Hi been around the block with docs have prostitius bowel problems possible arthritis sleep problems have had migraines and this all started about 8 moths ago after sinus infection I have noticed a pattern that if I over do things I can really pay for them just wondered if anyone has had there muscles seize up on them when they are walking it's happened a few times so depressed seeing a rheumatologist soon for clicking in my bones in arm and shoulder and I want to ask him about my muscle problems just want some kind of diagnosis
hi russ. sorry to hear ur having a dificult time at the mo. it can't be easy when symptoms pile up like that.
yes indeed, u can have other conditions along side ME/CFS. in fact other conditions often go undiagnosed as docs tend to put everything down to ME/CFS without checking for, or/and ruling out other conditions.
however, as ur most probably aware, the symptoms u mention are v. often part n parcle of the ME/CFS symptom picture. i'm wondering what u mean by the muscles 'seizing up' russ? is it is a 'seizing up' coz of the stiffness of arthritis or a 'seizing up' whereby the muscles (particularly the leg muscles) don't seem to get the messages from the brain to keep going.
for example, i get leg seizing, but it's caused by sudden loss of the finite amount of energy us ME/CFS ppl make at any point in time. my legs just suddenly go heavy and refuse to move. it might be crossing the road or in some other inconvenient setting. i have to rest and wait a couple of hours for the energy to be manafactured in the mitochondria of the cells before i can move again. that can take a couple of hours. taxi's do well out of my condition lol. hope that's useful?
best wishes
Caitlin
what has helped me enormously was having my b12 & folate deficiency addressed. low b12/folate are v. common in ppl with ME/CFS. in fact, these are 2 conditions whose symptoms mimic those of ME/CFS. some ME/CFS experts strongly recommend that ppl with this condition should keep their b12 levels much higher than the standard (normal) levels. once i got treated my energy improved measurable and my cognitive skills (memory/recall/concentration/communication skills etc) massively improved. it might be worth asking doc to check for these as well as thyroid levels i.e. TSH, T3 / T4.
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
Of course you can have other conditions. At the same time, I've found an amazing number of symptoms are related to my ME/CFS. For instance, I have nerve issues, sleep problems, cognitive problems, and orthostatic intolerance, to name a few. Your muscle problems and migraines could also be a part of this illness. Digestive issues are also very common with ME/CFS--don't know about your bowel problems. This illness is very complex, and many doctors do not know much about it, so they often attribute symptoms to psychological issues. Very insulting. If you can, see an ME/CFS specialist, like an infectious disease doctor.
I will find out what it is just been a long process I understand about the sleep 3 hours max I have had for nearly 8 months been noratryptline high dose didn't help one bit I will persist pushing docs unfortunately I have had to push them thanks for your reply
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
Hi Russ, sorry you're not having a good time right now and it can be quite scary wondering what next is going to happen to your body. I noticed that you are taking omeprazole, I also take this. I have had ME/CFS for over 30 years and have had many, many times when life has returned to normal - yes it can happen so don't give up! However, since I started taking omeprazole, my illness has returned so much so that I have had to give up work. I also have other complications because of omeprazole. I can't prove it has brought my ME/CFS back, but I do wonder... To combat this, like others, I take supplements which you might want to look into: vit B12, magnesium, co-enzyme Q10, omega 3 and D-ribose. I have found on the occasions when I have run out of the D-ribose (which is a sugar the body makes) my ME has returned with a veneance after 3-4 days.
Good luck!
Hi sueliz thanks for the info on the supplements I take omega 3 have actually have some of the co enzyme but never took I have decided to come off the omazeprole and try something else I have had a sore throat and been coughing up mucous in the morning sines starting them 2 weeks ago but I have rantadine need to try them as I have mild scarring as results from a gastrosopy a few weeks ago I really hate taking medication I seem to really struggle with the side effects anyway will try and keep on being positive thanks again sorry to hear you have had the condition for so long I feel for you
Ha ha don't worry about me Russ! I've had it so long now I'm used to it! I tried to come off the omeprazole but I was knocking back gallons of gaviscon so had to take it again.
Haha good attitude to have fair play to you,there was one particular time I look back at visiting a private gp when I was very poorly so I could get referred to a specialist I had a list of symptoms as long as my arm he went through most specialist with actions acting out who I need to see in the end I had to decide which was a neurologist because of the pressure in my head I totally baffled him it wasn't particularly funny at the time but when I look back now have a bit of a laugh at how confused the doctor was I suppose that's the attitude I need to keep up as I have noticed stress can flare up symptoms for me thanks again
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