Crohns Disease and Peripheral Neuropathy

[farm296163]

Can anyone give me some more info on this. Currently have pain in upper arms and legs (on the inside), paraesthesia on the top of head with headache that comes and goes, crawling under skin (legs) at night, bad brain fog memory loss etc It's driving me crazy and I am searching everywhere to see if this is related to my Crohn's.
Have had these symptoms for 2 years but only diagnosed with Crohns late last year when I had a severe flare. Currently on pred (which is also doing my head in) and just started Humira which so far think I am doing ok. Can't think clearly or put 2 sentences together at the moment so this is making my anxiety higher than usual. Just wish the head would clear.
Any info would be fab xx

 

[Guest18]

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[DustyKat]

^^^^Bingo! Just what I was going to ask! :lol:

Where is your Crohn’s located farm and have you had your B12 levels done?

Dusty. xxx

 

[farm296163]

Haven't had B12 checked but going to doctor on wed so will ask for a blood test. Severe inflammation of bowel wall, colon, caecum to the bottom.

 

[gotumtum]

Haven't had B12 checked but going to doctor on wed so will ask for a blood test. Severe inflammation of bowel wall, colon, caecum to the bottom.

Might be worth getting your Magnesium checked too. My PN always makes itself known when my magnesium is low - even if you test within normal range it might be worth adding a bit more as I find I need more than the average person. Mine always gets worse when I have a migraine too - do you get migraines?

Duh - have just read your post properly! - if you have headaches you might have a migraine variant - I struggled for a few years until a very switched on neurologist put me on a migraine preventative (pizotifen) which started to help, and then someone else suggested magnesium - I felt sooo much better but it does take a while to 'build up' - helped the brain fog and sleep too. At times it got so bad that I could not talk.

So...Magnesium might be worth a try Just beware that there are lots of different types and some are almost impossible for people with normal digestion to absorb, also if you have too much it can upset your tummy. Some people prefer bathing with epsom salts or rubbing on magnesium gel.

Oh and I seem to get anxious when my Mg / B12 / Iron are low.

I also take something called 'Good Green Stuff'

It has lots of bits and pieces in it and just seems to top me up on those extras - I am assuming trace elements that I miss out on. I am in NZ but I see you are in Aussie so you might have seen it online/ health food store.

I get it in sachets and just use 1/2 at a time ( so 1/2 serving) in a banana berry frozen thick smoothie - gives me a boost

I am waiting for more to come in to my local shop as I can tell I am low in something. ( I am in no way associated with this product - just something I tried that helped.)

Best wishes and hope you feel better soon

 

[gotumtum]

Oh I also found that sleeping with a blanket or heavy covers helped me sleep as if seemed to minimise the weird sensations. I can'y count the number of times I though I had given myself a nasty graze and found nothing! During the day I wore long sleeves and long leg trousers of soft material, but no socks. Also breezes caused issues so maybe stay away from drafts?

Best of luck

 

[Outlaw]

Watching with interest.

I've been having similar side effects for a while now but hadn't gotten around to researching... Was just putting it down to side effects of humira that the prednisone had been masking ( been off the pred now for a few months after a few years of it). Headaches/migraines quite often usually on waking from pressure of my pillow! Constant aching in shoulders and upper arms. Itchiness on arms, chest. Fogginess in head & mind but not as bad as it's been previously.

 

[farm296163]

Big thanks for that reply, I was advised to take Magnesium when it all first started 2 years ago but for some reason have stopped taking it not sure why?? I have no idea why I do some things lol. I will def get some today.
Since diagnosed have been eating really well and having smoothies every morning (bullet) love love love them so I will also look at the good green stuff too. Hope to get some answers as this is driving me crazy.
I am def more anxious (cry one minute laugh the next) because I cant think clearly and the tingling and crawling is driving me crazy. I also get itchy in the legs.
I'm not under any stress work or family so sure its not caused by anxiety.
The headaches are mild which I can handle.
See what doc says tomorrow

 

[gotumtum]

Big thanks for that reply, I was advised to take Magnesium when it all first started 2 years ago but for some reason have stopped taking it not sure why?? I have no idea why I do some things lol. I will def get some today.
Since diagnosed have been eating really well and having smoothies every morning (bullet) love love love them so I will also look at the good green stuff too. Hope to get some answers as this is driving me crazy.
I am def more anxious (cry one minute laugh the next) because I cant think clearly and the tingling and crawling is driving me crazy. I also get itchy in the legs.
I'm not under any stress work or family so sure its not caused by anxiety.
The headaches are mild which I can handle.
See what doc says tomorrow

FYI my migraines are a bit odd - they do not necessarily include any headache at all, but can include facial numbness and pins and needles / difficulty talking etc

I can totally understand the emotional changability and the crawling feeling making you feel miserable and not yourself at all.

Is it a neurologist that you are going to see? If your crawling feeling is really bad, can you wrap yourself in eg a blanket really tightly for a minute or two for some relief?

Best of luck

 

[gotumtum]

Outlaw - if your magnesium, B12 are up to speed, it might be worth going to see a massage therapist and chiropractor?

I find that if I don't get straightened out regularly, I tend to tense up my shoulders and neck, which also tends to set off my migraines. I used to get an itchy back near my shoulder blades, and was told that when the muscles are really tight, it traps the nerves and that we interpret this as an itching type sensation.

Maybe get the chiropractor to check your jaw too - mine was really tight and was not helping the situation - I did not even realise that chiropractors looked at jaws?!

Best wishes

 

[If*]

Hello, there are implications of cd and pn. Many articles are on line now.
B12 can be a partial reason. Another possible reason can be dehydration. Our nerves need to be properly hydrated to function. Check it out ~ if you are dehydrated ask yourself is your pain worse??? - Again i have found coconut water to help, electrolyte replacement more so then just water. However it is important to seek medical attention.

Hope this might help someone

 

[farm296163]

My doctor has taken blood to check everything and I go for a CT Friday which is a good start. She mentioned and so did my chiropractic today that PN usually starts in the hands and feet (pins and needles) which I don't have. My symptoms can't be pinpointed to anything specific. She is going to talk to her neurologist also. I am very interested in the results, hopefully it can come up with something that I can treat and get on with life!

 

[nogutsnoglory]

I have neuropathy and it's not related to any deficiency. Doctors have no clue. Honestly I just have to try to ignore the burning, numbness and tingling and sometimes i can get my mind off it but it's challenging. Ice also helps to soothe overactive nerves.

 

[If*]

Hi NGNG, check out increased pn pain and dehydration. I was surprised at how much the pain increased with being dehydrated. It took me literally months/ to years to figure it out. It won't get rid of all the pain but it helped. I had asked what is making this worse for some time. There is info on it in a search and i was floored that it was so in my face but yet no one told me.
Cool water/cloths, even the cold areas in the sheets use to help but not anymore and anything hot causes intense pain.

Frustrating!

 

[nogutsnoglory]

Thanks I need to be on top of more fluids but generally my PN isn't pain bit incessant tingling and numbness.

 

[gotumtum]

Yeah, they were really puzzled with mine too - did not follow the two options of 'glove and stocking' or 'rising level' patterns. I had it is my face, tongue, hands, arms, back, feet and shins.

 

[farm296163]

I'm actually more worried about the head tingling and coordination, memory, brain fog etc problems. Results next Wednesday

 

[gotumtum]

I'm actually more worried about the head tingling and coordination, memory, brain fog etc problems. Results next Wednesday

My thoughts are with you. It is a horrible sensation to have - and no-one knows till they have experienced it. I count my lucky stars that mine is reduced.

Best of luck, and keep searching for an answer.

 

[M43]

Yes,

This is by far my worst symptom! I also get bouts of being freezing cold. The PN is a side effect of IBD for some

 

[george john]

just knowing all the stuff I feel isn't just with me. thank you

 

[InstantCoffee]

I'd look real hard at vitamin B6.

It's the primary resource used in a lot of the enzymatic reactions that stimulate and produce our neurotransmitters.

RDVs are low and they warn of low numbers for toxicity, but that's for healthy individuals. It can be taken therapeutically up to 300 mg a day for a year before seeing adverse effects.

Deficiency and toxicity both result in PN.

I would suggest a GOOD multi vitamin to cover your bases, my prefereance is Solgar formula VM75

Take 3-4 a day.

 

[annawato]

i've had peripheral neuropathy for years but it has become worse in the last two years so much so that I didn't even realise I had fractures in my foot. I cant wear thongs (flipflops) anymore as I haven't enough sensation to keep them on. I find it worse at night and can definitely identify iwth glove/stocking feeling. Plus the rest of my legs ache continuously. Actually everywhere aches. My gastro said Flagyl can cause PN but that when stopped the nerves would regenerate. Since they havent I expect it is something else and Dehydration makes a lot of sense - I have an over active ileostomy.
Thanks for info from everyone above, and if anyone else has suggestions that would be great.

 

[gotumtum]

Just a note for those looking through the thread. - Since my previous posts I have had intermittent Thiamine (B1) Deficiency. Probably due to multiple causes - a lot of loss through diarrhoea, less intake because of being gluten free, less absorbtion as it is harder to absorb when you are really low in it, and possibly genetic factors. NB I do not drink alcohol, tea or coffee at all - (or eat cassava) which are the main causes of deficiency. Definitely worth looking into for those who are on a journey of discovery.