I'm considering that I may have ME/CF... - Pernicious Anaemi...

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I'm considering that I may have ME/CFS in addition to PA

cdragin
cdragin

Short question: Do you feel a distinct difference before and after your B12 injection?

Long story:

I may have hit the trifecta when it comes to fatigue-causing illnesses. I went through treatment for breast cancer through the end of 2011; immediately following chemo, I got pneumonia. Once that cleared up I was thrilled to start serious exercise again and get back to work. Started working, running, hiking…SLAM!!! On the sofa for 4 days.

A few months later a blood test showed low B12; subsequent testing confirmed PA. Started on weekly loading doses, then monthly (I’m in the US). But there was little or no improvement in my fatigue for at least another year or two.

BC patients who went through chemo can have fatigue 5-10 years post treatment, so that was my first thought. I certainly had chemo brain for a year or two afterwards. The #1 recommendation for persistent cancer-related fatigue is exercise: which can worsen fatigue from either PA or ME/CFS. And I certainly found that exercise was likely to backfire.

Once I found this website, I realized that perhaps the B12 shots were too infrequent. Started self-injecting, first every 3 weeks, then every two when that did not seem to keep symptoms fully at bay.

This spring, I thought that every two weeks was the magic number for me, because I was making it all the way through the day without having to rest, and was increasing my levels of exercise — even running again, in my own pathetic fashion! I got up to 18 slow-paced minutes on the treadmill a couple of weeks ago.

You guessed it…SLAM!!! Back on the sofa.

So I had about 3 shots in a week, and now I’m on one per week. But although I feel better than I did those first couple of days of this relapse, I’m still struggling to get through the day.

I had never even considered a diagnosis of ME/CFS because I didn’t have 4 out of 7 symptoms…all I had was fatigue, exhaustion after exertion, and some sleep difficulties…lucky enough I have no pain, no swollen glands. But I just discovered they have changed the diagnostic criteria, and now it fits. And ME/CFS often occurs right after a viral infection, like my pneumonia.

Maybe I am just being begrudging about more shots. But honestly, I don’t always feel a big boost of energy when I get one. I’m not sure whether to increase my shots to daily until I feel better, or even do the opposite…hold off on the shots a bit, continue to rest, and see if this relapse improves, or gets worse, just to see if they are actually making a difference. It’s entirely possible that I would do just fine on a monthly shot, and that other factors are causing the fatigue. I should mention that I don’t have any severe neurological symptoms…never any pins/needles/numbness, although I get some restless legs, foot cramps, and burning feet.

My husband doesn’t believe the extra shots have done me any good…but he’s also not here during the day so he doesn’t know whether I’ve spent the day active or comatose.

I guess what I’m wondering is…do you all feel a distinct difference right after your injection, that then fades gradually? Is it really obvious to you that they are making a difference? Or can you have a bad day soon after an injection, and a good day after it’s been a while? Do you cycle through highs and lows regardless of your injection schedule? The unpredictability of this has been maddening.

19 Replies
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Regarding B12 I would suggest keeping an activity and symptom diary and planning experiments with the frequency of interventions and with all variables controlled. So don’t keep upping the exercise and daily activities until you are sure of your baseline symptoms, dose and frequency. Only change one thing at a time and wait to be sure of the result. I presume you don’t have peripheral neuropathy symptoms?

With regard to ME or CFS USA is going backward re the diagnostic critieria. IOM latest and CDC document, that starts so well, is of no use as it still recommends exercise for a group that are exercise intolerrant such that it is contraindicated. Do you meet the Canadian Consensus Critieria or International Consensus Critieria? Those are the best for determining ME. Personally if you meet broader definitions of Fukuda CFS or others that omit PEM I would consider it as unrelenting fatigue of unknown origin and continue to rest and look for answers.

Unfortunately CPETS are the best way to determine your capacity to exercise; see the Workwell Foundarion for more information on this in the ME patient group. For those of us with very mild symptoms, and PEM that we understand, two CPETS are needed 24 hours apart. With just one test we can look relatively normal but the second test captures PEM and our severe exercise intolerance. I understand these are fairly readily available in USA and cost around $1200 out of pocket. The tests are not without risks but would give you some answers. Otherwise look at the work of Dr Systrom using invasive CPETS in his research.

cdragin
cdragin
in reply to cwill

Wow, this is all great information, although I may need to google a few acronyms! I will check out those alternate criteria. Considering the current state of the CDC and other US federal agencies, it is not surprising that they are not up to snuff.

I have kept activity/symptoms diaries in the past, and even charted them, and they told me absolutely nothing! That's part of my frustration. But I've started them up again. I also plan to keep to a very even, unambitious exercise schedule. Besides helping to reduce possibly backlashes, I have found that a steady routine in general is very helpful to me physically and mentally.

I don't think I have peripheral neuropathy, at least not severely, but I do have a few odd symptoms other than the classic pins and needles. Sometimes I get a burning sensation on the soles of my feet. During the winter, I will get Raynaud's in my fingers and sometimes some numbness in my toes and the balls of my feet. I get "twitchy", RLS-type symptoms sometimes at bedtime, and foot cramps, both of those enough to keep me awake no matter how tired I am. And lately I've noticed that when I hold my phone for a long time (which I do a lot when fatigued, lying around playing games or reading on the phone), that hand will start to fall asleep. Of course if I were experimenting with spacing out my shots and I started getting more of these symptoms, or other neurological symptoms, that would be important information and I would certainly inject sooner rather than later.

Do you have ME/CFS yourself? You seem to know quite a lot about it.

cwill
cwill
in reply to cdragin

Yes I was ‘diagnosed’ CFS at which point they stopped using their medic brains. I actually had hashis and B12 deficiency with peripheral neuropathy, pretty clear cut labs and symptoms. I have self educated and self tested/treated as life is now too short to wait for the NHS any longer. In your reading MEpedia is a good place to start for standard links and definitions. It’s a work in progress by us all. But don’t trust wiki as no matter how many corrections and up to date research we post it always reverts to rubbish.

I hope that you get a clearer picture or find someone to understand your symptoms. Consistent exercise sounds a good start as we normally need a very clear baseline before we change anything.

Good luck!

cdragin
cdragin
in reply to cwill

So I looked up the Canadian and International criteria as well as Fukuda. I definitely do not meet either the CCC or Fukuda criteria, again with lack of pain being the deciding factor. I *may* meet the ICC, but weakly. I think you are right in not continuing down this path. There is no treatment anyway, although many of the recommendations on pacing, graded exercise, etc., I think provide useful guidelines regardless of the underlying cause.

Interesting about CPETS. My 2nd year out from chemo/pneumonia/PA/onset of fatigue, I tried to join a clinical trial at Duke University which was focusing on exercise for breast cancer survivors. I was desperate to get into this study, because I was clearly having fatigue, being told that I should treat it with exercise, and exercise was making things worse. I went through a day of testing - blood, urine, body fat, etc., and the last was a treadmill test. Afterwards they told me they had good and bad news. The good news was that I was above average in fitness. The bad news is that I was so fit I was ineligible for the study. They only wanted “couch potatoes” and even with my issues I was far from a couch potato. This has made me suspicious of studies that say that exercise is an improvement…if the studies are only done on people that are deconditioned, then the conclusion should be that exercise is helpful for deconditioned people, not that more exercise is helpful for everyone.

cwill
cwill
in reply to cdragin

I’m glad you have some clarity re ME CFS. It can be a dustbin diagnosis and yes no care but inept altered CBT persuading you there is nothing wrong and exercise in ever increasing amounts, whilst ignoring your bodily. Unfortunately a lot of the research for this approach was done with a wide open criteria and mainly, we believe, involving deconditioning. Your experience of the trial is interesting. So fight any docotor that tells you CFS SEID deconditioning medically unexplained symptoms etc. As I said above a decent period of rest and a set level of exercise or physical activity each day is probably sensible. One doctor I know for fatiguing illness looks at everything in great detail to make sure all are optimum, rather than just in range, and then prescribes rest, total rest, until your body screams at you to do something else. I hope you find what works for you.

Initially, my fatigue and lethargy was helped with self injecting but as the months went on, my shortness of breath and lethargy was worse again. I now know my main symptoms of low b12 is balance problems and swimming head. These are controlled by the b12 but I then had to investigate why I still have the SOB, lethargy and fatigue. Transpires that it wasn't just the low b12 but Hashimoto's/autoimmune thyroiditis that was contributing to these symptoms. Have started treatment with levothyroxine but still have a long way to go.

Do you know your folate, iron, ferritin and vitamin D level to support the b12? These need to be optimum.

cdragin
cdragin
in reply to Highland49

Yes, I supplement all of the above. I looked at the criteria for Hashimoto's and that doesn't really fit for me. I was convinced for a while that I had Sjogren's, but the test came back negative for that...the anti-hormonal cancer treatment causes a lot of the same symptoms as that. Interesting about the balance issues...my sister has Meuniere's which has recently worsened; I may suggest she get tested for B12.

Highland49
Highland49
in reply to cdragin

You could always try splitting the doses of b12 so that you have a small amount each day. After all your cancer treatments, maybe your body would respond better this way? Once you draw up the syringes and needles, it can be stored safely in a dark and cool place.

I hope you get some answers soon. It might just be that you'll gradually start having more good days than bad. And lots of people find CBD oil helps.

cdragin
cdragin
in reply to Highland49

What is CBD oil?

I get the glass ampoules online, they don't really store in between doses. Cheap enough, just take forever to get here from Vietnam.

Highland49
Highland49
in reply to cdragin

It's cannabidiol, a naturally occurring cannabinoid constituent of cannabis. Otherwise known as hemp or cannabis oil. It's now sold in health shops and online, where there are blends that help with fatigue, pain and sleep.

cdragin
cdragin
in reply to Highland49

Ha, interesting. Not legal in this state but for sale on Amazon. I could certainly try it on my next visit to California.

Marz
Marz
in reply to cdragin

Hashimotos is the most common thyroid condition globally. Like PA it is auto -immune so without testing for anti-bodies TPO & Tg you cannot be sure you do not have it. We are all so individual when meeting symptom criteria. It would certainly explain your energy slumps/fatigue.

It is well documented that cancer treatment can affect the thyroid - it is a sensitive gland. Also the correct testing for the thyroid is needed - TSH - FT4 - FT3 - not just the TSH.

I have Hashimotos and a B12 issue due to extensive gut surgery for Crohns and gut TB. After a lifetime of being poorly I was diagnosed with Hashimotos at 59 and the last 12 years have been a journey of improving health and now feeling stronger than ever. Swimming a 1000 metres daily in summer - teaching two yoga classes a week and a letting business to organise - all in sunny Crete 😎 ...

Hope you soon find some answers ...

cdragin
cdragin
in reply to Marz

That is inspiring. I've always been physically active, and after cancer I resolved to be even more so, only to find I couldn't maintain it. I know I have been "tested for thyroid" but I don't know if I had all the tests you mention. My GP is actually fairly open to requests -- she ran the Sjogren's test at my request -- so I will be sure to ask about that at my annual physical. It seems like a lot of people on this board also have Hashimotos.

Marz
Marz
in reply to cdragin

I think many of us on Thyroid UK here on Health Unlocked have B12 issues and pop over here as well as vice versa ! Sadly in most countries Docs have been persuaded the TSH says it all ... it is only part of the story. The link below will tell you everything thyroid 😊 Happy to help ...

thyroiduk.org

I was starting to wonder if I had ME as well as B12 deficiency as I felt I had stopped improving. I have never had any noticeable improvement after an injection. It was suggested recently to me that I try injecting daily as that is how others on this forum

improved. It took them 3 weeks of daily to see an improvement. I had a noticeable improvement after 6 days where my head was clearer and I could focus for longer. I then noticed having more energy.

Everyone seems to respond to treatment differently. It certainly can’t hurt having a go.

cdragin
cdragin
in reply to Padders12

That's really good to know, thanks.

I was thinking about how we are supposed to have loading doses before going on to a more widely-spaced regimen. In my case, it was weekly for a month, but maybe that simply wasn't enough. I know some people have said they would get loading doses until symptoms disappeared...sounds like that is better than a more regimented approach.

And along those lines, it seems like if you're an idiot like me and decide to train for a 5K *and* add high-intensity interval training at the same time, and fall down into a hole of fatigue, that one jab is not going to be enough to undo the damage. It's going to take another series of loading doses to get back to "normal". Whatever that is now.

I'm glad to report that I do seem to be on the upswing...I did my second self-injection, under my husband's supervision, on Saturday. I managed to bend the first needle by jabbing it into my hand while removing the cap, then knocked the ampoule onto the floor and broke it, and it took 2 tries getting the needle into my thigh, but I did eventually succeed! I'm sure it will get easier with time, but I needed to lie down after just to recover!

cdragin
cdragin
in reply to Padders12

After the 3 weeks of daily injections, what interval did you end up settling on? Or do you vary it based on symptoms?

Padders12
Padders12
in reply to cdragin

I am only 2 months into doing this and still inject daily. Over the last 2-3 weeks my energy levels have dipped a bit so I am experimenting with supplements. The 2 people who recommended the daily injections are Polaris and denisemilden. I can’t remember which one but know that one of them has settled on alternate day injections. I am not sure when or if I will change the frequency. I want to make sure I am the best I possibly can be first. I don’t seem to notice a return in symptoms. I only seem to get the slow decline in energy/ clarity which is less noticeable and therefore don’t react quick enough and end up really unwell again. I am not in a hurry to change the frequency yet. I know that both Polaris and denisemilden will be happy to answer any other questions you may have that I can’t answer x

It’s not much fun injecting but having control certainly makes me feel better.

I have now been referred to neurology to rule out ME etc but I now think my ongoing symptoms fit with peripheral neuropathy more. Only a neurologist can give me further advice etc. Got to wait until 22 Oct though!

Don’t expect a quick fix. You may be different but I am learning that most people seem to have slow improvement. I would suggest not trying to run before you can walk. I am just pleased to get through the day without yawning constantly from 3pm and being really irritable. I still have ups and downs with my energy. I think I may have to accept this is the new me and realise sometimes I can do things and others I can’t.

I won’t give up trying to improve but have stopped putting pressure on myself. I hope more frequent injections will help you too. Don’t forget to make sure you are supplementing with folic acid and magnesium. Check other posts on here for more info on supplementing. Good luck and let me know how you get on x

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