I was diagnosed with PA last month after being ill for what I would say forever.... doc says 6 years.... reason I am here is to understand it a bit better.
I am suffering daily with pain, nerve pains and well just pain in all my joints. On the list of symptoms it has neuropathic pain and fibromyalgia. A friend 4 years ago with it thought I had Fibromyalgia. I have a doctor appointment to chat about it but worried they will think I’m overthinking it and it’s just PA.
Do any of you have Fibromyalgia and PA? The symptoms are rather similar.
Any help is greatly received.
Xxx
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Christina1988
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A lot of people with a B12 deficiency are diagnosed with fibromyalgia, and some people with fibro/ME/CFS seem to respond well to B12, suggesting they were misdiagnosed. journals.plos.org/plosone/a...
Are you on any medication for the pain? I couldn't live without my gabapentin.
I have just had my 6 x loading doses of b12. I never take medications but am finding I need to take pain relief, without much relief more frequently. Thank you for replying. C
The pain associated with peripheral neuropathy doesn't respond well, if at all, to traditional OTC pain killers (ibuprofen, aspirin, paracetamol, etc.)
A family member was diagnosed fibromyalgia many years ago with the symptoms you describe . They tested for lupus, Addissons ect ect. Then developed POTS. On a hospital admissions severe b12 defiency was found with megakoblastic aneamia and very low folate and vitamin D.
As it was the first ever b12 test. We think it has been going on for years Undiagnosed. Improvements have been made now
'Just PA' is an understatement. It has many many symptoms which overlap with other conditions. Often people get misdiagnosed.
On posts here you will find the list of symptoms. Alot of people have more than one condition going on
I hope you improve when your b12 injections start.
This is a great forum with many knowledgable people who have PA or b12 defiency I. Sure you will find it very useful.
Sorry to hear it's been going on for years for you.
My best wishes for your doctors appointment and treatment plan.
Hi, I was diagnosed with fibromyalgia in 2010, and with PA about 3 years ago.
I had kept pushing for my b12 levels to be retested as I was always very low 'normal' so they left me to it, but then I fell ill with a gastric bug and the GP included it on those bloods and for the first time it was in the treatable range so I'm now on 12 weekly injections although I want to go to 10 weeks if I can persuade the GP (!)
I do get some relief from the injections although not complete relief. I've read on many fibro group posts about many sufferers having both diagnosis (or the PA and ME/CFS) although it's not clear whether they do actually have both conditions or if one was a misdiagnosis. In my own case, having just being diagnosed with Empty Sella Syndrome (no pituitary gland) I think my fibro symptoms are/were a combination of PA and thyroid issues, but that is another story altogether....
Fibromyalgia is garbage diagnosis and you are lucky to have your PA diagnosis. Focus on any diagnosis with lab findings. Then look to experienced patients to optimize your treatment.
Hi Christina1988. I was recently diagnosed with PA and started once a month injections in March of this year. Eight years prior to this diagnosis I was dealing with a number of neurological issues. Sacroiliac joint dysfunction, piriformis syndrome, Morton’s neuromas, ankylosing spondilitis, depression, anxiety disorder, blah blah blah. The list goes on and on. I spent most of my time either sleeping or crying. My feet cramped so badly that I couldn’t walk or stand for more than a minute or two. I had constant nerve pain and the doctors filled me full of antidepressants, anti inflammatory drugs, weird nerve drugs, cortisone injections, etc. I was a sad painful mess. Everything hurt all the time. After a rough start at the beginning of b12 treatment with every symptom getting worse for a while. I did my homework and read everything I could get my hands on about PA. Love Martyn Hooper and Sally Pacholok. They are Saints! I convinced my doctor to put me on a once a week injection schedule. She thought I was crazy and mumbled something about a “placebo effect” but she agreed to it just to shut me up, I think. Anyhoo, now after three full months of once a week injections I am starting to feel the nerve and instability issues improve! I honestly can’t believe it! After years of agony I went for a long walk yesterday with only minimal pain for the first time in eight years. Fibromyalgia is real. Don’t let anyone convince you otherwise. Your pain is real. But I think the B12 injections will help you. Everyone reacts differently and it won’t happen overnight but I think you will eventually see some improvement. I wish you all the best. Love from California.
My goodness you’ve been through so much! I’m so glad to hear you’re improving, and long may it continue!! Thank you for your reply, I am going to keep the appointment. I for sure need to do my research!
Strange how my fibro symptoms went when I finally got B12 treatment. I suspect many of those with a fibro diagnosis have undiagnosed PA or B12 deficiency from other causes.
I feel that sometimes giving a label of fibromyalgia means a diagnostic box has been ticked, investigation into the causes of fibro type symptoms stops and some GPs feel that their job has been done.
I feel doctors should be thinking more about what has caused the symptoms and excluded all possibilities before a fibro diagnosis is given, In my case I think a fibro diagnosis was given to try to shut me up ...I was very persistent at asking for tests etc.
In some parts of the UK, my impression is that fibro is sometimes seen as a mental health condition with psychosomatic symptoms. I hope you are in a part of the UK that is more enlightened. Similar situation exists with a diagnosis of ME/CFS.
Have you ever had a diagnosis of ME/CFS? Many of us on here have had diagnoses of ME/CFS/Fibro.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Point 1 is about under treatment of B12 deficiency with neurological symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
Lots of useful B12 info on above website, worth a thorough read. I feel queries about treatment/diagnosis are more effective when written in a letter to GP. In UK, letters to GPs are supposed to bE filed with medical notes.
Best advice I ever got was to always get copies of results. I learnt to do this after being told everything was normal/no action and then finding abnormal and borderline results on the copies.
Most UK GP surgeries have online access for patients to a summary of results/records. Details will be on your GP surgery website. Look for Patients Access/Emis Access/Online Access.
Vital to get adequate treatment or there is a risk of further deterioration including possibility of permanent neurological problems.
Do you have any neuro symptoms eg tingling, pins and needles, numbness, limb weakness, muscle twitches, migraine, word finding problems, vertigo, balance problems, tinnitus, restless legs syndrome RLS , insect crawling sensations (formication), problems with proprioception (awareness of body in space), clumsiness, bumping into things, dropping things etc .....?
If yes, is your GP aware that in UK, patients with B12 deficiency with neuro symptoms are supposed to have more intensive treatment?
See BNF link up page for details of UK B12 treatment for those with and without neuro symptoms
"I have just had my 6 x loading doses of b12"
I suspect you have been put on treatment pattern for those without neuro symptoms...
6 B12 loading jabs over 2 weeks then a jab every 2 or 3 months
For those with neuro symptoms it is...
A B12 loading jab every other day for as long as symptoms continue to get better ( could go on for weeks or even months) then a jab every 2 months
How often will you be getting jabs after loading doses finished?
Both treatment patterns allow for maintenance jabs to be given every 2 months... your GP may not know this.
GPs can find this info in their BNF book Chapter 9 Section1 .2
Some doctors consider fibromyalgia to be a neurological disorder.
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
If you have neuro symptoms, have you been referred to
1) a neurologist?
2) A haematologist?
See NICE CKS link up page which indicates that GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP does not want to refer you (this costs money) then have they at least written to haematologist at local hospital?
Don't count on any specialists you see knowing more about PA/B12 deficiency than any of your GPs although I obviously hope you are lucky with any you see.
I saw multiple neurologists and only one raised the possibility of B12 deficiency.
3) If you have gut symptoms, have you been referred to a gastro enterologist?
In cash strapped times, GPs can be reluctant to refer patients. I used to put referral requests into a brief, polite letter along with evidence that supported request eg symptoms list, test results, family and personal medical history and extracts from UK documents/guidelines.
Having PA, an auto immune condition, increases the chances of developing other auto immune conditions.
Have they done Coeliac tests and if they did
1) did they do both recommended tests tTG IgA and Total IgA?
GPs sometimes forget to order the Total IgA test. tTG IgA test looks for antibodies to gluten and Total IgA test checks who has IgA deficiency. Patients with IgA deficiency will need alternative tests for Coeliac at their bodies cannot produce the antibodies that tTG IgA test checks for. See Coeliac links in my other page.
2) before having Coeliac tests, did your GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken? One reason for a negative result in tTG IgA test is that patient was not eating enough gluten before test and therefore not enough antibodies were circulating in blood to register a positive result.
3) Have you had any thyroid tests?
It's quite common on this forum for people to have both PA/B12 deficiency and thyroid problems. In UK, GPs often only test TSH which won't give a full picture of thyroid function; there are sevarl other thyroid tests a GP can do.
I suggest putting any thyroid results you have on Thyroid UK forum on HU. It's a very active, supportive forum.
4) Has your GP excluded other auto immune conditions that have symptoms that overlap with PA especially ones where there is family history of it eg diabetes, lupus, Hughes Syndrome (also known as APS Antiphospholipid syndrome)etc?
22 years ago i was diagnosed with severely low b12 so low they did no other tests as they just wanted to get b12 into me. after initial loading doses i've been on 12 weekly b12 injections apart from a 6 month period when i was on night shifts and the doc allowed me to go 8 weekly. I've never ever felt well suffering from depression, joint pains, fatigue in all these years. I know at one point about 15 or more years ago the doc mentioned i had ME/CFS. No tests just because i wasn't improving. About 5 years ago i was absolutely floored with stomach pains etc and saw a doc who said you have fibromyalgia you just need to rest! - Aparetly it was on my medical records that along with ME/CFS they'd diagnosed me with Fibromyalgia but not told me! I was recommended bed and box sets for a week. I lasted 8 hours and got on with things!. Since april this year i've started self injecting and i'll say a large chunk of my symptoms are gone but i'm no where near "well". I think i left it too long to take control of my life away from the docs recommendations. do what you can to research and take control early. I'd looked into self injecting about 18 years ago but was talked out of it by family and its my biggest regret.
i have to self inject as without my life is limited far too much, fatgue takes over. At the moment i'm every other day or two. I still need my afternoon naps unfortunately with a hectic and stressful family life i don't always get it. Since upping my activitly levels to get fit i noticed the impact my low b12 had on my body - was up to four or five pages of notes of symptoms. i now train at a gym 4 - 5 days a week, basically i was in pain sat on the sofa for years, now i'm in pain for having done something. I've found a trainer who understands my limitations and although i've not done the 12 week transformation, i'm a year in and feel better and stronger. Before the self injecting i was literally struggling to breath to do cardio 6 weeks in. thats improved as has the feeling of strength draining from my legs as i tried to run longer than 1k. Now i appreciate this isn't essential for everyone but for my own self esteem being able to control my body to do what is as far as i see it basically active is a result. i'm hoping over the next year to go to weekly injections but i'll play it by how i'm actually feeling.
i'm the sole earner so stress really doesnt' help but hte extra b12 i'm self injecting is helping more than anti depressants and i feel there is definitely light at the end of the tunnel.
Self -injecting has enabled me to get my life back . I was only allowed one injection every 3months , and my symptoms returned after 10 days . I now inject weekly. The cost is very low (about £1.20 , everything included ) It’s great knowing that one cannot overdose . I can only recommend it .
I had to resort to self treatment as I was unable to get NHS treatment for many years. I count myself lucky to have avoided SACD, sub acute combined degeneration of the spinal cord and dementia as I was, in my opinion ,definitely heading that way.
I ,like many on this forum, need far more B12 than NHS treatment patterns allow. I suspect in my case that this may be partly due to being untreated for so many years despite my repeated requests for further trials of B12 jabs ( I only got one set of loading doses then nothing). I appear to have some symptoms including some neuro symptoms that are permanent. My symptoms return within a few days of a B12 jab.
I will add that I feel self treatment is an absolute last resort when all options for NHS treatment have been exhausted; I spent several years trying to get NHS to treat me, all to no avail at the time.
Symptoms Diary
Some on forum keep a symptoms diary where they track changes in symptoms over time with treatment. A symptoms diary can provide useful evidence for GP eg when arguing for jabs more often.
Are we all saying then that the b12 Jabs should be an instant relief? I feel absolutely no better, actually worse. I am due my first single dose after my loading ones at the end of November 😢 xxx
No . B12 injections will probably not be an instant relief . We are all different , and need different amounts
I know people who are fine on 3 monthly , and I know someone who needs daily injections to be symptom - free . We have to find out for ourselves , as the NHS has fixed ideas . They think that one size fits all when it comes to B12 injections , unfortunately.
I am 45, was diagnosed with PA aged 26, have an understanding doctor and have my B12 injections every 4-6 weeks here in the UK. I was diagnosed with Endometriosis aged 37. Been with my doctor 11 years now, they have told me I definitely have CFS and Fibromyalgia also. Went to a CFS doctor around 4 years ago but not much help. So many autoimmune illnesses overlap. Stress is an issue too, I have had anxiety and depression. I really need my sleep but get by on 4-5 hours a night due to muscle fatigue and restless legs. Fatigue has been with me my whole adult life, I work full time and sleep around that. It is hard but somehow I cope. I understand how you all feel, it is so frustrating. Legally here in the UK B12 is available now every 8 weeks. Argus for that. The PAS is fantastic, I have been a member many years, Martyn Hooper who started the PAS is a sufferer also, he is a great advocate for the illness and is constantly fighting our cause. Fibromyalgia is rather new to me, ibuprofen does not work, I have long hot baths several times a week, rest when I can, take vitamins, turmeric, magnesium etc, I put chia seeds in smoothies to help energy, I have tried all sorts over the years. I struggle around 2am with pain, restless, frustrating wanting to sleep. My doctor put me on sertraline 2 weeks ago to help the low mood, anxiety and Fibromyalgia, I am waiting for that to kick in. Thank you for the links above, I have read some of them before but will continue checking them out. I hope you get the help you need, remember you are not alone.
hi crikey you just exactly outlined my own situation flare up from June to September this year the heat has been a living hell hope you doin a lot better
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