I have injected for six months with variable frequency. I was getting better since last year September after probably megaloblastic RBC and all if it's symptoms and taking seven months taking B12 pills, U switched to injection and after almost one year now I found I had to take iron pills too. Then severe weakness , muscle pain and extreme fatigue started and I found my feritin was dropped but was in range. Before my megaloblastic experience I had severe pain in abdomen muscles pain because I used to walk alot during b12 deficiency period. It feels like completely tormented. Still after this long time I have severe pain. I have stopped injection because I want to raise my iron. Due to low iron I couldn't stand in my feet and after starting taking iron now I'm getting better but I feel so weak just a little bit pressure cause severe pain in whole of my but my stomach muscles pain intolerable. What can be the cause? I have appointments with rheumatologist, internist, physiotherapist. But My I lost hope, because my GP hospital no one they don't know what's wrong and how to help. Can it be just neuropathy or requires special tests for example fibromyalgia tests. I think I have to raise my feritin level fast and it was 34 last week and last month it was 23. Now I take 28 mg gentle and two times a day and it helped alot but I think I need to take more. Low iron has lots of bad symptoms and by taking iron those symptoms improved alot. Please help me I'm living in agonizing situation even pain killers don't work. Along with iron deficiency symptoms I have many B12 related symptoms but some if them improved. I can't inject because whenever I inject my symptoms execerbate. I'm in dilemma. Really I don't know what I have to do. Can I increase my iron pills to three times a day. Now I take B12 pills and stopped injection fir two weeks. I have severe weakness, numbness in hands and pain in my stomachs which doesn't go away.
Please help, severe abdomen muscles pain - Pernicious Anaemi...
Please help, severe abdomen muscles pain
Iron takes a while to increase. You are doing well. My symptoms
often got worse after a b12 injection.
You stomach pains need investigating
I think by start/ stopping b12 doesnt help. Try and stick to a regular
regime of injections
I personally wouldn't increase iron as the level is rising .
Thank you, but I couldn't get the last sentence" I personally woujdnt increase iron as time kevejs are rising ."You mean if I take more than one pill a day it's dangerous.
I meant what iron you are taking is working as the level is higher.So personally I would not take more but wait and test.
Iron can aggravate your stomach.
Also high amounts only on a doctors instruction with a follow up blood test.
But it healed my iron deficiency symptoms so fast and I think iron level is not the same in everyone. I used the think like that way but it's look like its not. Since I exercised during last month my dizziness bimpriv d alot but I think something happened in me and iron probably was in demand by muscles and that's why my muscles started to sore so bad, extreme fatigue and severe weakness. Cold sweating so heavily and I couldn't stand on my feet and after taking iron all of the almost resolved but I think I have to take more. On November I have appointment with internist and have a blood work let's see how much increase would be in my feritin. But still have feeling pressure in my abdomen and really don't know how to get rid of it. Still some of iron deft come and go but it's much better than before. I think people with muscle neuropathy need more iron as muscles getting back to normal after related get repaired by B12 and folate.
I think my exercise was wrong and I had to wait things to go on it's own. I mean gradual improvement based on a fixed frequency regime is the best way to get improved may take longer but it worth itIn the other hand my dizziness and eyesight improved to some extent but not muscles specially abdomen muscles
Hi,
I'm sorry to read that you are suffering severe abdominal pain.
Does your doctor know you are in severe pain and have they referred you to any specialist doctors to try to find out the cause of the pain?
Has your doctor ever ordered a full panel of iron tests?
Iron tests
labtestsonline.org.uk/tests...
"Now I take 28 mg gentle and two times a day and it helped a lot but I think I need to take more. "
Has your doctor recommended taking 28mg iron twice a day?
It seems a lot of iron to me.
NHS link about iron
nhs.uk/conditions/vitamins-...
I read some of your older posts but not all of them.
Am I right in saying you have not found out why you have B12 deficiency yet?
Were you ever tested for PA (Pernicious Anaemia)?
Testing for PA
pernicious-anaemia-society....
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Gastrin test
labtestsonline.org.uk/tests... am not medically trained.
Ever tested for coeliac disease?
In UK, it's recommended that patients with unexplained B12, folate or iron deficiency are tested for coeliac disease (spelt celiac in US).
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Were you ever checked for internal parasites eg fish tapeworm?
One potential sign of infection with internal parasites is an increase in eosinophils, a type of white blood cell. Eosinophil result is on Full Blood Count ( also known as Complete Blood Count).
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
I am not medically trained.
I have done lits of test for any infection and parasites. Everything was normal. I was diagnosed with B12 deficiency in 2014 but doctor didn't say for how long I need injection band other doctors didn't follow his diagnosis and didn't give my monthly jab. Since I didn't have any symptoms then just moved on, but through time symptoms started to show up untill last year September I experienced megaloblastic RBC, since we don't have guideline in place I live in hospital and no doctors could figure out what's wrong and by trial and error I found I have B12 deficiency. Fir Iron also by trial and error I found that otherwise everything was in range in blood work. For abdomen muscles I think due to long time deficiency nerves are entraped in muscle and requires lidocaine injection to pacify severe pain. Today I'm going to ask GP for iron infusion.. but I think for people with severe muscle neuropathy its required to take iron pills. I asked GP assistant fir taking iron pill she told me for three months one pill a day it doesn't affect inversely but I need blood work after that. But my symptoms was so bad and found that I need to take more iron because it helped me right away. That's why I took two pills a day.
Hi! I am sorry to read what you are going through, but i really don't think that you should change your treatment according to your intuition. There are many reports here telling that b12 jabs made People worse before they felt any better. Since you don't stick to a treatment regime you will always feel like your first time and this first feeling will never go away.If you can relate your symptoms to Iron deficiency, you should have Iron infusions. It increases the Iron stores very quickly, relieving symptoms, but, as you have absorption issues, you should also consider a maintenance dosage. Otherwise the cycle will restart all over again in few months.
You should also consider other deficiencies such as folic acid and vitamin D.
If you are in such pain that painkillers don't even work for you, you should go immediately to a hospital. It's not normal to be indefinitely in pain and if you are home alone it can be very very dangerous.
I also don't see a gastrologist on your appointments. Everything you reported is related to the digestive tract. You're supposing that you have muscular stomach pain, but how can you be sure about the origin? Abdominal pain is a very wide symptom. Maybe an endoscopy can shed some light on your case. ((HUGS))
All if my blood work is in range. Unfortunately in hospital they can't figure out what's wrong. I have seen gastroenterologist couple of months ago I did ct scan of abdomen and before that I did sonography, all of them were normal. I think during b12 deficiency my physical activity was alot and due to that I have severe muscle neuropathy. My guess is maybe nerve abdomen muscle entrapment happened which requires lidocaine injection by finding exact location of nerves through sonography which just gastroenterologist can do so. My other symptoms was related to iron deficiency, ultra extreme fatigue, severe muscle pain, severe muscle weakness which I couldn't stand on my feet. After starting taking iron I feel much better but it's like attack, last night I went hospital fir iron infusion but triage said it's not emergency and you should talk to your GP but they admitted me unfortunately I supposed may don't treat me well again like five days ago and I returned back home without visiting ER. My GP referred me to rheumatologist he thinks it's probably rheumatoid arthritis, but it's not because doesn't affect my joints. My feritin level surges first it was 23 then 3 weeks later after I couldn't move jumped to 34 and then I started to take iron and feel much better. So unbelievably bad symptoms. I think fir people with severe muscle neuropathy iron taking should get included in guideline. I take methyl folate, it's wasn't regularly but now I take it in b complex every day. I take vitamin D3 k2 omega 3. Since I stopped injection I take B12 sublingual and timed release. But this abdomen muscle pain does not go away. I have double vision, blurry vision but improved. My dizziness also improved. In hospital I was told may I have fibromyalgia too.
Have you been tested for celiac disease? I have just been diagnosed with very low iron and also had a celiac test done, which came back as high antibodies
Not yet I'm gonna ask internist for that. Thank you for your help. But iron is in range two weeks ago it was 34 and 49 days ago it was 23 but my symptoms improved by taking iron pills in the last give days
If everything in your full blood count was well within range I would think taking more iron than your GP has prescribed is not going to help with your stomach problems. Taking too much iron is likely to cause digestive problems and give you more pain.
Do you have a diet containing iron rich foods? Have you had a colonoscopy or/and endoscopy to check if anything is wrong?
Are you overdoing abdominal al exercises without giving your muscles a chance to heal if they’re strained? It could be any number of problems not related to iron. I’ve had severe iron anaemia but not had stomach muscle issues related to iron anaemia. I have had all over loss of muscle caused by my very severe b12 deficiency though so it’s possible your problem may be low b12 related. If so you need to continue frequent b12 injections. Keep in mind that too much iron is harmful but you can’t overdose with b12 so I wouldn’t stop your b12 injections.
All of blood work is in range. My GP has not prescribed iron but cardiologist told me your iron is low which was measured 50 days ago which was 23 and then in my GP office measured it was 34 almost 20 days ago and my worst symptoms was started almost two months ago and was getting worse. Then I started to take iron and as soon as I started to take most of my sever muscle pain gone and even my extreme fatigue a little improved. Then I doubled it and make much better and my muscles for couple of hours get back to normal. Without iron pill I feel I'm getting crushed and melting down My guess is my muscles after injection trying to get back to normal since their related nerves are repaired and functional, but still lots of damaged nerve I have which requires to get repaired by 12 and folate. I think during injection for people with extensive muscle neuropathy requires to take iron. My exercise helped me to improve dizziness which I think is related to blood vessel loosening in feet due to their related nerve damage and exercise prioritize those nerves get repaired first since external stimulants make constrict blood vessel muscles. And exercise also forced skeletal muscles related nerves get repaired too so muscles need myoglobin and iron to be functional again and since iron is in demand and almost is in scarce in body causes fetching bit from other sources and new symptoms showering up which exactly happened to me. Now not only I eat lots of meat I'm trying after each walk to drink a little bit whey protein shake - just highly diluted a cu of it which help to enhance muscle myoglobin band I think it makes difference. As soon as I started to take iron my pain almost improved and my extreme fatigue turned to mild for some hours and I think I need more iron. My GP assistant told me I can take one pill a day for three months and then needed blood work. But for couple of days I take two pills and it perfectly working and think I need more than two a day. Fortunately gentle iron doesn't upset my stomach band even doesn't cause constipation just make stool dark and a little bit more hydration is required. Without iron I couldn't even stand on my feet. It's like miracle
Did you mean your ferritin levels had started to increase before you started taking iron supplements? I may be wrong but I think you probably don’t need to take so many, iron tablets don’t work immediately, it takes time to start to feel better after starting them. I would follow the doctors advice, it could be the other supplements you’ve been taking including the b12 that have helped or that you’re just starting to feel better. Doctors generally understand iron anaemia much better than pernicious anaemia and their advice on iron is usually good.
Yes my feritin increased on it's own but I couldn't move for a months. And as soon as I take iron pills it works right away and stops my symptoms I don't know why? But I think muscles demanding more iron as soon as their related nerves get functional. I even ask d doctor he didn't know why? I know it should take couple if days to work but it works for me right away in about 30 minutes and then muscles start to get strengthen. I'm also wondering why it's happening band it has freaked me out.
I think you need to do some research on iron and how taking too much can be really dangerous. I can’t see any way that taking a couple of iron tablets is going to instantly improve your symptoms. I’m saying what I think as I’m concerned that your symptoms might be caused by something else. The doctors need to keep trying to find out what is causing your symptoms so that you can get the correct treatment to enable you to get better health.
Exactly I'm so concerned too and have an appointment with internist but I went to see my GP he wasn't there and other GP told me I can take two tablets for two months but I think I need three because it helped me right away and I don't have how come it's possible and that's why I'm freaked out and going to see my GP tomorrow but I have referral for rheumatologist too. I have B12 deficiency symptoms and this iron symptoms worsen it more than hundred times. Now my stomach muscle like it's tormented when I don't take iron pill I feel like crushing and melting down and I can't even stand in my feet and my muscles sore like 9 to 10 out of ten. Then I feel extreme fatigue severe weakness in muscles and heavily numbers in my hands like I feel dying. And this iron pills works right away and I have no pain in just five day two times taking pills and I think I need three pulls day for a months and then reduce it to one I have no other choice without that I feel dying. I think injection helped muscles nerves recovered and as soon as it recovered muscles need their materials back myoglobin and iron. I don't know why it works so fast but tomorrow I'm going to ask GP to investigate it because I'm freaked out too. For 15 days I have stopped injection m I didn't have fixed regime of injection but sometimes I injected every other day. For about six months and seven months I was on B12 pills. I was started from megaloblastic RBC symptoms but since I was injected B12 no hospital and no my doctor found the reason why I had that symptoms band by taking B12 megaloblastic RBC symptoms stopped but new symptoms started like fatigue muscle weakness but when I was taking pills I didn't have these problems. Just mild tiredness and sleeping alot but as soon as I started injection frequently I felt my symptoms bare changing then I started to exercise mildly and my dizziness and a little bit eyesight improved. But my abdomen muscles had pain right before megaloblastic RBC since I was walking alot I think nerves of muscles in there was impaired completely and now still is in there. I have no idea what's wrong but I'm slowly dying. Too much pain I have even pain killers don't work. I hope somebody find out what's happening and give me proper medication. But all of my blood works are normal and this freak me out more. I need strong pain killers at least I get improved a little bit more. And I didn't know how these Iron pills that much fast. Now I take B12 pills which is not the same like injection but I need to buildup my iron first fir a month and if there is no other iron related symptoms then I get back to injection. Up to now iron pills worked for me and reducing those intolerable symptoms so fast. Maybe there is other mechanism. And even UK pernicious anaemia guidelines are not accepted in other countries yet except the Nederland. I gave no idea why but there are some differences and I know iron is toxic but cieling is 330 or something and even by taking four otc iron pills it takes more than couple of years to get that much toxicity. Mine was 34 last time and I have no idea why it was jumped from 23 to 34 but may be it was down after second measurement too since I couldn't move for a month after first measurement.
B12 help
Weak and Skin Burning
Help please - B12 deficiency?
