Hello everyone! I hope your Christmas was a happy and healthy one, I know sadly it will not be the case for everyone, But! With a New Year ahead of us, everything is possible. And we deserve it. Big hugs to you all x OK! Just a couple of questions for you. I have been for the past 3 months been having pain in my lower back along with numbness in my pelvic area and down my legs. Only partial pain in my hip joints. I thought I must have injured myself lifting something. Now I am discovering that many others in our group experience this and it looks like it could be due to PA Is this possible? Also! I have been noticing that my ankles feet and fingers are stiffening in the morning and I am slow coming down the stairs and walking for a short time. it is only like I say, just for a few minutes but could it be the start of arthritis? Bending my finger to make a fist is sore and stiff. Then it comes right. I read arthritis can do this but strange it is just happening. Also! I have allodinia which has not improved though it has now been 10 months of treatment and 6 months have been twice daily injections. Is there any of you with these symptoms and did they resolve for any of you? Thank you xxx
Problems with stiff joints: Hello... - Pernicious Anaemi...
Problems with stiff joints
Yes, I had bad low back (to the tailbone) pain for many years. It started when I switched jobs 8 1/2 years ago and I thought it was my desk chair at work. Back then I was monthly injections then every 3 weeks. Fast forward to 2020 and I was off work for 8 mths and every 3 day injections and my back pain improved. But I never realized it was from b12. Started hurting again and since October 2023 I’ve been daily and now divide my 1ml does into two injections a day and realized that my back pain is gone. Even my joints seem to be more flexible and extra bonus is my eczema is gone! Now I realize it was all too little b12 for myself.
Hi Swift Ok! That is very interesting. I also have had a couple of diferent skin problems One I had for years and it completely cleared up after daily and twice daily b12. The other was like exma on my face that started before treatment and was itchy. Strangely it stopped itching after treatment but I now find I need to exfoliate my face more regularly as the skin seems to be thickening. No idea why!!
Who knew! I never would have guessed my eczema was from b12. The timing with my back pain made sense too cause I was in a new job in a new chair. I am still amazed everyday at the symptoms that are going away that I lived with for years on monthly injections.
I have a b12 deficiency and osteo arthritis and also suffer with stiff joints. My knee's, big toe joints and wrists are very painful which are worse at night. I have often woken in the night to spend a penny and not been able to put my feet to the ground because of excruciating pain and stiffness. I have a wardrobe full of shoes I am unable to wear. When diagnosed with more than one complaint it is hard to say what is causing what. I have found sleeping with my legs raise has helped ( not cured ) with the problem especially with the numbness in my feet. It might be worth a try, I have found raising my legs seems to have taken the pressure of my back ! I have juggled with various wedge pillows ect in the past but find a normal well filled pillow to raise my legs and a cushion between the knees helps.
Thanks Jillymo I am sorry to hear you suffer like that. It must be very difficult. I have also found I am living in flatter comfortable shoes and also have a ton of high shoes that I am not even trying to wear. I just don't feel I am up to it. I don't know if this is the beginning of arthritis My sister suffered with several types of it. I will ask my DR to check for it. Rheumatoid tests came back neg. I have had a lot of nerve damage in my leg due to b12 def and at one stage thay would burn at night and I found relief raising them with pillows also.
It has been proven you have some form of neuropathy going on what with your diagnosis of allodinia. Mine started with pins and needles ect but at present left with the burning stinging sensations at night. Maybe it is still early days of our healing or just something we have got to live with. My heels went in a charity bag decades ago. 👠 ☹
I were so poorly with it a couple of weeks ago I resorted to ice packs to try and reduce the inflammation - it helped. I find the change in weather can cause a flare up of symptoms.
I'm now reduced to spongy flipflops & my daughter informs me I walk like a 🐧bless her.
It is certainly a challenging and complex condition thats for sure. One thing improves and another rares its head. aaahhh!!
Hi brenanddave,
Sorry to read, Pernicious Anaemia is an autoimmune disease, inflammation can be present in ALL autoimmune diseases whether that is Lupus, Addison’s disease, Pernicious Anaemia, Inflammatory Bowel Disease.
The inflammation can be systemic meaning widespread. So, joints, skin, our mouths can blister. And as we age, we can also have 2 or more autoimmune diseases.
Joints are stiff in the morning because we have not been jumping around in bed. We have rested our body. So, for you, the stiffness improves and dissipates. It is the same for many people with P.A. and Autoimmune Diseases. We roll out of bed like arthritic people but within 20 minutes of warming the body up by movement, we are moving normally.
Happy New Year.
😘
Thank you Nawhai. That is very reassuring! Happy New Year to you too xx
I've had back issues severe enough for MRI investigations for 3/4 years, and recently my hips and even knees have been extremely painful. MRI and Xrays showed some nerve impingement and mild arthritic changes, but to me it didn't seem enough for such severe pain. After the 5th of my 6th B12 loading dose injections the pain had almost completely disappeared... As has been mentioned before, it's just unbelievable how many symptoms are linked to B12 deficiency. I'd been attributing all my weird leg twitches and stabbing pains to the spinal nerve issue! Unfortunately I had a treatment break over Christmas and now as the injection frequency has reduced to twice weekly the pain has returned, but I'm waiting for the miracle again! 🤞🤞🤞
Yes! I'm sure you will find it helping again. If you are unable to get on going relief maybe consider SI yourself. I am still trying to find what level of b12 is right for me. It changes with the changes in your daily life, if you are ill, working harder or even stressed. Good luck with your journey x
Thank you so much. Even so early in to this journey I'm thinking self treatment has to be the way... don't think the gp will want me rocking up twice a week for the medium or even short term! I "just" need him to agree to prescribe the B12 in sufficient quantity 🤞
Well! I went down that road and it almost sent me over the edge . It was so stressful trying to find a doctor that understood and ego did not make them inclined to gaslight or demean me. In the end I have found a wonderful doctor and though he can only prescribe EOD inj , He totally supports me importing them from Germany and SI twice daily as he allows me to follow my symptoms and treatment as I feel I need too. At this time, any less has proven to flare up symptoms. Wedgewood has given me great contacts for supplies and my local pharmacy showed me how to administer. You can go on line for a tutorial. Good luck! You do have options x
It's really reassuring to know that we CAN take back power over our own health. I will see how the gp reacts to awaited blood test results, but at least with the help of this brilliant forum I feel better prepared for whatever happens next.
And as you advised when we had this exchange a few weeks ago, I am now s/i every 2/3 days, amazingly with my GP's knowledge and approval, and B12 on prescription! It was reading posts like yours that made me determined to be as informed as possible and not be gaslighted (gaslit?) Thankfully even though I've had bad fatigue and brain fog, I've been well enough to put my case. My thoughts are with everyone who is too ill and exhausted to fight for themselves 🙏 It shouldn't be like this.
Awww!!! That is great news Myoldcat!! It is incredibly overwhelming isn't it? Crazy that you can feel so unwell and there not only seems to be very little known or understood about the condition by the med field but we have to deal with their ridicule and gas lighting as well . And!! at a time we are so utterly exhausted that all we can do is cry when they do it to us. Yay! that you have a supportive doctor. I'm so happy for you. It helps make you feel you can do this!!. I have recently found that taking centrum 50+ with my b12 inj really pushed me along with my neuropathic pain and exhaustion. I would recommend giving it a try. I was taking multi b's until I read about a top nutritionist at an American hospital discussing chronic fatigue and she recommended it. I decided to give it a go and try replacing the multi b as it had the bvits included along with many other vits and minerals. I figured that if I was missing any other nutrients I needed that maybe this will help. And it did! And almost immediately. We need to do our own research and find our own answers I reckon. x
Yes, it's tough enough to discover you have a condition - possibly with serious consequences - and need lifelong regular injections without having fight for them too! Thank goodness there are so many well informed people here that can support us with their research and knowledge. And that's helpful advice re the other vitamins, thank you x
Yes!!I don't know what I would have done without the support from this group. Everyone has been so great. You can take a little bit from each person's experience and use it to help navigate your own health. It's nice to feel we are not alone with this x
Need to vent....
Getting MORE nerve pain with loading shots. Why???
Exhausted With GP's
AUTOIMMUNE LIVER BLOODS
Problems with a sore and poisonous tasting mouth.
