Nerve issues or having a flare up?

[lisajane]

Hi posted this in general forum but was recommended to try in here im new to this site and would welcome some advice. I was diagnosed with crohns 2 years ago and been very lucky that I have felt well and not had any pain or issues till now.

Two month ago I had pins and needles in my right leg and doctor said was nerve issue I was given exercises and it went away. Ive now got pins and needles back in right leg, numbness and bottom of foot feels like I have something stuck to it, very odd feeling. My leg also feels heavy. Also my right side near ribs feels strained and heavy.

Went back to doctor who again said its nerve issue and has given me physio referral and getting bloods done to double check iron and B12. Last night my right side was really hurting and kept me awake its now constant dull ache and strange feeling in it.

Can anyone shed any light as to what maybe going on and could this infact be some sort of flare? My bowel movements seem ok although some mucous and I'm also not on any meds. I have been going to gym and I did think I had strained my right side but now not sure. Any thoughts would be appreciated, thanks for reading

 

[DEmberton]

You haven't had the B12 test before? That would be the obvious thing but other deficiencies can cause neuropathy too.

 

[lisajane]

Hi, I was taking iron tablets up until a month ago but it was giving me quite bad constipation. I had an appointment to check up on everything and my regular consultant was off so the stand in said my bloods were ok and I could stop taking the iron although those bloods were taken 4 month previous.

I think I've had B12 checked but that was when I was first diagnosed 2 years ago, nobody mentioned checking B12 till I got this issue. I'm apparently a complicated case because till now I have had virtually no symptoms, crohns was discovered by chance!

My right side near ribs feels a bit like I've fallen over and banged it really hard and top of my leg feels heavy if that makes sense?

 

[jmp62575]

LisaJane,

I have those symptoms all the time. During a flare or not. It is random where it is. I have felt it mainly in my feet/legs. I have done a lot of research and it appears these inflammatory diseases go hand in hand with arthritis, neuropathy, etc. I have not done anything about it (and I don't know if it is right or wrong). For me I can tolerate it and it's not constant. I would rather tolerate it than deal with a battery of tests and more drugs. If it gets worse I would probably get it checked out. Good Luck.

Joe

 

[leloupaccroupi]

I get the heaviness in my legs all the time, I figured more answers with diagnosis as well I don't have much time with work to just up and head to the doctor whenever I feel like and they haven't caused much other problems in the last 2 months (when I started having noticeable symptoms)

 

[lisajane]

Hi Joe, thanks for replying that puts my mind at rest that someone else has similar symptoms. Although not good that we have to suffer with these.

I know what you mean about not taking the drugs been so nice not to be on anything just not sure I can tolerate it. I'm sat with heat pad on my side which seems to be helping a bit although not sure what to do about the heavy leg feeling. I guess I will wait for blood work then go from there. I know my consultant mentioned steroids if i did have a flare but very reluctant to go back on them. I have been very stressed out for last few month so not sure if that's brought all this on.

 

[lisajane]

Hi leloupa, its really interesting you get heaviness in legs, I thought I was going mad! I'm lucky I can get time off for doctors appointments my work have been very understanding. If I find out any answers I will post on here.

 

[jmp62575]

Lisajane,

I am convinced stress is a huge contributor. The funny thing is people and forums say, 'do your best to control your stress' My response is, can you take my wife and two daughters until this flare passes If I get real nervous its IBS (if there is a flare its worse). If you are in that kind of pain you should absolutely get checked out. Good luck and let us know how you make out.

Joe

 

[lisajane]

Hi Joe, haha it is very hard to control stress isn't it? I basically have not known for last 4 months if I was going to be made redundant and been having lots of interviews so stress has been constant, luckily I just found out I have a job but now had all these symptoms appear so I'm hopeful I can relax and things will calm down. Thanks for responding fingers crossed I will get sorted.

 

[leloupaccroupi]

Joe and Lisa,

I know what you mean, I've considered leaving my career as a sous chef to find something a little less stressful because it's a hbuge contributor to like 90% of my symptoms. From pain to D to panic attacks and weird pains and pressure throughout my body (might be looking into fibro as well).

I think one of the things that's helped me feel 'normal' the most aside from being on here and chatting with you lovely people is trying to put it aside and just go through average day to day motions. Anxiety when you haven't been diagnosed or youre in a flare is tremendous I find.

I hope answers find you well, and soon

Keenan

 

[lisajane]

Hi Keenan,

That job does sound stressful, it is really annoying that stress seems to be contributing to all of these symptoms.

I feel a lot happier that ive posted and chatted to you guys I get really anxious thinking could it be something else or something worse! I try and talk to my partner but think because he doesn't understand he starts getting bit annoyed at me for going on and on about it all but when you don't have IBD think its very hard to understand.

Hope we all get some relief from symptoms, just be nice to feel normal for a while! Take care and I will post in the week when I maybe get some answers! xx

 

[leloupaccroupi]

If it ever ramps up your anxiety enough, listen to your body and bring it up with the Doc again, it may be something like fibromyalgia that they just need to rule other options out with testing

 

[txcountrychick]

Before I was diagnosed with Crohns I had major leg cramps that would wake me up at night. It ended up being a severe vitamin D diffency. I have been diagnosed with RLS since then and a nerve medication really helped that. I hope you find some relief!

 

[lisajane]

Hi txcountrychick,

Thanks for your reply. I had a heat pad on my side all night and that seemed to help me sleep although did wake a few times. Just had my blood tests done which scared me I thought I was getting checked for Vitamin D, B12 and Iron but when I looked at computer screen it had all sorts of tests including bone and thyroid. Then the lady said to ring in two days but they will ring me with anything urgent, so now im anxious my phone is going to ring with something bad!!

Keenan, thanks I do get very anxious think its the waiting and looking at my phone and seeing the doctors number pop up which I know means something is up.

It was mercaptopurine I was put on before and I received a very urgent call off my doctor to say stop taking that, turns out it really effected my liver! I'm actually thinking my side and leg may feel bit better today but then again that maybe Im getting used to it!

Everything crossed for some good results, not sure what they are testing on bone and thyroid thats what worried me as I've not seen them come up before!

 

[txcountrychick]

Hoping for good results! I had an appointment yesterday with a sleep dr and now have restless leg syndrome due to another medication. It does cause the pins and needle feeling but mainly the feeling that I have to move. I call them my wiggle legs

 

[lisajane]

Hi got results and everything is normal!! I am very confused as to what is causing these issues, next step is see a physiotherapist and I have an appointment with my consultant in two weeks so lets hope one of those can give me an idea on what is going on. Seems to be top of right thigh with most issues now feels really tight at the front its very odd.

 

[Anonymous77]

I have heard that Crohns can cause a deficiency in vitamin D, which in turn causes a calcium deficiency - calcium being a central element in nerve activity.

I had bad twitches and muscle spasms for a while and when B12 did nothing I took magnesium, Oral D3 spray and calcium tablets and slowly it seemed to mostly resolve.

However that might not be a catch all seen as i decided to bravely reintroduce oats to my diet and have been feeling decidedly twitchy since.

 

[Eridon2002]

I have heard that Crohns can cause a deficiency in vitamin D, which in turn causes a calcium deficiency - calcium being a central element in nerve activity.

I had bad twitches and muscle spasms for a while and when B12 did nothing I took magnesium, Oral D3 spray and calcium tablets and slowly it seemed to mostly resolve.

However that might not be a catch all seen as i decided to bravely reintroduce oats to my diet and have been feeling decidedly twitchy since.

You mentioned previously a gluten sensitivity. Sometimes oats can have gluten if they are processed with the same equipment/facility. Not sure if you are getting the gluten-free oats but you might want to give those a try if you aren't.