on!
Actually come to think of it have you considered HRT which could help a bit with fatigue if you’re peri menopausal, just a thought as I’m supplementing with Oestrogen gel (Sandrena) which helps me sleep better and no more hot flushes which I have to say is a real treat after 8 years of awful sweats !, it’s taken a while to find the right one, just a thought.
I don’t feel excited or full of hope at new year like I once did, nothing changes, same s***t different year as they say🙄 and yes an acceptance that this is how it is for us😞, I’m just relishing in the thought that I’ve no appointments for 3 weeks 😂 !
Hope all goes well with your ECG and you get your bloods sorted.
What’s the food supplement you’re taking?
I’ve started taking a spirulina supplement to add in more nutrients.
Thank you lovely for your great message. I'm sorry your still recovering from that nasty virus. Trouble is they do linger and make you feel so poorly. I'm sorry too that christmas time was tough for you all. I've had strong biliary pain again this week and really wish there was something else i could do while i wait!. 😪
Wishing us both a pain free new year as possible and i'll be in touch next week.
It's so nice to hear from you. I am sorry to hear that you've been unwell and struggling over the christmas period. Gentle hug.
There are so many germs aorund right now, coughs, colds, flu, covid and strep A is rife in local primary schools too. Even at 14 and 17, mine still pick germs up and bring it home. Everyone else in my husband's office had been ill too, in the lead up the Christmas, so inevitable that he was ill as soon as he stopped worked. Germs rife in unis too, according to my eldest.
I was anxious about them being in school until the 22nd December, as they had no time to rest before Christmas was upon us. So all in all we did enjoy Christmas, but it was a calmer one that usual. Hubby stayed at home and missed a couple of family things.
I had covid in September and the line was so strong, even after 10 days. I gave up testing then, as I know some that tested positive for weeks and weeks. But it's possible that my body is still recovering from this as well. Last year was definitely one thing after another. The covid jabs knocked me too - although when I had covid I was very, very grateful for them.
I have had an appointment with the Hywel Dda UHB menopause expert, at the start of December. She seemed nice and knowledgable too. She gave me a prescritpion for utogestan tablets, two at night on days 15-27 of your cycle and an oestrogel gel pump pack, daily application to the skin. However, after the appointment I lost the will to start it. I haven't cashed the script in. I haven't have a period for 6 months. She said they might come back and be heavy and painful. I felt frightened by that and felt that it was a step backwards to start have a monthly period....Plus as I ahven't had one for so long, how do I know when day 15-27 is?????? The main reason for initiating this was two episodes of extreme hot flushes and nearly fainting. But these haven't happened since September. She's booked me a follow up for 3 months, so I will discuss all with her again. I think anxiety is probably the main issue at the moment.......Do you have tablets with your gel??
However I shouldn't been so pessimistic. I am luckier than most and really in a relatively good place. Just frustrated by the fatigue and wanting more energy to start the new year!!!!!
I started taking Rheal Clean Greens at the start of November. It's said to be good for gut health. It's a powder, to make a drink of in the morning (I add it to juice or water and add a squirt of lemon juice) and contains greens and fruit including spirulina. I also ofen have yakult and activia yoghurts, as my bowel symptoms have previously stopped me getting my 5 a day, because of the aweful side effects of that. I am basically trying a number of things.
I hope your recovery continues and you are in a better place soon.
Bless you Wendy you’ve had a rotten time of it too, I’ve yet to catch Covid😬 I’ve been lucky so far, these things do seem to knock us for six don’t they, I do hope you can pick up from it all soon, I think we need some nice dry weather and a bit of sunshine, this wet miserable weather doesn’t help!
I can empathise with your anxiety too, life feels very insular at the moment, like you say we just want some energy to get on with things, anxiety can be quite disabling can’t it, I hate it?
I’m so glad you’ve been able to see a menopause expert, like you say it’s difficult if you’ve not had a period for six months, I can understand how you wouldn’t want to start having them again! I don’t have to take progesterone because I had a hysterectomy last year but when I first went on HRT 2.5 years ago my GP put me on the same as you and I started having heavy periods again and because I was post menopausal I had to have the bleeding investigated. Everything was fine as it was just the utrogestan causing it. He should’ve put me on utrogestan continuously to avoid the bleeding, which I did go on for a while but I didn’t get on with it orally so used it vaginally every other night. I guess you’d count it as though the first day you start HRT as day one maybe?
If you don’t have a period in the next six months will you be classed as post menopausal? Maybe she would let you try the continuous once you’ve reached that point.
I absolutely hate hot flushes 🥵.
As for the food supplement I’ve seen that advertised but I was worried it might make me bloated and windy with my bowel issue too I can’t eat loads of high fibre which is a problem now that I’ve been told I have pre diabetes, exercise and fibre is apparently the way to help prevent diabetes which is a real struggle for me, I’m roasting chicken and boiling the bones for broth and adding carrots, peas and sweet potatoes and whizz it up in the blender to get some nutrients, my gut can just about cope with that. I might give Rheal a go👍 the nutritionist told me that 2/3rds of the plate should be veg and not potatoes or rice… tricky for me.
Take care Wendy, I hope we can both find some energy very soon 🤞.
Sending lots of gentle hugs to you too 🥰💐💕
Oh yes also I’ve got arthritic changes in my left hip ( the bursitis hip) degeneration in L4&5 and bilateral Tarlov cysts on my spine… don’t you feel like our bodies are the gift that just keeps on giving?😫🤪🙄 xx
Happy New Year wendy, it is hard for us coping with illness as the years just feel the same!. Specially so when we're waiting for treatment like i am!. I do always have hope though that the new year is going to be better than the last!. Its hope really that carries us forward i guess?. Good luck for your ECG , hope it doesnt get changed as you've waited a long time for it. Gp surgeries aren't doing anything which is routine as they're swamped with flu,covid and respiratory viruses at the mo. Do make sure you get those bloods as they're important but get easily forgotten!.
You did well not catching anything from your husband and daughter. Its not easy is it living so closely to bugs?. Must have been lovely having all the kids home!.
I hope you all have a happy and healthier 2023. Xx🤞💕🤞🙏🤞💕🤞
Hi Wendy. Sorry Christmas was not perhaps as happy as you were expecting. I think you got some great advice from people regarding vitamins etc. and when to start them. I was very surprised and happy that my new neurologist took bloods for a whole panel of minerals and vitamins. All rather normal except for my folate which I do not absorb well and so am on a methyl Related folate/ you know this I’m sure as you are on methotrexate? Have you considered that methotrexate or another medication is interfering with your energy?
That it’s time to try something new? Depending on your B12 tests etc. Also, I need to give a great shout out to antidepressants lol! My neurologist subscribed venlafaxine 150 and mirtazipine at 15 mg ( taken at night). This is for my EM.
But wow it pulled me out of a perpetual cloudy day. Less pain too combined with my gabapentin. Never underestimate the power pain has on us and our attitude about life as we limp along. I’m grateful for the pharmaceuticals that are helping me to be me. And that’s what I hear from you. You want to be you. I think as you get these tests done you will be closer to knowing how you get to YOU again. xx MrsMarigold
In the lay couple months I moved my dining room out and put in a bar system one at my level and the other my granddaughter. We have a floor mat and do bar exercises that are great stretches. It’s crazy but I don’t care. I always wanted to be a ballerina so I wear ballet shoes as we stretch. My posture is better, my mood. I believe it’s because I’m being me. Just took 65 years!
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Happy New Year and moving forward!
Do have any medicines or supplements prevent flare ups?
Does anyone else with SLE have leaky heart valves?
Does anyone know of how to find out if there's a Lupus support group in my area?
First recognisable flare
