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Mystery illness... Anyone had something similar ?

11 replies

ThatWiseRedDeer · 27/10/2024 09:37

Im from the UK but I live in Norway now. Since giving birth to my third child 8 months ago I've been experiencing pain. It started as pain just in and around the back of my ears. And has now spread to my arms and hands. Sometimes I get stabbing pain in my feet too and I've also had pain in my stomach and leg. However, that comes and goes, the pain I have in my ears, hands and arms is every day and pretty much constant pain now. The doctors can't seem to figure it out. I've had blood tests and they've checked my thyroid,vitamin d and B12 which all seem fine or within what they call normal. The only thing that has been raised is my alp levels, my calcium levels were also raised but have gone down again now. In my last results my glucose levels were also above normal. I'm now waiting for them to check the bone specific alp levels, which they said they won't do before checking my alp levels again...which I think is ridiculous because this has been going on for months now. Most days I feel either completely drained or, I will suddenly feel tired after not doing much. I have some days with energy in between but this is really getting me down now...I've noticed that I've had more heartburn recently too, almost every night... I just want to feel myself again and be able to do things or more than what I can now without it making me feel absolutely exhausted the next day. I guess I was wondering if anyone has experienced something similar

OP posts:
GG1986 · 27/10/2024 12:53

Are you breastfeeding? Might be a coincidence but I had the worst joint pain all over body everyday for the first 6 months, as soon as I stopped breastfeeding it was gone.

ThatWiseRedDeer · 27/10/2024 16:41

@GG1986 I am breastfeeding, although a lot less now and mine has gotten progressively worse but it could be this... Did yours get worse or was it constant? Mine started out as weird pain behind my ears and in my ears and has now progressed to pretty much all over my body. Sometimes it hurts to the touch also. For example my husband has accidentally nudged me a few times and it was very painful for me even though he barely touched me really. I have a mouth sore that doesn't seem to go away also...

OP posts:
GG1986 · 27/10/2024 16:56

I think my pain was just the same and didn't get worse, but it was constant. It weirdly stopped as soon as I stopped feeding. I would recommend speaking to a dr, get your vitamin levels checked, folate, b12, vit d and thyroid checks, some people get thyroid issues after giving birth and that can cause body pain/achy joints as can vitamin deficiencies.

Konfuzzled · 27/10/2024 17:03

Your mentioning of mouth ulcer made me wonder about behcets disease. Have a look at the symptoms and see if anything fits? It's a rare autoimmune disease.

www.nhs.uk/conditions/behcets-disease/

incognito50me · 27/10/2024 19:26

GG1986 · 27/10/2024 12:53

Are you breastfeeding? Might be a coincidence but I had the worst joint pain all over body everyday for the first 6 months, as soon as I stopped breastfeeding it was gone.

I also did, but mine lasted for about three weeks (I continued breastfeeding) and it went away. It was quite terrible while it lasted.
@ThatWiseRedDeer , is your pain in your joints or more stabbing?

ThatWiseRedDeer · 27/10/2024 19:35

@incognito50me Sorry you experienced that. I'm not sure to be honest I think it's in my muscles or bones to be honest it's all round the back of my ears and all down my arms and in my hands and I've had pain in other areas of my body too. I wouldn't describe that pain as stabbing but I have had some stabbing pains in my feet. For example, the whole of today I've had more of aching pains, around the back of my ears, all down my arms and in my back and I've just felt really ill and tired, so I've done the bare minimum today. It honestly feels like I'm dying sometimes when it's bad, I get heartburn every night too😞

OP posts:
ThatWiseRedDeer · 27/10/2024 19:40

@GG1986 That sounds horrible, good that it went away though! I honestly don't know what it is, so it could well be this 🤷 I've had all vitamin levels checked and thyroid, all seemed fine... The only levels that were raised were my alp and glucose... So now they said they will check the bone specific alp 🫤

OP posts:
ThatWiseRedDeer · 27/10/2024 19:42

@Konfuzzled thanks for your reply. It could be this too but I only have the symptoms of pain and the one mouth sore, so not sure....

OP posts:
RJB73 · 27/10/2024 19:45

My sister had similar issues and after many tests and much faffing about by the NHS it was found that she had a parathyroid tumor (they are almost always benign).

5475878237NC · 27/10/2024 19:50

I had this for a few months but it went away and I carried on breastfeeding for another two years.

Pregnancy can lead to rheumatoid arthritis I think.

Konfuzzled · 27/10/2024 19:51

ThatWiseRedDeer · 27/10/2024 19:42

@Konfuzzled thanks for your reply. It could be this too but I only have the symptoms of pain and the one mouth sore, so not sure....

Tiredness, heartburn and skin being painful to the touch are also symptoms.

https://www.nhs.uk/conditions/behcets-disease/symptoms/

nhs.uk

Behçet's disease - Symptoms

Read about the symptoms of Behçet's disease. It can cause a wide range of symptoms, but it's rare for someone with the condition to have all of them at once.

https://www.nhs.uk/conditions/behcets-disease/symptoms

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