Chronic Fatigue Syndrome / ME

Hi all

I was diagnosed with pernicious anaemia approx 12 years. I started with injections every other day for two weeks and thereafter I have them every 12 weeks.

For months now, ive felt my energy levels going down, and can't clean the entire house in one go like I used to be able to......... Anyway to cut a long story short

For over a month now, I've been getting really tired, I went to see my GP who has tested for absolutely everything, she also contacted haematology and they asked for a few more tests to be done, all now clear and so I'm waiting for an appointment to the ME clinic as she's convinced that's what it is because of the other symptoms I've started having too

Does anyone else also have ME ? If so, how do you try to manage it, I've read up that they can put you on antidepressants, but I'm not keen as don't want to get addicted to pills

Sorry for the long story, but hope there's someone who also has this and can advise me, as I can't afford to just take to my bed, I have 2 children and a part time job, which I can't leave as can't afford to, and I know that with my husbands income there will be no chance of us receiving any benefits at all......... But that's a whole new soap box moment. Xx

13 Replies

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  • This makes me so cross - you were diagnosed with PA twelve years ago and now they're calling it ME !!!! It looks like you have not been adequately treated with injections, causing you now to have severe fatigue. If you have other symptoms, (listed in the link below) it's essential that you receive more frequent injections as there is a short window of opportunity before neurological symptoms become irreversible. I hope this extract from the BCSH guidelines will help persuade your GP to take your symptoms seriously:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    This is what Martyn Hooper talked about in the House of Lords in June of this year:

    "Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

    We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands..."

    b12deficiency.info/b12-writ... (templates for writing and an excellent film)

    cmim.org/pdf2014/funcion.ph...

    The above UK research document is supported by many research papers and is peer reviewed. It also tells your GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.....

    PS. My relative was misdiagnosed with ME/CFS for years and then dementia. It turned out to be severe B12 deficiency - don't be fobbed off GreenArmy - ME is a lazy diagnosis.

  • Excellent information from Polaris. I would like to add about the Thyroid too - another condition missed by the GP's as they are fixated on the blood test for the TSH. Thyroid Stimulating Hormone. This a Pituitary hormone so not a lot to do with the thyroid. It is only part of the story. So when the TSH is in range the GP will declare you normal - often NOT the case. Where you are in the range is important. You also need the FT4 and the FT3 tested. The Thyroid produces T4 which is a storage hormone - this in turn has to convert into the Active thyroid hormone T3. Every cell in your body needs T3 so when it is low things begin to go wrong. As PA is auto-immune I would also suggest you have the thyroid anti-bodies checked....Anti-TPO and Anti-Tg. Auto-immune conditions like to hunt in packs :-) I have Crohns and Hashimotos.

    The symptoms of an underactive thyroid can be similar to B12 deficiency and there are many thyroid sufferers on this forum as well as Thyroid UK. The conditions overlap in many cases.

    Of course you need more frequent B12 injections but I would also check out the thyroid. ME - well I would rule out everything else before accepting that diagnosis. How are your VitD levels ? Ferritin ? Folate ? Iron ? All need to be optimal for you to feel well. Rarely checked by GP's unless requested. Once you have your results - do ask for copies for your own records - a legal entitlement under the Data Protection Act. You can then post them in a new post and people will be able to offer more constructive advice.

    I was diagnosed with Fibro in 2000 and Hashimotos in 2005. Since treating my thyroid correctly and taking supplements including B12 injections weekly - my health has improved hugely and no signs of Fibro. Another condition that needs more in depth testing......

    Am not a medical person - have just learnt from others whilst travelling the bumpy road to wellness.... :-)

  • I totally agree with everything Polaris and Marz have told you. Mine began with under active thyroid, and I then went on to develop low B12 and fibromyalgia. I have persuaded my GP to trial me on six weekly injections instead of twelve weekly , and I think it is helping a lot with the awful fatigue and general achiness.

    Do you get numbness and pins and needles? These are symptoms that your B12 is still low, or not being absorbed properly. Incidentally, it was recently found on a blood test that my VitD is low too. Get your GP to look into more of these suggested routes before getting labelled with ME. Good luck with everything. MariLiz

  • Hi,

    My top tip would be to ring the PAS. You can leave a message and they will get back to you. They are sympathetic and a good source of info.

    pernicious-anaemia-society.org Head office: 01656 769 717

    There's seems to be a lot of people using this forum who have been diagnosed with ME/CFS or Fibro at some point.

    For many years I believed I had ME/CFS but am now convinced I have B12 deficiency or PA. From conversations I've had with other ME/CFS sufferers, getting labelled with ME/CFS can lead to doctors no longer looking for other possibilities. In my area and some others in the UK, ME/CFS is viewed as a psychosomatic/mental illness and is sometimes seen as the preserve of psychologists.

    I strongly agree with Polaris that ME/CFS is a lazy diagnosis. While I believe that there is a genuine illness called ME/CFS I think that a large proportion of people labellled with this have another illness. I believe the same about fibromyalgia. I have a diagnosis of fibromyalgia and agree that I have fibro symptoms but believe they are caused by long standing B12 deficiency.

    I have been ill for over a decade and think I have suffered permanent damage from non-treatment of B12 deficiency or PA.

    There are some interesting posts on Martyn Hooper's blog recently where he discussed Countess Mar's questions to the government about the misdiagnosis of PA as ME/CFS. Martyn Hooper is the chair of the PAS.

    martynhooper.com/

    "she's convinced that's what it is because of the other symptoms"

    PA and B12 deficiency can cause the same symptoms as ME/CFS. I'm interested as to why your doctor doesn't think your new symptoms are due to PA. Have you asked her?

    Have a look at these lists.

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    PA/B12 defic can affect virtually every body system.

    Useful books/Other links

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    b12d.org

    Could It Be B12 by Sally Pacholok

    Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    Polaris mentions the BNF, as well as loading injections until you stop improving for those with neuro symptoms, you should then receive an injection every two months.

    "thereafter I have them every 12 weeks."

    From your description of your treatment it appears that you are receiving the standard treatment for B12 deficiency without neuro symptoms not the treatment for B12 deficiency with neuro symptoms.

    Have you got any neuro symptoms? Is your GP aware of all your neuro symptoms if you have some? I wrote a list for my GP of all my neuro symptoms.

    I also gave my GP a copy of page 29 from the BCSH Cobalamin and Folate guidelines. This is a diagnosis flowchart and mentions treatment for those with and without neuro symptoms.

  • Whoops, thought of something else.

    "I can't afford to just take to my bed, I have 2 children and a part time job"

    I was in a very similar situation. Adequate treatment for PA or B12 deficiency is worth fighting for. For so many years I have not been able to be a proper mum. I so wish I'd known about B12 and PA when I first became ill.

    If your children are under five them this charity may be able to help.

    home-start.org.uk/

    If you're struggling at work, you may be able to ask for an occupational health assessment. Have a look at the Equality Act 2010.

    gov.uk/rights-disabled-pers...

  • I'm sure that you would feel better on more B12 injections Always make sure that you have good levels of folate (B9) preferably from green leafy vegetables--- B12 and folate work together. Vitamin D3 with K also helpful . The doc will probably not be prepared to give you extra B12, so you might consider self-injection.If so, come back here for help on that. All the very best to you.

  • I assumed for years that what I have is ME, exacerbated by a spinal injury, but now I have realised it probably is and always has been B12 deficiency (and perhaps thyroid problems, as I've had 'borderline' results, & family history). Previously I had no idea of the extent of symptoms and damage caused by B12 def.

    With the ME diagnosis I believe medics don't have to take much action on it, except perhaps anti depressants and possibly a referral for counselling and a graded exercise plan. As I understand it, ME should be a diagnosis of exclusion, & so I think we'd have to be tested for a huge number of conditions to really get a true diagnosis. Some research I believe shows there are changes to the brains of ME sufferers, with an MRI scan.

    Have you looked at Dr Myhill's site, she is an expert on ME / CFS? (google & it will come up). Even if you have ME she suggests B12 injections are helpful.

    To manage ME is extremely difficult, you do need to rest as much as possible, but also get fresh air and gentle exercise, examine diet (eg cut out sugar, alcohol, caffeine etc) and really become an expert in managing your energy which yes, is very difficult working and with a family to take care of.

  • Hi all, thank you so much for the responses

    Sorry due to lack of energy and foggy brain, I didn't really explain myself very well

    I'm still having my b12 injections every 12 weeks and since being diagnosed 12 years ago, I've not really had many other symptoms, apart from feeling a little tired a couple of days before injections were due.

    But for the passed couple of months I've felt so tired, aching feet all the time, and various other symptoms, my b12 levels are stable and where they should be, I've been tested for everything inc thyroid, I can't fault my GP on that at all.

    My GP has checked my B12 levels and ever since they boosted them up 12 years ago, there have been no problems, so she now suspects I also have ME alongside having pernicious anaemia.

    Sorry if my original text made people think I had been misdiagnosed.

    Im just wondering if anyone else with pernicious anaemia has also been diagnosed with ME

    Thank you x

  • Oh dear GreenArmy, three monthly injections are not sufficient and, as already mentioned, the research document tells your GP that, once b12 treatment is started, blood levels are not reflective of how effective the treatment is - symptoms and the condition of the patient are what matter. Foggy brain is a major neurological symptom and could progress to catastrophic nerve damage without enough B12.

    This is exactly what happened to my relative. The surgery misdiagnosed fatigue, weak legs, loss of smell, headaches and eventually foggy brain, as ME for years - if they had taken a full history and not only relied on tests, they would have realised that, having had food allergies and being vegetarian, B12 def. was the problem. After dental treatment with nitrous oxide, which inactivates B12 if already deficient, memory problems worsened, hallucinations and psychosis began and she was diagnosed with dementia after an MRI and treatment with drugs for Schitzophrenia ruled out Altzheimer's.

    We had to research and battle for the right diagnosis and treatment and she made a remarkable recovery, although still with some nerve damage due to delay in treatment. Luckily, an Indian doctor in the practice agreed to give her monthly injections. Very few GPs understand this disease - my sister's GP admitted that medicine is now mainly test based and she knew very little about B12 deficiency.

    PA/B12 deficiency has just been debated in the House of Lords:

    "To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed."

    Countess of Mar - Crossbench

    theyworkforyou.com/wrans/?i...

    It could be a good idea to take your husband to your next appointment and write with the information already given, to try for more frequent injections or supplement with self injections and, as my sister and I do, Jarrows Methylcobalamin 5000 mcg. sublingually (Good reviews on Amazon for neurological symptoms) - some experts believe in covering all bases - after all, you cannot overdose.

  • Yes to your question green army, although late reply, I was diagnosed with thorough testing by my excellent gp with PA 4 years back, then severe CFS/ME 3.5 years ago and recently underactive thyroid so now managable with B12 inhections, Thyroxin and CFS self managed as much as possible.

    All 3 were fully diagnosed using blood resulrs so no mistake. If you suffer with CFS/ME with the range of symptoms I experience then that cant be mistaken with the blood results that PA give and Hypothyroidism give.

    As long as you have a good gp then listen to them as you will google yourself witless haha.

    Stay well.

  • I also have a low white cell count, and have done for 12 years, but the last test showed it was just a fraction under what my level normally sits at. They've tested everything so think it's linked with ME ....... I'm awaiting my assessment appointment to come through for the ME clinic

  • Unfortuately B12D doesn't make you immune to other conditions so it is quite possible for there to be more than one thing going on.

    It may be worth looking at the format of B12 you are receiving though or trying some methyl cobalamin for a while as some studies show that people with ME (and MS) can respond quite well to high doses of B12. However if you are UK and NHS then you wont' be able to get methyl on NHS. Adenosyl might also be worth a try. The writeups seem to be quite happy that the results might have included some mis-diagnosis but that was unlikely to explain all of the success.

  • Unfortunately, ME is a common condition mistakenly tested for because, as you said, it fits alot of the symptoms. But its usually not, I was also tested for Parkinson's disease, Huntington's and others. Fatigue is also a symptom of pernicious anemia and b12d, theres no real cure for it but you can manage it with more injections.

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