Getting GP to take tiredness seriously

[Jellyjumpers]

I have had a range of symptoms over the last two months from pain in my stomach on the left, a hip pain diagnosed as sciatica, random constipation and a general feeling of not being well. While I appreciate that symptoms healing keeping me awake at night will lead to tiredness I do not think the way I feel is normal. I can sleep on my train journey to work, again in the toilet at work he bearly able to keep eyed open in meetings etc

This weekend I have slept well at night for at least nine hours, then had a five six hour sleep yesterday and two hours today. In my last appointment I mentioned this and was told tiredness is normal with pain. Does this sound right particularly as I feel a bit unwell all the time as if I am about to get a cold, with the same sort of tiredness

Which anti-spasmodic are you taking?

Nebeverine i have had byuscopan and something else in the past

First born have you gone back to work or are they still saying you are a health hazard.

I am awake again with stomach and sciatica pain and wish I had some way of not being affected at nighttime like this. Hi 👋 I have

I would insist that they check your vitamin & mineral levels, especially B12, vitD, iron and ferritin.
My levels are extremely low and the sheer exhaustion is debilitating. Even sleeping 8 hrs, I'm exhausted all the time, so that could easily be what's causing your issues.

@PetuliaBlavatsky, took me 6 months to get GP to test my levels. My B12 is 64, and I'm told it should be somewhere between 500-600 ideally (range is 300-900).

I also have endometriosis, for which I had laser treatment to get rid of lesions in abdomen, and then mirena fitted (about 2 yrs ago).
I get pins and needles a lot and my memory is atrocious. I'm also losing a lot of hair and get chest pain.
I have rheumatoid arthritis and fibromyalgia.

Atm, I'm on vitD liquid, iron, folic acid and I'm on B12 injections every 10 weeks, after having 6 injections over 12 days. I'm also on a biological drug for my RA.

We seem to have a lot of issues in common as I'm always in pain too.

@Jellyjumpers I phoned in sick today!! I can't wait for this morning sickness to pass!

Thanks science is truth, yes I would like them to test vit and mineral levels. However, as I am not even getting help with pain management when I am awake for hours at night I am not very hopeful.

I have previously read that endometriosis can be linked to lots of conditions possibly due to the immune system.

I do not want to waist medical time but do not know who to see if I continue to have significant problems sleeping all night due to pain..

First born sorry to hear you are not well again. I hope your work has been supportive.

Jeez @scienceistruth with that level no wonder you are struggling. Mine was 100 and some days I just couldn't even walk. B12 deficiency will give you the pins and needles and memory loss - it affects your whole nervous system and some badly affected people have ended up in wheelchairs. You should be on much more frequent injections than 10 weekly, the guidelines are that if you have nervous system symptoms you should be on every other day until no further improvement. No one ever gets this though. I managed to get monthly ones for almost a year and was then shunted back down to 12 weekly so I now inject myself.

I'm just following as I share a lot of your symptoms. I don't have any advice, I'm at a loss as to what to do for myself

@PetuliaBlavatsky, are you in the UK? I need to do something, as I don't even have the energy to get up, let alone look after the house, 2 dc and 6 dogs/ 1 cat, etc. I don't have the energy to eat, especially if I've made dinner; I'm just too exhausted.

Sorry, if I'm derailing thread. I don't mean too.

I can't even remember to call Dr for follow up appt as they're only open 3 hrs in the morning and 2 in the afternoon, and when I do remember they're either closed or the line is busy, or I've fallen asleep/not woken in time.

For both though, if you haven't got through in the 1st 10 mins you have to call back on the next session as all the day's emergency appts are gone.

If I book a normal appt I usually have to wait 3-6 weeks for space, so it's not usually worth it.
I've just waited 3 weeks for a phone appt and they texted me on the day to say they couldn't get through so I need to make a new one. I'm just fed up and don't have the energy to deal with it.

@Jellyjumpers, I just kept bugging them and kept asking for them to do these specific tests as I even fell asleep in my car with my handbag on the seat and the windows open and phone in my hand!
I'd pulled over to check stock level in a shop and promptly fell asleep til my oh called me an hour later to see where I was.
I'm just lucky no one stole anything!

Science fiery sorry to hear you are having such problems with a diagnosed condition. I don't think you are derailing things. It is helpful to have updates from anyone who is battling their gp for tiredness or pain.t

Your B12 should be at least 500 and preferably double that.

Folate has been low, so you may need a methyl folate supplement and B complex to balance everything out (but not until your B12 has been sorted).

TSH alone is useless for telling you what is happening with thyroid. You may need to do private testing to rule this in or out.

Yes I'm in the UK @scienceistruth PM me if you want to talk about it, I know how crappy this disease is!
It's a cruel irony that you need so much energy and willpower to battle the GPs for better treatment when you have literally nothing to spare. Please check out the Pernicious Anaemia society website and the pernicious anaemia and B12 deficiency support group on Facebook - massive amounts of help and support and information.

Are there any specialists who cover b12? I wondered if they can put pressure on to get more injections provided.

Is there anything I can get over the counter to help he he sleepy enough to go back to sleep when woken with pain. I am in so much pain now from my stomach and sciatica that the thought of bedtime is making me cry. I just want to be able to sleep and have given up that the GP can help.

Haematologists would usually be the consultants involved but most B12 patients are just handled by gps. I take amitriptyline to help sleep when I have pain (from another autoimmune condition) and find it very helpful, I just take one as and when needed.

Thanks
While I appreciate not possible for everyone I was wondering if a private consultation with a specialist could be helpful for those struggling with b12. In the past my gp gas been happier to prescribe more medication than they would typically if a consultant has written that this is needed.

I asked the gp for anitriptiline as found it the most helpful thing for endometriosis pain in the past the arguement was that this has side affects of constipation, but it is not doing me any good to be awake every night with pain. I am convinced that any constipation I have had gas been better when I am in less pain. I am not sure why they are seeing constipation as such and issue as surely if I was verry backed up it would have shown on xrays or ct scans before they claim this is the issue in hospital.

Jelly I would hazard that your tiredness and exhaustion is directly linked with your poor sleep. What you need to tackle is your pain which is clearly affecting the quality of your sleep.

Re. Vit B12. I had mine tested and it came back at 440 so gp said it was OK, however, I was severely megalo anemic (or whatever its called). My gp wasn't interested in this result though, he didn't even know what it really meant even though research showed it was a common outcome of low vit b12. Further research also indicated that the standard NHS test wasn't always reliable as it only test all vit b12 in the blood when the issue can that of mal-absorption.

I'm the end, I ordered some bit b12 and started to inject myself. First 6 injections, felt a lot better but then went down again. Started again, and then a third time and finally started to feel more stable. Since June, I inject myself once every 3 to 4 weeks.

I now recognise the main symptoms that it is time for an injection and in my case its when my sense of balance, feeling faint, pins and needles and vision is affected.

Unfortunately my poor sleep is related to the menopause, not the b12 so I'm still battling fatigue most days.

I would definitely say that it is worth trying b12 treatment regardless of result to see if it helps with the pain.

Swing thanks for your message. How did you learn to inject. While injections don't bother me I am not sure I could do it myself

I agree that it is important to improve the pain and sleep quality to know if I really am exausted or just struggling with the lack of sleep.

@ScienceIsTruth Just wanted to ask - are you taking Sulfasalazine for your R.A.?

OP - when you take any anti-spasmodic/codeine/other painkillers, what dosage do you take? How often do you take them?

Do you find you forget things especially towards evening/night time?

@Jellyjumpers I self-inject too. Subcutaneously, into my stomach (four finger width away from belly button). It's quite simple, just watch a couple of YouTube demonstrations from people who also SI.

Its not painful at all, and I hate needles. Just the tiniest of scratches.