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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Fucking fed up of feeling like shit

141 replies

geezoh · 28/05/2023 01:50

Just wondering if anyone can help at all. My life is absolutely ruined now

im in my early 20s and really struggling with my health.

it started around Christmas time with being permanently exhausted. No matter how much I sleep, I’m shattered. The other day I had a good quality 10 hour sleep, and went out with my friends for 2 hours and was to tired I had to come home and sleep for 3 hours. It’s like that but all the time, no matter how much or little sleep I get. I feel like I’m permanently drained. That started around Christmas- I went to my GP back then and had a blood test and it was all normal. No low iron/folate/b12/vitamins- I saw all the results with my own eyes and they were well within normal. I was advised it was likely stress so I tried to destress my life but it’s made no difference.

im now getting other symptoms- horrendously itchy skin (to the extent I’ve scratched all my skin off on my neck overnight because it’s so, so itchy- I’ve had allergen testing done at the hospital which was all negative too), I’ve had random blotching on my skin but NOT from itching, it started happening out of the blue and NOT just after I had scratched it. It was like lots of little tiny red spots all up one arm- it was like red pen dots. They didn’t disappear under a glass. They went away after a week or so. I’ve also had leg weakness- it started as a weird tightness and ache in my knee and got worse until it was an ache all down my lower leg bone. I get pins and needles in my feet too. It was only on one leg but now it’s happening in the other too. I can’t fully straighten my legs because of the aching but I also can’t completely bend them without getting aching too. The best position is almost straight but slightly bend but even then I still get on and off aches. It gets really weak easily too- if I sit down even just for 5 minutes my legs are completely weak and will give way if I try and walk on them.

I’ve also had excruciating headaches that have left me physically sobbing and howling in pain

I’ve been to physio who tried several things and it has made no difference. I’ve been back to the doctor with all the symptoms I’m having and they have no suggestions other than it’s stress which I suppose it could be but I don’t feel stressed nor do I have a stressful life. Since Christmas my life has gone to complete shit and I’m fed up of it all. I’ve been back so many times and they said my age means it’s nothing serious which is a relief and also my blood test when all this started was fine, but also I feel like something just isn’t right.

does anyone have any ideas of what I should or could do? I just want to feel like I used to before this all started x

OP posts:
TooManyPlatesInMotion · 28/05/2023 09:48

Hi op. You need to be tested for autoimmune conditions. Push your gp.

It sounds horrible. Best wishes.

Zarataralara · 28/05/2023 09:48

Glandular fever ? IIRC you need a specific blood test?.

Zarataralara · 28/05/2023 09:49

Adding in your sweats and enlarged glands makes me think glandular fever.

Highdaysandholidays1 · 28/05/2023 09:50

Mind/body techniques are not about relieving anxiety or saying everything is caused by stress (although they can be) they are about the fact that the body can get 'stuck' in one pattern of symptoms for a long time, beyond the initial problem. Chronic pain is a classic example of this- the pain is about something real, tissue damage, say, and then it get's 'stuck' (neurologically wired) into that pattern beyond the original problem. I've used these techniques for chronic fatigue and for migraines, worked for both, not to completely remove them but to make them liveable, I also take vitamins/check blood tests/take meds as appropriate. It's not an either/or.

In your case, though, you are young and I'd want to rule out lots of other diagnoses first, some of which have been suggested.

I think it helps to know about mind/body techniques as say you were diagnosed with fibromyalgia, you would still then have to live with it, there's no 'cure', and that could provide another avenue to try (as I say, I do use tests and treatments too so I'm not absolute about the divide).

SleazyLizzard · 28/05/2023 09:50

Sounds like my sister’s symptoms before she was diagnosed with coeliac disease

Highdaysandholidays1 · 28/05/2023 09:51

I do think you should return to the GP though, they can't possibly know what's causing your leg weakness from one blood test.

ukgot2pot · 28/05/2023 09:59

Have you had your thryoid checked? - This sounds a lot like Hashimotos (autoimmune disease) fibromyalgia or CFS. Last winter, I had very similar symptoms to you. The doctor also put it down to 'stress' which annoyed me because I knew it wasn't. I was having a flare up and I've learnt how to control it now by cutting gluten and diary. It's made a huge difference.

I hope you get to the bottom of it OP. Being ill is horrible :(

Sprinkles211 · 28/05/2023 10:03

This happened to my 21 year old cousin they think she has long covid but wasn't even poorly with the covid! Her skin came up in massive blotches like an allergy. She does now take antihistamines everyday and is feeling much better but its taken her 10 months and she keeps reacting to things that didn't cause a problem before it's awful xx

Angrymum22 · 28/05/2023 10:07

Ask for a prolactin test. I was diagnosed with a prolactinoma in my early 20s. Similar symptoms, along with erratic periods. Modern contraception sometimes stops periods so you wouldn’t know if they are a problem.
Testing for prolactin is not a routine test. One of the main symptoms is lethargy and fatigue.

VDisappointing · 28/05/2023 10:18

I have seen others have suggested thyroid - also did they check your vit D? If not I would start vit D straight away - helps with thyroid and autoimmune too (my teen daughter has thyroid disease)

Dodie66 · 28/05/2023 10:20

i have fibromyalgia and several of those symptoms sound the same as mine. All my tests were ok apart from vit D which I now take but it hasn’t made any difference to the symptoms, go back to your GP and ask to be referred to a rheumatologist

Itsmeeloise · 28/05/2023 10:21

Another one thinking that this sounds like b12 deficiency. Had you been taking multi -vits prior to getting tested? If so, it could be that the test detected a decent level of b12 in the blood but it your body isn't able to absorb it b12 then it will do nothing for you - hence the need for injection every other day until no further improvement.

If doctor can offer nothing else to address what are serious symptoms which could lead to permanent nerve damage if not addressed, be firm and ask them for a therapeutic trial of b12 deficiency protocol.

Original poster
geezoh · 28/05/2023 10:23

Itsmeeloise · 28/05/2023 10:21

Another one thinking that this sounds like b12 deficiency. Had you been taking multi -vits prior to getting tested? If so, it could be that the test detected a decent level of b12 in the blood but it your body isn't able to absorb it b12 then it will do nothing for you - hence the need for injection every other day until no further improvement.

If doctor can offer nothing else to address what are serious symptoms which could lead to permanent nerve damage if not addressed, be firm and ask them for a therapeutic trial of b12 deficiency protocol.

No I hadn’t, I don’t think it’s b12 because the level was around 600 so actually a decent level x

OP posts:
Original poster
geezoh · 28/05/2023 10:24

VDisappointing · 28/05/2023 10:18

I have seen others have suggested thyroid - also did they check your vit D? If not I would start vit D straight away - helps with thyroid and autoimmune too (my teen daughter has thyroid disease)

Yeah they checked Vitamin D and it was fine, it wasn’t even close to the low end it was well within normal x

OP posts:
Sarahtm35 · 28/05/2023 10:25

the rash seems like it’s vascular. Have you had covid and/or the vaccine? I would request further testing. Don’t let them fob you off

Sisisimone · 28/05/2023 10:35

I was fobbed off with similar symptoms by GPs, told it was anxiety, prescribed beta blockers and every time I went back suggested I go on anti depressants. Thankfully one of the GPs eventually did an antibody test and I was diagnosed with lupus and sjogrens. It was many many years of being fobbed off though and feeling shit. And yes, you do eventually get anxiety because you know something is wrong but they cant tell you what it is so its a vicious cycle. Don't give up and just keep going back and insisting on more tests, pay for them if necessary

CuriousMama · 28/05/2023 10:42

Have you told the GP about the night sweats? You need a full body MRI to be sure it isn't anything serious. Have you lost any weight?

CuriousMama · 28/05/2023 10:44

Sisisimone · 28/05/2023 10:35

I was fobbed off with similar symptoms by GPs, told it was anxiety, prescribed beta blockers and every time I went back suggested I go on anti depressants. Thankfully one of the GPs eventually did an antibody test and I was diagnosed with lupus and sjogrens. It was many many years of being fobbed off though and feeling shit. And yes, you do eventually get anxiety because you know something is wrong but they cant tell you what it is so its a vicious cycle. Don't give up and just keep going back and insisting on more tests, pay for them if necessary

Thank goodness you were diagnosed. I'm so sorry you suffered for so long without it.

Hamfish · 28/05/2023 10:49

Have you considered bowel problems. You said you have IBS - how has this been confirmed? Any possibility it could be bowel cancer (tiredness, night sweats). Itching is also representative of liver problems. Whatever it is you need answers so find a different doctor

SkiingIsHeaven · 28/05/2023 10:55

I have suffered from tiredness and joint pains and was dismissed by the go as having stress. I have started taking a number of supplements including iron and vitamin D amongst others this and feel a million times better. I don't need afternoon naps anymore either. I was told my iron was fine but the supplements seem to help anyway.

inloveandmarried · 28/05/2023 11:00

It won't hurt to take a decent B vitamin complex with extra B12 and iron. I use floradix and do the two week course.

If this makes a difference you'll know quite quickly your body needed more.

neveradullmoment99 · 28/05/2023 11:01

OnlyFannys · 28/05/2023 02:46

A lot of the symptoms sound like they match multiple sclerosis, has the doctor looked at that as a possibility?

This is what I thought!

2020Raquet · 28/05/2023 11:02

I had almost identical symptoms with iron deficiency anaemia (except the 10 hours of sleeping, because the constant itching meant sleep was almost impossible). Worth checking again? I thing the NICE guidance for iron levels really doesn’t work for some people, your body may need higher levels than the low in the guidelines.

IntoDeepBlueSea · 28/05/2023 11:05

If you didn't have health anxiety before, I bet you do now!! Omg!

Ok, so, generally, if it was cancer, something would be adrift in your main bloods panel, rbc, wbc, esr, crp, etc etc. That doesn't mean it isn't, but just in case you were starting to twitch!

Everything you mention is a real symptom of a real illness. Real rash, real bone/ muscle pain and weakness, night sweats. Didn't matter if you're 19 or 90, they need to revisit.

All of it can be explained by

  • hyperparathyroidism (test is PTH)
  • auto immune issues (1st test would be ANA)
  • vasculitis (something should've shown up already, but maybe not)
  • thyroid issues (full panel, NOT just TSH - T3, T4 etc etc

Anyone one of these could be the issue, there are plenty of endocrine and rheumatology conditions that may be involved, but the reality is the all of them could end up being very serious indeed.

I know that generally hoofbeats mean horses, not zebras, but that doesn't mean you stop checking.

monsteramunch · 28/05/2023 11:07

Is anything related to your cycle? Are you better / worse around your period? Are they regular?