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Can anyone recognize these symptoms?

(21 Posts)
danishkids Mon 15-Jul-19 16:19:03

Anyone on here, have similar symptoms? I’m just at the beginning of trying to find a diagnosis.

So I have had/have the following symptoms for at least 6 months.

Dull pain in my legs, but to the point that I feel like they will buckle under me if I stand too long/ especially closer to the end of the day

Extreme pain under my feet. (The always feel like I’ve been walking around all day and ache. Causing me to avoid walking if possible.

The muscles in my calf also go rock solid (a bit like cramps) for up to a few hours at a time.

My knees hurt.

My hands ache. Pretty much all the time and feel
Weak. I also drop things more, sometimes I’m unaware that I drop things till after they hit the floor:

Shooting pain in my arms, wrist, back and neck

Pain in the middle of my back.

And overwhelming tiredness, where I feel exhausted most of the time. (That’s the worst thing)

I have had a few eye infections (unlike me)

And sorry if it’s too much info. I also sometimes pee a little bit in my underwear

I have been diagnosed with the beginning of osteoarthritis in my back. And have gutter psoriasis (I don’t have a flare up right now.

I have just been x-rayed for psoriatic arthritis. But other words like me and fibromyalgia have been thrown around.

Do any of you recognize the symptoms, I am a mum to small kids so want to do my best to get my energy and body back.

Thanks if anyone managed to read all that. smile

danishkids Mon 15-Jul-19 16:19:31

Other word like ms *

danishkids Mon 15-Jul-19 18:27:45

And one more thing. I get pins and needle much more frequently in my feet and lower legs and occasionally in my hands

CitadelsofScience Tue 16-Jul-19 08:48:38

It's likely to be PsA so don't take a fibro diagnosis as a given.

I have PsA and a lot of your symptoms I can directly relate too.

There are some pretty shitty rheumatologists out there who have no idea of the mechanism of PsA and think it works exactly like Ra, it does and it doesn't.

Have you had bloods? You need vit D and B12 testing and your thyroid. All of those could explain the muscle pain and tingling.

danishkids Tue 16-Jul-19 17:47:20

Hey. Thank you so much for your reply! I’m really grateful.

I have had my blood work done and my thyroid and but d and b12 were good. As well as my iron.

Do you have any other symptoms that I haven’t mentioned?

I really want to get to the bottom of it so I can treat what ever is going on smile

Tiggles Wed 17-Jul-19 00:32:42

I was about to suggest psoriatic arthritis which my Dh has and then saw you were being tested. Your symptoms are very similar to his.

baldisbeautiful Wed 17-Jul-19 14:42:31

I had all these symptoms and have recently been diagnosed with Addison's disease. Worth a mention to your go as it's quite rare. Adrenal failure. I also have hypothyroidism and vitiligo which often go hand in hand with addisons. Good luck

mindutopia Wed 24-Jul-19 11:29:38

OP, I could have almost written your post myself. My symptoms started in January, so it's been 7 months now, though I didn't feel quite right for about 2 months before that (after a tummy bug, interestingly).

It started with knee pain (not unusual as I have had a knee injury and 2 operations in my teens/early 20s, but other knee had always been fine - I'm 38 now and really haven't had problems with my 'bad' knee for nearly 20 years).

Then about a month or two after that, I woke up in the middle of the night with a pain in my toe and swelling. I could barely walk by morning. I had to sit at work with a bag of peas on it. I thought I'd broken it, but had no memory of doing anything. It became a running joke as I'd had a few glasses of prosecco that weekend (and by a few, I mean quite a few) and even my daughter joked that I must have gotten drunk and fallen down and broken my toe. (I wasn't drunk! And I definitely didn't fall down and break anything, but it made me think I was crazy and couldn't remember some catastrophic injury I'd caused myself). I could barely walk for about 4 days and then struggled for about the next month. Toe was swollen and I couldn't wear my usual shoes for several weeks.

Then both feet/all toes started to ache along with knees. Getting up in the morning and getting down the stairs was agony. Sitting for long periods became hard. I would have to work standing up as it was just really painful if I stayed sitting. I still thought I must have somehow injured myself? Maybe because I'd recently gone back to work from mat leave and was more sedentary not chasing after a toddler, that my joints were just getting old and achy.

Then one day on the train to work, I literally watched the middle joint of one of my fingers swell up and become so painful I couldn't move it. It happened literally before my eyes in about 5 minutes. I couldn't bend that finger for probably 5 days.

Then the pain became in my feet, knees, hands, also have some costochondroitis like sterum pain. It's constant, every day, symmetrical. Some days are better then others. Some days are awful.

I also had bone breaking levels of fatigue. I've always been a morning person. Always survived on little sleep. I literally couldn't get out of bed some days. I couldn't walk up the stairs some days, I was literally so exhausted.

And oddly, recurring conjunctivities. My eyes regularly get very blood shot and I wake up with them crusted over. It's not all the time. But once a month maybe, I had a bad bout of it.

I do have some bladder incontinence, but I think that's due to a weak pelvic floor after having 2 dc. It certainly pre-dates this by several years, so I don't necessarily think it's related.

I've had all the blood tests and had x-rays. Everything came back normal, except my vitamin d was low - low, not deficient. I have been taking high dose vitamin d for the past 2 months (8000 IUs a day). The vitamin d has helped with the fatigue actually. I feel much less exhausted. Youngest dc has also been sleeping better, so that may have something to do with it too. Thyroid fine, CRP, ESR both fine. Iron levels are great.

Psoriatic arthritis has been mentioned as a possibility as well (I meet all the PEST criteria anyway). But GP was a bit like, well, just see how you feel. I don't feel in any less pain, even if the fatigue is slightly better. So I'm going back to see the GP in the next month or so (no appts until end of August though sad ) to push for a referral to a rheumatologist. There has to be an explanation for this.

Interestingly, I did have several years of bad fatigue and pain in my hands/wrists (not in feet or knees or elsewhere) in my early 20s. Did all the same investigations, nothing came up. It was called fibromyalgia. I took a tricyclic antidepressant and gabapentin for about 3 years. Tricyclic did seem to help with my sleep and fatigue. Eventually I felt better and got fed up of the meds and stopped them. I've been fine ever since until now. I'm sure whatever it is is connected to that, but I'm not convinced it's fibromyalgia.

danishkids Mon 29-Jul-19 21:14:52

Wow, thanks for your replies.
@baldisbeautiful my younger brother had/has addisons when he was young(apparently that’s very rare in kids) maybe I should read into that and see if I have the symptoms?

RockinHippy Mon 29-Jul-19 22:05:19

I recognise your symptoms & I was originally diagnosed with fibromyalgia by a lazy assed doctor & then M.E. When I kept pushing for more tests as I didn't believe they were right.

They weren't right, I have Pernicious Anaemia & hyper mobile Ehlers danlos which seems to be linked. I have POTs as a symptom of both.

I also had vitamin D deficiency which sound like some of your leg symptoms & others. Thiamine which when fixed with a high daily dose, stopped what I'd been told was osteoarthritis in my hand. Went completely in under a week. B12 deficiency is nasty & causes the foot & leg pain & more All 3 have pain & exhaustion's symptoms.

I can't process B12 due to genes, so need injections & they help a lot.

I also had a common gut infection "Heliobacter Pylori" which caused gastritis, the gastritis cause problems absorbing nutrition properly, so I was struggling with a lot of vitamins etc despite a very healthy diet

I'd suggest a blood or I think breath test for heliobacter pylori (stool test not always accurate). Blood tests for B12, D, & thiamine. & once these are out of the way & you have results

Look at the vitamin D council fir good info on that as it's a bit more complicated than just taking any old supplement, though buy elsewhere.

Do your research on B12 deficiencies as it's complicated & doctors too often miss it or treat incorrectly - B12 is the big one that causes a lot of problems & a lot of the symptoms you mention & more. If you took ill after giving birth,that's even more of a clue. I was told mine was fine for years & it had been very low when I first took ill, but I didn't know back then tests could be wrong so took the old GPs word for it.

If you are very flexible, look up the "Beighton Score" if you can do those moves, then look into hyper mobile Ehlers danlos

Also look at the POTsUK website, it's a symptom, but a condition in its own right too.

RockinHippy Mon 29-Jul-19 22:08:45

Oh & heredity Pernicious Anaemia is an autoimmune disease. So it's linked to other AI conditions,in that you can have that one, & family have others, or have the same,

Hope that lot makes sense. Weather giving me migraine 🤪

tryingtobebetterallthetime Thu 01-Aug-19 23:43:20

Your description of symptoms made me wonder about lupus. A coworker has it and she had many of your symptoms.

Aurea Fri 02-Aug-19 00:02:22

Have you been bitten by a tick.? Lyme disease or similar coinfecttions like Bartonella? I hope you see an improvement soon.

Alislia17 Fri 02-Aug-19 03:56:47

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

danishkids Thu 05-Sep-19 10:25:07

Im starting to think
More that it could be ms. My xrays came back clear from psoriatic arthritis.

But over the last few months, I’ve become much weaker in my arms and legs and hands, just pouring a bottle of water makes me feel uncomfortable, like I can hold it, or I’ll drop or spill.

I have shooting pains through most of my body, and the last month I’ve started to mix my words up when I talk, either forgetting the word, or saying them In The wrong order.

I’m sure something is wrong, but I’m no doctor, it’s so frustrating. I have a go appointment on Friday to discuss where we go from here. I guess I hoped it was pa so I didn’t have to figure it out.

Tuesday40 Sat 07-Sep-19 07:43:34

Have you had an MRI scan op? Lots of your symptoms do correlate to MS, although lots of other health conditions too. An MRI could rule out MS for you.

domton Tue 10-Sep-19 10:47:25

Lupus is a possibility. Look up the 12 diagnostic criteria.

I'd the joint pain symmetrical? Is the fatigue now like someone switching off a power source then being sleepy?

Ana blood test would show autoimmune likely, then further tests for lupus or similar if that's positive. X

baldisbeautiful Tue 10-Sep-19 22:32:25

OP did you make any progress with a diagnosis ? Hope you're feeling better x

danishkids Sat 14-Sep-19 20:49:26

I will see a neurologist at the start of October, then I guess I’ll be offered a scanning. I’ll keep you updated. Thanks for your help

weegiemum Mon 16-Sep-19 17:01:07

I just saw this.

I have a neuro condition that's rare, but the symptoms of so many neuro conditions are the same. I have monthly IV treatment in hospital and meet people with so many different conditions, including my own and lots of MS patients. Once you have a diagnosis there are lots of treatments available.

If you get s decent neurologist expect appointments for scans (I had CT, MRI and ultrasound), lumbar puncture (nothing like as scary as you'll tell yourself it is) and possible nerve conduction tests. And neurologists sure like to take blood!

I hope you get your answers and get started on a treatment that works for you. Good luck at your appointment x

Laterthanyouthink Mon 09-Dec-19 07:19:29

How are you doing now @danishkids ?

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