New here-16yrs with CD-looking for muscle pain answers

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Joined
Jun 21, 2010
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Hi everyone,
After being diagnosed 16 years ago with CD at age 12, I've finally joined the forum!
Why? I'm really looking for answers to constant muscle pain and general all over irritation in the joints and muscles for over 5 years now, but has really been hanging around for as long as the Crohns.

This is my story, I'll try be brief and to the point...

11 years old, started getting stomach pains and vomiting weekly and wasn't able to hold down much food at any meal. 6-8 months went by, skinny as a rake, tests were inconclusive.
One day, after eating some popcorn the night before, I woke I with excruciating abdominal pain, went straight to my GP and on to hospital for emergency surgery same day. They removed my appendix, 8 inches of intestine and an abscess the size of a grapefruit. Was diagnosed with CD some weeks later, all up 2 months in hospital. Was a scary time for a 12 year old and their fam.

Middle teenage years were pretty good on the Crohns front. No meds and only slight evidence of crohns once or twice a year, until I left high school and started having the abdominal pain again and to keep it brief, had similar surgery again aged 18, with an even larger abscess removed and now a nice foot-long vertical scar on the belly to boast.

Was on pred and the usual others for a time after that until I decided I didn't want to live with drugs anymore and started down the alternative health/treatment path. Left my GI as his only advise on diet was if your too skinny you should eat more Mac Donalds. Good one!

I'm now 28 and 5 years married to an incredibly caring and supportive wife. Haven't seen the hospital since 18 but it hasn't been an easy road. I've tried many sorts of diets and holistic type approaches and experienced the most success by following "the guts and glory program" from "Restoring your digestive health" by Jordan Rubin and Joseph Brasco, and following the direction of a great holistic GP I found, and keeping up to speed with people like Dr Mercola.

My real struggle in later years has been the muscle/joint pain and body fatigue. I feel like my body is just hyper irritable. If I'm in one position for five minutes I get aches in whatever place is most under pressure. I cannot lie on either side without my hips reacting and radiating pain. I can't lie on my back or sit down without getting great pain in my butt and legs (parts that are touching the chair). So I have developed a problem in my lower back (pain and stiffness) I think because of sleeping on my stomach so much as I have no other choice. I am in pain all over now trying to get this typed out. I also feel like I have brain fog 99% of the time. I also get a swelling and throbbing in a random finger every week or so that wakes me up at night.

I currently take krill oil, probiotics, digestive enzymes and sometimes B12 and Vit D spray supplements. I am now awaiting my first trial of low dose naltrexone (LDN) and going to start on resveratrol supps. Am really hoping and praying this will allow me to be able to get back to my profession of copywriting and also allow me to sit down and write songs as is my passion.

Thanks so much for reading! Any recommendations on natural remedies or insight are welcome!
 
One more thing... it's strange I think that I have never experience the textbook CD symptoms of needing the constantly run to the bathroom. Only abdominal pain and vomiting. Is that common?
 
hi Cleaves & welcome to the forum :)

my first thought on reading your intro was that maybe it's time now to get back in touch with the hospital? if you're in such pain constantly, i would recommend that you should be under the care of at least a gastro consultant, who might refer you onto someone else who can help with this particular issue more.

it might also be beneficial to have some tests done, which a GI could easily organise.

in the short term - the best painkiller i've found for aches in my joints is something called Syndol. i don't know if it's available where you are, but it's worth looking up to see if it is, or if anything with the same ingredients is.
 
Hi Cleaves and :welcome:

I have to agree with Ding, after reading your post it sounds like it may be an idea to have a thorough check up with a GI and try to establish where your at. I have no issue with you going down the alternative path but to be honest it just doesn't sound like it's working at present.

One more thing... it's strange I think that I have never experience the textbook CD symptoms of needing the constantly run to the bathroom. Only abdominal pain and vomiting. Is that common?

Roo never had diarrhoea as a symptom of her CD, like you it was only ever abdominal pain and vomiting and there are others on here the same, so you're not alone with that one!

Glad you found us and keep us posted on how things are going.

Take care,
Dusty
 
Yup

Joint and muslce pain has been common for me. Have had Crohns now for 30 yrs. 4 major ops, bunch of smaller ones. I push my body pretty hard, surfing, regular gym etc and this doesnt help but I get the pain regardless. Syndol works well but I also use Tai Chai and other excercise- Hope that helps
 
hi Cleaves & welcome to the forum :)

my first thought on reading your intro was that maybe it's time now to get back in touch with the hospital? if you're in such pain constantly, i would recommend that you should be under the care of at least a gastro consultant, who might refer you onto someone else who can help with this particular issue more.

it might also be beneficial to have some tests done, which a GI could easily organise.

Thanks for the advice dingbat, dustykat and colphin!

I failed to mention I went back to the Gastro a few years ago to get some answers on the muscle pain. All he could come up with was that it was "phantom" pain, which basically means it's mysterious and maybe the brain is making it up in place of the abdominal pain (back then the pain was centred to the front of the hip near where I've had the bowel trouble) and it was untreatable. That pain is still there and feels very much muscular (iliacus or psoas I think) as when i stretch it out it soothes slightly.

I see your point though, I will consider finding another Gastro or maybe even a rheumatoidologist. I should have done that by now. I guess I have become very skeptical of conventional medicine over the years for the reasons I've said previous. It seems bent on just pushing drugs that just target symptoms and usually put the rest of your body out of whack. They also don't seem to have any respect for your own findings after living with the disease for most of your life.

I'm really interested to see what happens once I start on LDN in a week or so. I have done my own research into it and when I brought it to my GP who has been with me for many years and has a well-rounded "holistic" approach, she was happy to prescribe.

I'll let you know how I go! Thanks again ;)
 
Hey colphin, Brissy's my hometown! I'm currently living/working in Vietnam but will be home for good in Sept. Enjoying the cold?
 
Hey Cleaves, welcome to the forum!! Is your trusted GP in 'nam or Australia? I'm no world traveller, just curious about the level of care you have access to there in Hanoi?
 
I have muscle pain too. I realized after stopping Prednisone after my first major flare. I feel better now, and I think it is because I'm almost in remission. I still have the fatigue though, and need a lot more sleep than I ever used to.
 
Hey Cleaves, welcome to the forum!! Is your trusted GP in 'nam or Australia? I'm no world traveller, just curious about the level of care you have access to there in Hanoi?

MY GP's in Aus and we consult over email/phone. I am not seeing anyone in Nam and I haven't attempted to find out what's available. Am gonna feel better about things once I'm home I think, probably less stress too being in familiar surroundings. Cheers!
 
Not so Cold

Cleaves, good to hear from another Brisso. Worked all over the place myself. Winter not so bad, went to the Maldives surfing where it was warm:D
Vietnam would be great!
Colphin
 
Not so much advice I can give as I just started treatment myself. I am keeping a food diary and have read several books on keeping the gut happy! By far the most helpful has been "eating right for a bad gut" by dr james scala. It has a lot of helpful information in it. I also picked up a recipe book from the bookstore to try. I am also wanting to try alternative ways and don't plan on being on meds forever! Good luck.
 
I think the LDN may help you with your joint pain, but it may get worse in the short run from it. I am not sure how it works for Arthritis like conditions, although it is used for Arthritis. It really depends on if there is a pathogen involved, and it is likely there is.

LDN helps the immune system work closer to normal, but once you have an entrenched pathogen, it may be difficult to get rid of it. They tend to create their own favorable environment.

I will use natural, conventional, and most any other treatment that makes sense for the condition I am dealing with. If the LDN does the trick, you will be set. If it does not, I have a couple other things you could try.

Miracle Mineral Solution is one of them. It has cleared up many unspecified pathogen related problems in lots of people. Myself included. This is not natural, but an selective oxidizing chemical that negatively affects anaerobic bacteria. These are the bacteria that generally do not belong in the body.

Another product I have used, mostly for lung infections of an unknown or known origin is the Nutramedix product called Cumanda. It is a natural antibiotic and works well for fungal infections, and some bacterial infections.

Most, but not all of these unknown conditions do have a pathogen involved, and removing it from the body can make a huge difference. It is a matter of finding a way to kill it off in as safe a manner as possible.

That is my unprofessional opinion on the subject.

Good Luck, and let us know how the LDN works for you.

Dan
 
Wow, what can I say. You guys are so helpful and supportive. I should have joined years ago!
I will check out "eating right for a bad gut", thanks xoxava.

Dan - thanks so much for info and insight. I had seen your treatment list on your posts before and thought you'd be an interesting guy to talk to. :) And yes I am trying to stay open minded about treatments if they work and respect the body as a whole.

Got news today that LDN is banned in Vietnam so that's a real set back.

The pathogen thing is interesting. I had this pain even when my CRP level was normal a couple of years ago, so I guess it sounds less like arthritis and more like a pathogen at work (in my mind at least). Agreed? I have not heard of Miracle Mineral Solution before so I will do some research.

I know I really should get to a doctor, but that's not too easy in Vietnam. Not easy either in Aus to find a Gastro who can be open minded about treatments. However, need to seriously think about moving back home earlier than planned.

Thanks again ;)
 
My real struggle in later years has been the muscle/joint pain and body fatigue. I feel like my body is just hyper irritable. If I'm in one position for five minutes I get aches in whatever place is most under pressure. I cannot lie on either side without my hips reacting and radiating pain. I can't lie on my back or sit down without getting great pain in my butt and legs (parts that are touching the chair). So I have developed a problem in my lower back (pain and stiffness) I think because of sleeping on my stomach so much as I have no other choice. I am in pain all over now trying to get this typed out. I also feel like I have brain fog 99% of the time. I also get a swelling and throbbing in a random finger every week or so that wakes me up at night.

OMG! I could've wrote this! It describes me to a T! right down to the finger! I have found it easier to stand and walk around, sitting cripples me!
I've had loads of checks, blood work etc, all normal. The gastros have told me it's due to withdrawal of Pred! I really don't know? They've said it's not arthritis or osteo.
I use Syndol too, it's a muscle relaxant and helps me to sleep, I use Codeine Phosphate too when the going gets tough!
Read my thread 'I feel weird' about my fog!
Anyway forgot to say, I was so distracted!
Hiya and welcome!
lotsa luv
Joan xxx
 
OMG! I could've wrote this! It describes me to a T! right down to the finger! I have found it easier to stand and walk around, sitting cripples me!
I've had loads of checks, blood work etc, all normal. The gastros have told me it's due to withdrawal of Pred! I really don't know? They've said it's not arthritis or osteo.
I use Syndol too, it's a muscle relaxant and helps me to sleep, I use Codeine Phosphate too when the going gets tough!
Read my thread 'I feel weird' about my fog!
Anyway forgot to say, I was so distracted!
Hiya and welcome!
lotsa luv
Joan xxx

My goodness Joan, that's kinda cool (and definitely not cool) in a totally strange way that we share symptoms (only on a disease forum right?). And if you're not crazy then I 'm not crazy either right??

Easier to stand and walk around, absolutely.

Haven't read the post you referred to yet but that's my next stop. I feel like I've had brain fog for 5 or so years!! I hate it! I takes a lot of energy and concentration to have a conversation with someone and I get anxious about making simple enquiries especially in person as I don't know whether I'm gonna to remember how to say it right. Argh!

And I hate to say but I've been off prednisone for 6 years, so when do they think you'll be "withdrawn"?

Really good to know of someone who is on a similar road, we can trade notes!

Thanks Joan,
Ben
 
Hiya Ben

Oh shit! you've been off 6 years?! Well there's no bloody hope for me then! I'll have to get a zimmer frame!
I was so upset last week, kept making mistakes in work, I simply can not string 2 words together, if feels like me teeth are stuck together!! lol
I started frettin that I had early onset dementia, honest! My mum died of Alzheimers!
I don't think that now, I've just got a steroid brain, a weird one, a mental one, and wizzin me tits off!
ha ha
keep in touch Ben, to compare various aches & pains! Bet I beat ya, hands down!
xxxx
 
ITs great to hear so many good ideas on dealing with the joint and muscle pain. Whats even better in a rather odd way is to know its not uncommon ( sorry !)
I have kind of reconclied over the years to just having a bunch of pain at nights in particular. As I mentioned though I found that the Tai Chai and Yoga work pretty well.
Colphin

" I used to keep an open mind but my brains kept falling out" - Anon
 

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