Can you have other conditions and still have chronic fatigue

hi russ. just sent u a msg. but it seems that the system has fragmented it. hope it makes sense. if not let know.

best wishes

Caitlin.

Hi Caitlin thanks for your advice on the vitamin b12 had thyroid checked had a lot of blood work done even my esr came back ok for inflamation my vitamin d was low unfortunately have acid reflux taking omezaprole this dosent help with magnesium and b12 intake apparently I eat really healthy .i am trying to get as much help as I can so difficult without a diagnosis .with regards to my muscles its in my arm and shoulder where I am expecting it to be some form of arthritis although have had a shoulder injury a long time so not sure about that one .with my legs and sometimes back it's different I do volunteer dog walking to keep me busy sometimes I have noticed in my legs they just really stiffen up and basically I have to stop and go home I pushed myself last week I was feeling ok and said to myself I need to keep doing it then bang it was like I just had to rest for days that's seemed to be the pattern sometimes I just want to give up nobody understands they think I suffer from anxiety but I keep going in hope I will get better what ever it is sick of guessing tbh thanks for your help

hi again russ. pleased to hear the medics are, at least, looking at relevant stuff like vit. D deficiency. do u know how low it is and what treatment ur on? the shoulder pain maybe related to, or exacerbated by the vit. D deficiency.

the other likely suspect might be a frozen shoulder (FS). have a google of same & see if the symptoms fit. u-tube demos for diagnosis is often helpful. whether FS or old injury playing up, it would make sense to have an x-ray or a scan to literally, throw more light on it. unfortunately, FS is another condition found in higher than average incidence in ppl with ME/CFS.

re: the 'normal' ESR. u can have inflammatory disease eventhough the ESR tests normal. it's a relatively non-specific test. there are other more specific inflammatory blood test indicators that can be done.

the other support system that may help, might be to ask doc to refer u to the nearest ME/CFS specialist clinic. there's a number of them in the UK. they run 6-8 week ME/CFS management courses which r good at helping u to 'pace' yourself. they can help u find what your 'baseline' energy level is. this would help u to more 'safely' & more efficiently plan ur daily energy expenditure. consequently it would help decrease the 'pay back' penalty from over doing it - kinda put u in the energy drivers seat. also, some of these specialist clinics insist on a number of 'recent' blood tests to be completed before accepting u onto their courses. the GP, therefore, would have to do these. they include the b12/folate etc. etc.

keep heart Russ, it can only get better. chipping away @ the obstacles makes ur pathway easier in the long run.

all good luck with it.

Caitlin

Hi Caitlin thanks for all your info will ask about these things my vitamin d was 27 I am taking supplements 20000 two times a week doctor give me X-rays which was fine but I knew that so had mri yesterday on shoulder as doc said he couldn't give me mri shocking really.i asked early on with my symptoms but tbh the doctor was correct I needed to see a neurologist as I was having pressure in my head and partial seizures which they said was servere hemplegic migraines scared me to death 2 months of it I suppose as time has gone on and to a extent things are better than initially I can see what's what now and have more confidence in myself to ask these questions to doctors instead of being passed off as anxiety thanks again keep in touch

gosh Russ, u've been through the 'medical mill'. hopefully ur over the worst by now?

i'm astounded they haven't done an MRI? is that down to financial resources?

think it's a good move to see a neurologist & i'd definitely get the b12/folate levels tested. have a look @ the ''health unlocked'' -Pernicous Anaemia web site - PAS for short. it's v. user friendly/accesible.

hope the wait for the neuro. isn't too long.

all good luck with the next step.

keep us posted.

Caitlin

Hi Caitlin no sorry I think I may have confused you I am under neurologist and have had scans on brain and cervical spine but my shoulder I had to get myself or basically keep persisting with gp ,the migraines have passed now thank god that's how all this started after a sinus infection then the hemplegic migraines followed by all the other symptoms I am a lot better than I was thanks I have a referal through today for a rheumatologist for my muscle aches and clicking in my shoulder and arm maybe he can diagnose whatever it is if not then the next step will be chronic fatigue clinic as I don't know who to turn to anymore will keep you posted another month wait for the rheumatologist used to it now

good to know u've seen the neuro & hopefully the rheumatologist will throw some light on the shoulder. the problem is, it takes for ever to navigate the system. u r, however, nearly there.

all good wishes with the journey.

Caitlin

Hi yes I am nearly there that's what I keep telling myself that's been half the battle finding out and the battle with docs and know one believing me that I am ill I was never looking for sympathy just someone who would understand what I am going through I appreciate these forums very helpful thank you

Hi Caitlin just had some blood tests back the ones you suggested vitamin b12 was low in my opinion after doing some research at 290 I think it's quite low my diet is good Iets not forget I have been really hit hard with all this and for about 3 months I struggled to get out of bed so I think a lot of my immune system has took a big blow .

The doctor was not intrested in the b12 said it's ok I don't think I am absorbing it that well as I have digestive issues and have had loads of antibiotics I see my neurologist this Tuesday i am becoming frustrated with docs I may need to change my attitude slightly with neurolgist they don't like being told there job I have found something is not right I have another infection now so tired of it going to start taking vitamin b complex although I have heard of these strips which absorb straight away any advice much appreciated hope all is well Russ

hi russ. sorry to hear ur feeling so under par. know well what it feels like. at 290 ur in the what's known as the PA 'grey zone' i.e. symptomatic but levels normal according to our guideline levels. however, according to up to-date research literature ('Could it Be b12' etc) these levels are far too low. for example it's 550 in Japan.

if u go to the 'Health Unlocked' web site under the Pernicous Anaemia Society (PAS) section, u'll find guidelines for the treatment of the 'grey zone' symptomatology. these guidelines are also clearly delinated in the NICE guidelines for symptomatic b12 def., as they are in the British Haematology Society & PAS guidelines. btw, ME/CFS experts strongly advise that ppl with our condition (ME/CFS/FM) need to keep our b12 levels @ 2000 or above. that can only be done by injections.

if ur Neuro. is well informed s/he will action ur levels. if not, u might have to draw their attention to it. i know what u mean by getting the medic's backs up by making any kind of suggestion, or by being informed. it's a difficult one.

btw, did u have ur Folate levels done? if the Folate is low, the b12 won't work. they are interdependent. once i got my b12/Folate levels sorted my IBS almost dissipated. i used to pass out with the pain. recurrent infections, brian fog etc. improved massively. in fact i'm begining to think that my route to ME/CFS may have been via low b12. PA runs in the family.

good luck and let us know how it goes for u.

all the best Caitlin

Hi Caitlin thanks for the information I was shocked at my docs approach to this he knows how I have been suffering is it because I asked for the test maybe ,my folate levels he said was ok I never managed to get the number he was rushing and I could tell he seemed disinterested just gave me more antibiotics for a throat infection and today I tryed to get the opinion of another doctor he said it's fine and asked me where did I get my information , but I think I may ask to see if my doctors can email my results to the neuro not sure if they have my details thanks ever so much I think I just have to keep persisting this may also the reason I don't sleep well too thanks again

Hi Caitlin just to let you know my folate was 7.0 is that low ?going to neuro tomoz thanks

Russ

hi russ. hope u keep well. re: ur folate results: whilst it's well within the normal range (3-13 ng/ml), it's always better to have these vitamin levels (like b12) @ the higher end of the scale spectrum. this is particularly important if one's gor ME/CFS. whenever they ask me where i get my info. from, i usually say from the NICE guidelines. that seems to get their attention. there's also the BCSH (british committee for standards in haematology) or/and the PAS society. all 3 concur on b12 d. protocols i.e. neurological symptoms sould be treated with replacement b12/folate until there's no further improvement followed by a 3 monthly maintenance dose. hopefully the consultant will be well informed & helpful tom. fingers x.

let us know how it goes.

Ok really worried this clicking sensation In my left arm where I had problem is started in right now I had mri in left shoulder now saying was arthritis just praying it's nothing serious only 36 really worrying me hope it's not rheumatoid arthritis there has been that much going On didn't address it as I always had problem in left shoulder it's been terrible last 2 years hope I can recover thanks for info again hope your ok

Russ

hi russ. i certainly understand ur concern for the long term. however, hopefully the con. will be able to rule out some stuff tom. if it was anything sinister it would have shown up in the scans.

Caitlin

Yes your right had x rays and mri sorry it's been a long battle and some docs made me believe it was in my head I am taking a notepad Tomoz writing everything down as last time I was that poorly with the hemplegic migraines major concern was that and w mris of brain and cervical spine where essential thanks for your support I only wish I would have been more assertive with docs at the start of all this I wasn't to know thanks again

hi again russ. do u have anyone to go with u tom? the medics tend to respond more productively when there's a second person present. the 2nd person can always help with the note taking whilst reminding u of any questions u wish to ask. it's good to have the moral support too. it's always good to make a list they night before?

Caitlin

No unfortunately everyone works my mum not to well maybe try my brother let you know what happens

i'd ask bro., think it would make a big difference.

Hi Caitlin my neurologist was excellent giving me b12 injections having nerve conduction test more bloods she doesn't want to give me lumbar puncture yet for ms as mri ok and she thinks it's chronic fatigue also refered me to physio and cbt so happy in a stange way thanks

hi russ. i'm absolutely delighted for u. thank heavens u got an enlightened Neuro. u'll find a mammoth difference with the b12 replacement therapy. it may take a little while to feel/see the full results, but it will happen. if u don't get prescribed folate with the b12, i suggest u self-supplement. also it's a good idea to take a b complex vitamin to ensure optimum results and balance. do keep us posted. bet u feel better already, having had at least one good medical experience - a big sigh of relief i'd imagine.

Caitlin

Yes delighted that someone has finally took notice she send a letter to gp now for b12 tests so just waiting I just wish I they would have acted sooner

well, it sounds that this Neuro is up to speed with the b12 treatment protocols & understands the ramifications of b12 d. in ppl with ME/CFS. what a relief?

if, for any reason, the GP goes on about ur results being within the ''normal'' levels (which is most unlikely) u can always ask for the b12 test that measures the ACTIVE b12. u might have to pay for it (£20) but its worth it to get the proper ongoing treatment. however, i'm sure that won't be necessary. hope the GP gets to work straight away?

Caitlin

Yes she was really good even did tests for my digestive issues she tested b12 again maybe it's just procedure I though I might have had the injections today I need to be patient just worry about all this time I have been struggling if there has been damage done sure docs will be will help me now did the b12 help your digestive issues

she truly sounds a ''proper'', thorough & ''listening'' doc? perhaps we could get her cloned for the rest of the ME/CFS community lol? do u know what tests she did for ur digestive challenges? do u know if u have been tested for coeliac & chrons disease?

yes, the b12 replacement helped enormously with my IBS. prior to treatment i used to pass out with the pain when it flared up. i haven't had a severe flare up since commencing the b12 treatment. also, i have a frozen shoulder (v. painful) that responds well to the b12. it helped my energy/memory & general cognitive faculties measurably, including the fibromyalgia. in fact i'm now convinced that my ME/CFS started coz of low b12. i caught an infection that i couldn't get rid of & never recovered properly. PA runs in the family. did she tell u that she'd send u a letter for the GP?

Hi Caitlin yes she was really good she could tell I was suffering I broke down at one point to be honest when I was telling her everything that had happened she said she would send a letter to my gp I think it must be procedure when I see my first neuro he had to do the same to prescribe medication took about a week or so will just have to take the supplements in mean time she is going to test for colieac thyroid liver kidneys some bone thing and a few more but she said she could only help so much with that so I may have to push docs for that I feel a bit better I need to address this acid reflux have a chronic cough and post nasal drip as I have chronic rhinitis and guess what this is how all this started for me 2 years ago with chronic rhinitus kept getting infections after that never the same person I was in for a op to help but I was that ill no chance I need to see a ent to think before I prob not seen a doc in a long time I am now going through the list of all the specialists oh well it's cheered me up maybe the b12 will help with the reflux as well thanks Caitlin for the information I prob wouldn't have asked

hi russ. yes, ur neuro sounds a compassionate, understanding & empathic medic who knows her subject & acts accordingly.

i'd imagine that she's got the ball rolling for u & the GP will follow up with the b12 replacement therapy. hopefully, she'll 'spell out' the ' b12 treatment protocol' for ppl whose serum levels read 'normal' but who are neurologically b12 symptomatic. it's great too, that she's done a range of tests to rule out coeliac, thyroid & other auto-immune type conditions that frequently present along side b12/ME/CFS. have u had ur iron levels & HB tested?

as u'll probably know, the serum levels are set v. low here in the UK. for example the normal b12 level in places like Japan is 500 pg/ml. to compound the situation, our primary health care professionals seem ill informed/aware of the wide ranging ramifications & long term consequences of persistent low b12.

yes russ, i'm quite sure the replacement therapy will help with the reflux as well as help decrease the incidence & severity of the recurrent sinus infections. most ppl find their susceptibility to infections is measurably decreased with b12 treatment. with the correction of the macrocytic (b12) anaemia, the overall blood supply, nerve conduction and muscle function /integrity of the cardiac sphincter should be measurably upgraded, decreasing the reflux problems.

it might be a good idea if u could see a 'nutritionist' (either NHS or privately) to address the bowel flora & stomach acidity levels. it's likely that these will be out of zinc with the repeated antibiotics. addressing dietary habits that encourage bowel fermentation will help all round with the digestive/reflux problems too.

bet u feel mighty relieved that things are finally being properly addressed.

Caitlin

Hi Caitlin my doc has run loads of bloods over last 6 months i am sure he does my iron And hb was checked for auto immune a a while back it's quite confusing trying to keep up with it all I have started taking multi vit and b complex sublingual in the mean time unfortunately I have started to develop more aching in other shoulder and legs really worrying me I have left things so long I am happy to know things are being investigated what other things could be causing these aches and throbbing pulsing sensation I eat really well it's almost like my body isn't absorbing it or maybe the sleep deprivation I go through I hope I can turn things round Caitlin my symptoms are complex

hi russ.once the GP starts u on the b12 replacement treatment, things should start to get better and all those symptoms should start to improve.

meantime keep positive - ur on the road to better health.

look forward to hearing how it pans out.

Caitlin

Hi Caitlin yes I try and keep positive I hope the b12 works ok I will let you know I believe it takes time to see some results so I will try to be patient thanks ever so much for your time hope your well take care

hi russ. hang on in there. u'll begin to feel better once the treatment commences & begins to take effect. keep checked in here with us. there's lots of info. available and everybody's supportive. most will have had similar challeging situations with this multi-system, complex condition. below is a little poem that may help cheer u up.

The sun will shine tomorrow

The rain will somehow end

This is not a promise

It’s just the way it is

The dark clouds that hang above

Will eventually move on

And the storms that dance around

Will soon be gone to ground.

Stay strong and keep in mind

That again, the sun will shine

Hi Caitlin thanks for the poem really nice this Monday I see rheumatologist not been to good I have a feeling this is fibromyalgia as well I have pain in knees ankles shoulders elbows and my joints are cracking in hips last night really frightened me I have no energy at all really concerned it's so complex do you get these aches stab in pains my body pulses everywhere so confused by it all still had no news on b12 either anything you can suggest to ask rheumatologist much appreciated hope your ok

hi russ. nice to hear from u. gosh it seems that u've been having an even rougher time than normal?

thankfully, u have the appointment on monday & hopefully the rheumt. will be able to give u a definitive diagnosis on the clicky joints/pain. it's so difficult to know what's causing what with this condition coz, so many systems can be involved & all at the one time.

the 'pulsing' pain/sensation could be 'nerve pain/irritation' due to the low b12. i'd give the GP a ring on monday to nudge things on there. u need to have the b12 treatment asap. a response to that treatment (or not) could help narrow down or even eliminate other potential causes. have u had any info. re the CBT as yet - that too may need 'nudging' onwards? i'll send u another e-mail shortly re appoinment with rheumt. on monday.

Caitlin

hi again Russ. re: the appoint. on monday, the rheumt. is likely to ask questions around what the GP will have written in the referral letter. s/he will have forwarded any recent blood results, scans/x-ray results, a brief overview of ur medical history & current presenting symptoms. id magine the GP will have completed & forwarded these results, specifically the results of basic blood tests for:

1)rheumatoid arthritis (RA) i.e. they'll have tested for the presence of RA factor.

2)ESR (erythrocyte sedimentation rate) gives an indication of inflammation levels. it's a non specific test as it doesn't tell u what exactly is causing the inflammation or where it is in the body.

3)CRP (C-reactive proteins) another inflammatory evaluatory test. it's more sensitives/specific (albeit also a general test) where some rheumatic conditions are concerned. do be aware, however, that there are over 200 different types of arthritis/connective tissue conditions.

a FM diagnosis is generally made based on a specific criteria that tests for 'tender points' in the body. there needs to be 11 out of 18 present & for a period of at least 3 months. this is used in conjunction, with the clinical history & the results of the blood tests. i guess what u'll need to take away from the appoint. is a definitive diagnosis (if there is one) so i guess u'll need to ask the rheumt. that question.

russ, i always think it's a good idea to have someone with u in these potentially 'emotionally charged' situations. it helps dilute the ''expert'' v patient, power dynamic. the emotional/moral support of another person helps to 'centre' & empower us to ask questions & not be fobbed off. it also helps clarify what's been said too. sadly, i've found that since, the recent health reforms, the patient/client needs to be their own advocate. hope this is helpful.

Caitlin

Hi Caitlin no one to come with me all at work ,this journey so far has been very Lonely I need to change my docs I might actually complain he received letter from neurologist stating I was suffering from chronic fatigue his reaction oh you have chronic fatigue now go out and get drunk go to a concert had a bit of set to he asked me if I was a hyprocndria this is what I have been up against had to really push I will get answers now had enough now I am recording this appointment Monday for my reference I will be ringing neurologist for b12 injections I am not taking it anymore it's hard enough getting through a day I want a diagnosis nearly 10 months now I will be fine I am getting used to pain now thanks for your advice again keep you posted

hi again russ. i couldn't agree with u more. the ME/CFS journey is indeed, the loneliest possible life path. few understand the condition, apart from those who have it & fewer still want to. ME/CFS is a life stealer.

from what u say re the GP, i'd certainly change. he sounds totally unprofessional. might be worth changing practice if they have a culture of 'flippancy' in that particular practice. PALS (Patient Advice and Liaison Service) may help u with that process if needs be. it might, however, be a good idea to keep that nice empathic Neuro on ur side.

let us know how monday goes.

all good luck with the appoint. will be sending positive thoughts ur way

Caitlin.

Hi Caitlin

To be honest I thought about these possible diagnosis early on in my condition and did speak to a m e clinic who listed docs who are more informed i never did change but it was so complex At the time and I just didn't have the energy to do anything mentally and physically I'm on the right track now let you know how get on thanks

good luck for tomorrow russ. i hope it goes v. well for u . do let u know how it goes?

all good luck & positive thoughts

Caitlin

Thanks Caitlin speak soon

Hi Caitlin

Fibromyalgia and chronic fatigue diagnosed b12 has gone up vitamin d to high 121 prob more so will stop supplementing relief at last no coeliac all symptoms are generalised to these conditions antibodies was ok finally

hi russ. wow........ thank heavens u have a diagnosis. was s/he able to put u on a treatment plan?

Caitlin

Hi Caitlin

Amitriptyline to help with sleep not sure about it noratryptline never helped but may consider for a trial there is a fibromyalgia clinic I am going too cbt which I will recieve in due course I have been told to pace myself she said it's in the same spectrum chronic fatigue so more than likely have both feels like a weight has been lifted can't wait to see my doc now I am still going to change gps I am not being treated like that I will see him tomoz not going to get stressed about it this time ,tho supplements are working fine for b12 rheumatologist said keep taking supplements gone from 290 to 480 in 2 weeks will just keep taking them thanks for all your support much appreciated must keep in touch

well done u. ur peristence & courage has paid off 10 fold. it's such a travesty that ppl with these conditions are treated SO badly by primary health care professionals. it seems that the more compromised (health wise) & vulnerable ppl are, the worse they are treated by the public services. sadly, it seems to have become a 'survival of the fittest' society???

i guess the consultant is looking to target a couple of symptoms with the amitriptyline. it has has a good track record with treating the nerve pain that comes with FM & b12 def. it's also an anti-depressant & helps with sleep to varying degrees. hope it does the trick for u in these areas.

re: the b12, i'd say keep on with the supplements. apparently us ppl with ME/CFS/FM need much higher than the normal levels of b12 to keep symptoms at bay & to keep us ticking over in a number of areas. i found that, when my levels reached an optimal level, all of my ME/CFS/FM symptoms drastically improved. and when my levels begin to drop those symptoms creep back.

good luck with the FM clinic & the CBT. this integrated approach will, no doubt, yield good results. congrats again on ur achievements. no doubt, ur news will empower & encourage others on here to persist with getting proper treatment for these condition.

do keep in touch & keep us posted with ur progress.

all good wishes

Caitlin

Thanks Caitlin kind words you shouldn't have to persist with docs about these conditions i have no news about the b12 injections from my neuro which it am bit confused but I suppose it's good that it's going up quick I researched and have found that you can take as much as you want so I suppose just keep taking the supplements maybe I feel some difference later down the line still confused why it is so low maybe was depleted when I became very unwell it's been a relief to speak to people on these forums so helpful can't wait to go to the groups to here how people cope many thanks Caitlin take care for now like I say will keep in touch