Confused and desperate

naceshealth

Hi all,

I have just found this site in my desperate attemps to find out what is wrong with me, the Doctors have been trying for years but I always seem to end up with either some new pills or a slight change in some of the many I have been taking for what seems forever.

To anyone who may be interested or have comparable symptoms here's a brief outline of my problems!

I have had Crohns Disease for nearly 30 years, in which time I have had 4 operations and resections of various amounts and parts of my digestive system.
(I have however still managed to avoid a colostomy bag)

over the last few years I have had growing problems with Arthritis or at least a form of arthritis associated with Crohns disease (or so they tell me) this got worse and worse until about 3 years ago when I started getting large lumps appearing in & on my hands fingers wrists and feet, they would come up all of a sudden starting with w small sore area and growing to large disfiguring lumps in hours, sometimes minutes, they would last anything from a day to a week and disappear again, it could be one at a time or 2 or 3 at a time all very random, to get to the point I was sent to a London Professor who is known to be the leading expert in Crohns & Crohns related problems, i.e. the associated artritis. his decision was to remove another section of small intestine which he considered was driving the arthritis like symptoms.

Low and behold I have not had any swelling since, however I do still get sore & stiff joints as well as burning, tingling and stabbing pains all over, the worst affected areas being my feet, legs, hands & forearms but does affect neck shoulders hips and just about any part of the body at varying times, the latest diagnosis has been named (at last something has a name) as "Fibromyalgia" like Crohns disease this is a disease that has little known about it, in as much as . they are not sure what causes it or how to treat it.

I have been desperately searching and have found that it could be that I have to much Oxalate for my digestive system to handle causing these Oxelates to get into my muscles, brain, joints, and just about everywhere? I have also found an article written by Dr Clair Morrison, who had the disease herself and found total relief by eating a Low Oxelate diet.

I am definitely going to try this diet if only I could find out what foods have how much oxelate, which seems to be a huge challenge as so far I have found various low oxelate diets but they all seem to contradict each other?

I would be so grateful if there is anyone out there that can help or has similar symptoms or experiences that I could compare notes with, I have been unable to work for nearly 18 months now which is just about driving me mad, let alone the pain I have to deal with in varying amounts but is with me 24-7, to say the least, some days it really gets really gets me down.

Many Thanks,

Paul.

P.S. If anyone is interested in the article by Dr Morrison, it can be found here:
http://www.dailymail.co.uk/health/article-2187890/Ditch-healthy-berries-beat-muscle-pain-the-eating-plan-helped-cure-aches-pains.html

dreamdaisy

Hello, it's nice to meet you and I hope we can help with information and support. There are quite a few members on here who have inflammatory arthritis plus Crohn's, IBS is another plaint too. Were you told that this was the arthritis that was affecting you? There are many forms of inflammatory arthritis, there are meds one can take that damp down the immune system, these are designed to stop the body attacking itself (which is the basis for all auto-immune arthritis). Fibromyalgia means muscle pain (rather than joint pain) and there is still some debate as to whether it exists as an individual condition, some docs say yes and others dismiss it. We are all at the mercy of a doctor's opinion, I swear you could show three rheumatologists the same set of results and get three different interpretations. Your 'lumps' however - well, I dunno about them but I am not a doc.

I am lucky in that I only have psoriatic (an auto-immune type) and osteo arthritis (which was caused by the joint damage from the PsA). I have tried altering my diet over the years and found it makes no difference whatsoever, but for others it does. I know that acidic foods worsen everything so I've dropped my belovéd pickles etc but at the moment the strawberries are far too tempting.

I can't think of anything else to say (I'm having a rough day myself) but if anything even vaguely resmbling a useful thought comes to mind I'll come back. I wish you well. DD

stickywicket

Hello and welcome from me, too. Mine is RA and I've no personal experience of Crohns other than once being in the next hospital bed to a lady with both. I don't envy you but your consultant sounds to know what he's doing if the resection helped.

I've never heard of Oxylates let alone a low oxelate diet so I googled it. I'm still not much the wiser :roll: However, you say you've found that several such diets contradict each other. I came across this website http://lowoxalate.info/recipes.html. Is that any help? At a glance, it looks as if you can still have a varied, balanced diet, just not as varied as most.

Are you on any meds for the arthritis? I don't have fibromyalgia so can't help on that front except to say that the lumps and bumps thing sounds more like an inflammatory arthritis than fibro and, if you have the former, I'd have thought you really needed to be on some meds to keep it at bay.

DebbieT

Hi & welcome to the forum,

I'm sorry uve had such an awful time

I can't really offer you much advice as I know so little about Crohns & if ure Rheumatologist is struggling to diagnose you I know I'll be useless, sorry!! I can honestly say I have never, ever heard of a FM patient with the lumps & bumps you've described tho, are they sure that isn't arthritis?? It sounds far more likely than a fibromyalgia symptom.

Like DD I have Psoriatic Arthritis, Psoriasis & Osteoarthritis, I also have Fibromyalgia as well tho. Many FM patients have other health issues & bowel problems do seem to be quite common. From my own experience tho I've only spoken/met ibs suffers. It's hard to know which came first in many people ... The FM or other disease.

FM is often connected with trauma, emotional or physical, so ure struggle with Crohns could fit with that. Mine has been years of constant high level stress.

Lots of research has been coming to light recently suggesting it is based in our immune systems as well as being Neurological, Some of the newest research is indicating a grouping of nerves in our palms as the initial trigger to FM & it seems from there it starts to change our pain receptors & how our brains receive these signals, we basically have our receptors set to receive pain only & our brains can't turn it off so we end up feeling pain 24/7!! It is rarely seen as 'made up' or 'all in our heads' now. Too much evidence is pointing away from those outdated views, thankfully I'm very lucky that I've never met medical professionals with that attitude.

Vitamin levels should be checked, especially B12 & D3. Ure Rheumy will know all of the ones that need testing. Also having a viral panel done is a good idea. Lymes disease, glandular fever etc can cause the bone aching fatigue & joint pain.

As much as FM is supposed to affect soft tissue is does seem that many patients do have joint pain too. It can often be traced to arthritis, carpal tunnel etc but not all!! This is why FM is such a difficult thing to have & treat, it doesn't follow the same pattern in everyone :?

Gabapentin & Pregabalin along with Amitriptyline/Nortriptyline are probably the most commonly used medications to treat FM.

As for diet, I'm yet to find anyone that has found total pain relief or insomnia/fatigue benefits by following a specific diet without medication to help... There are MANY diets out there that claim to be cures too, they play on our need for a cure but so far they've always failed!! I'm not suggesting you don't try these things, tho I would avoid them if they are trying to sell ANYTHING!!! So many people have spent a lot of money buying products or self help guides etc to get little or no benefit.

I know the article you are talking about & it is a great read. It always made me wonder how she found out she needed to cut oxylates out of her diet tho, tests I'd imagine?! Well I'd ask if you can be tested to see if ure intolerant before just cutting it out ... U have no idea if will affect ure Crohns & that fact scares me!! :?

Sorry I've concentrated on FM, but out of ure history that is all I have direct knowledge of & I've ran my own support group for a few years now. Im in no way claiming to be or know more than any other FM patient tho ... I'm just passing on wot I've known for myself & from people within my group. I'd always ask for ure GP's or Rheumatologist's advice b4 trying anything new or changing anything in a big way in ure life.

I wish you all the luck, you sound like you need a break (((hugs))) x