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Goodspeede
I titled this joint pain, but I am not exactly sure that is an accurate description of what I have going on. In my pre-jpouch days I suffered really bad joint pain and pretty much just aches & pains with stiffness throughout my body - which MANY of us have gone through I'm sure! Well since my j-pouch creation (back in 2005) I have experienced intermittent pain, similar to what I have felt when I was sick. It is not everyday like when I was sick, or nearly as bad. I was on celebrex back then too - figured I would mention that.
Anyways, lately it seems to be happening more frequently. Today I am having a pain that I would describe as a dull ache through out my arms and down into my wrists and hands. No sharp pain. Shoulders and neck are stiff. The rest of my body feels OK. My lower arms (from just above the elbow, down to my wrist) are what is bothering me the most right now. Both sides of the body. I can deal with it, but I am getting concerned. I don't like how I am noticing it more often and how long it is lasting. Usually the pain sort of fades away - not sure if it is associated with moving around more or not though.
My question is, do you think I should see a doctor? And if so, what type of doctor? Should I start with my general practitioner? Also, what should of questions should I be prepared to answer? I don't want to have them "ummmmmmmmmm" response. For now I am going to do just what I do with my GI symptoms - just keep track of the type of pain, how long, how frequent ... I wish I had all the long, but better late than never I suppose.
Thanks in advance for any responses out there. This website is such a great tool for information. I really appreciate all the posts and comments out there.

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J jeaneMember
Since my jpouch surgery I experience all over muscle and joint pain. Never had it with UC. My GI says it is a manifestation of the autoimmune disease even though colon is now out. I also experience some of this muscle pain from cipro. Arthritis symptoms are very common for people with IBD. Also, make sure you are drinking enough fluids. It could be dehydration as well.
J
TE MarieTE MarieMember
Have you become more fatigued? Try searching fibromyalgia and see if any of this sounds like you. Autoimmune diseases and syndromes tend to come in groups. I have many problems with my neck and shoulders, back, hips, knees, arms - all over basically. I have a bad case and you could have a milder case or nothing like it at all.
TE Marie
skn69skn69Member
Good,
I have never known a time in my life without joint pain...I was the only kid in grade school that suffered from it...some times better or worse, sometimes all over general aching and some flares where it is so bad that I am crying in pain...I get mostly sacro-ilitis, mid back, knees, ankles, wrist and shoulders...(what else is there?)...I've tried chiropractic (ok for about 6 hours after treatments but not worth the costs in the long run), suppliments (glucosamine + condriton), diet (sugarfree, starch free, protien free...)...nothing helps...I think that the only time that I am pain free is when I work out...My pain med is exercise...when I walk, climb or sprint (can't jog worth a darn so I do fractioned workouts...sprint 50 yards, walk 50 yards...it ups the metabolism without killing my knees too much)....I get relief for up to 6 hrs...but I have to do at least 45mins workout for that to happen, really warm up the muscles and ligaments...it actually helps with the inflamation.
I have not tried biking or any other exercises but I work with 3 sizes of yoga balls and do some cool-down stretching on them afterwards for my abs...
My rhumy has put me on anti-inflamatories for life, uppping the dosage or strength as needed because I refuse anything stronger for now...he says that there is no cure, only maintenance.
Sharon
skn69
M mari60Member
yes,exercise is the best medicine for me too.
Since the pouch ( a bit over 2 years ) I got lower back and legs pains : sacroileite , the doctor suggested me to take medicines,but I decided to try to do exercise regolary and see how it goes.
I go once a week to phisiot. class and I do the exercise at home every day ( ? ) for 30mns and I go swimming 2 times a week.Also I go walking if is'nt too hot,too cold,too rainy...and I use the yoga balls too,they are very good.
So far the pain lessened and I feel better BUT I have to exercise regolarly and I could skip doing just for a day or two not more...
It seems a good reason to get and stay fit, probably I would be lazy otherwise...
M
TE MarieTE MarieMember
There are a whole host of other problems we can have that could crop up including thyroid problems and Anklosing Spondylitis which is an arthritis inflammation and stiffness of joints in the spine, neck, back and pelvis. A friend of mine has AS and several people on here describe similar symptoms to hers. The problem is all of the diseases have overlapping symptoms. That friend has 6 identified autoimmune diseases plus she is loosing her sight and hearing and she is 58 years old. She has IBS not IBD.

The following is a list of 100 autoimmune diseases. Besides arthritis, joint pain can also be a symptom other problems.

http://autoimmunediseaselist.com/a-to-z.php


vanessavy, you have been battling this a long time as your c.diff was months ago. I hope you don't have Lyme disease....
TE Marie
vanessavyvanessavyMember
My c.diff was back in Feb. so yea awhile ago and my pain has no expanation. No thyroid issues, fibro, lupus or menapause (so far).

I was in the ER a few weeks ago. Lost function of my legs, had to wheel me in. Had breathing and heart issues. Felt like I was having a stroke or something weird. My feet cramped and hands. No electrolyte issues or anything wrong actually but mild anemia and a weird kidney.

3 years ago I got bit by a tick so running out of things to test for. My symptoms match lyme so we'll see!

The pain is a pain in the butt though! I rather have one issue than a few.
vanessavy
GoodspeedeGoodspeedeMember
Thanks for the replies everyone. The comments were very helpful, but what stuck with me the most was the one about dehydration. I try to stay up on my fluid in takes, but often my good intentions dont follow through as planned. I DO need to drink more and when I do get dehydrate it hits me like a ton of bricks. I had a headache that day too, which I always get with dehydration.
Sometimes the simplest and most obvious answers are the ones I overlook! I am going to make a conscious effort to keep up on my fluids the next few weeks, and document if and when I start feeling bad. I have had recent blood work that showed my thyroid is OK, not anemic, and b12 is good. SO I bet I am fighting dehydration more than anything else here. Thanks everyone!
Goodspeede
DH Donna HMember
Goodspeed,

Has your joint pain improved since you are drinking more? I certainly have the joint pain that you describe, especially in my neck and get headaches every day. It sounds like everyone agrees that it is a manifestation of IBD and I am assuming it's here to stay unfortunately. I notice that when my pouch is giving me trouble, I also get a lot of body aches all over like you described - arms, legs and a general feeling of malaise.
DH
TE MarieTE MarieMember
Donna, you might want to check the link I posted above. I thought hydration problems were causing my headaches but unfortunately found out they were migraines. I now am on one more daily medication to keep them at bay. I still get an occasional headache but nothing like the daily ones before. I was diagnosed by my neurologist and had a head CT scan as well. There could be another underlying condition, besides IBD related, that is causing your joint and other problems as well. Take Care
TE Marie
PouchomarxPouchomarxMember
I have more frequently been suffering from the full body weakness and joint pain. not sharp pains but just a dull pain throughout my body. some days worse than others I guess. over a year ago I went to a Rheumotologist and blood work was all ok, tested for Lupus and RA but said not it. Today it feels like a ran a long marathon and the body is just dragging.. could this be a fibromyalgia thing and what would be the best doctor to go see about this? and what are the treatments and/or meds for it?
Pouchomarx
Jan DollarJan DollarModerator, RN, retired
I'd see a rheumatologist, but not the same one you saw before. Some rheumatologists rely too much on positive blood tests or radiology to diagnose these tricky inflammatory syndromes. My enteropathic arthritis (related disorder of ankylosing spondylitis) was diagnosed based on my symptoms and medical history. I had NO blood markers, other than elevated inflammatory marker of CRP. This was after many years of symptoms and seeing podiatrists, orthopedic surgeons, physical therapists, etc. and being treated for individual issues. Turned out they were all related. I had no spinal damage yet (but early inflammation of the spinal ligaments was present in MRI), and I had evidence of chronic tendonitis in my elbows, heels, knees, etc. All related to enteropathic arthritis.

Plus, fatigue that is typical of fibromyalgia is also typical of inflammatory arthritis. If you have chronic pouchitis, that can also cause chronic fatigue, because the same inflammatory chemical circulate in your body.

Proper diagnosis changed my life. Not perfect, but understanding the disease made a world of difference for me. I'm not saying this is what you have, but it is often misdiagnoses as other things. If you have IBD, then you are already at risk:
http://www.spondylitis.org/about/main.aspx

Jan Smiler
Jan Dollar
DH Donna HMember
TE Marie,

I have been diagnosed with migraines by a couple of neurologists and none of the medication they gave me helped. My usual remedy is caffeine which usually works. A few times a month it does not and then i take a couple of Excedrins and it eventually goes away. I had a 20 hour headache yesterday and caffeine did not work but since i am having surgery on Tuesday, i cannot take aspirin which is in Excedrin. It's a very long night when your in a lot of pain. My headaches are always associated with tremendous neck pain too.
DH
TE MarieTE MarieMember
Donna I've had sinus surgery for headaches and I get chiropractic adjustments for headaches as well as now medication. I have had many causes for headaches over the years. The type the chiropractor got rid of related to my atlas, the top two vertebra and she does not adjust the traditional chiropractic away. After she got rid of those headaches my blood pressure dropped and I went off of blood pressure medication - that was 8 years ago. I still go to her around once a month for tune ups. I no longer have sinus infections after the sinus surgery and that is awesome as my teeth hurt with those and the resulting headaches.

I am taking Topiramate twice a day for my migraines. I started out on 25 mg each time and the dose was increase to 50, to 75 and finally to 100 mg twice daily before it was effective. Excedrine Migraine is what I was taking, that and Ibuprofen for the headaches but they cause rebound headaches so what do you do? Plus we aren't supposed to take NSAIDs either.

I hope you fine relief Confused
TE Marie
TE MarieTE MarieMember
Pouchomarx,
Please google fibromyalgia for the symptoms. They use to use the pressure points, which you can try for yourself, to diagnose but it's not that simple. It's more of a muscle aches than joint ache but when the inflammation comes it feels like my joints are inflamed as well. I was diagnosed by my GP's and Internist. I went to a Rheumy after my surgeries to see if I had arthritis like Jan Dollar has. She said I had regular arthritis and agreed with the fibromyalgia diagnosis. If I overdo it I can suffer for days after. I have flares as well. It use to be explained as inflammation of the connective tissue between the muscle and skin. Think of a chicken and when you pull the skin off of the meat. There is a clear connective tissue that holds the skin to the meat - this is what is getting inflamed. That's one explanation. Since then there has been more research but I think its a good way to visualize it. I get red inflamed skin. I use to have a mild form but now it's bad and disabling. For instance currently the inflammation is visible on the right side of my body around my collar bone. I also have no energy as it's chronic fatigue as well. There are many many autoimmune disorders, syndromes, diseases and their symptoms overlap. Jan is right in that you should see if you have something like sjorgren's, fibro, both or something else.

It is frustrating. Good luck Smiler
TE Marie
Jan DollarJan DollarModerator, RN, retired
Frustrating for sure! With enteropathic arthritis, the inflammation is where the tendons and ligaments attach to the bone. So, it feels like in the joint arthritis + tendonitis. Confusing, as it can seem like a repetitive stress injury (like tennis elbow). But, when it travels from joint to joint and in weird joints that are not involved with repetitive stress (like where your collarbone joins the breastbone), then it becomes more of an "aha" moment. With fibromyalgia, you do not get that.

But, this is where a good practitioner comes in handy. You need a rheumy who listens, and will ask the right questions.

Then, once diagnosed with whatever it is, you also have to be willing to try the suggested medications (many are not).

Jan Smiler
Jan Dollar
P PDXDavidMember
quote:
My question is, do you think I should see a doctor? And if so, what type of doctor? Should I start with my general practitioner?


Goodspeede,

I saw my GP two days ago for a similar issue. Hip pain for a few weeks - started with right hip and traveled to left hip. When it's bad it's debilitating and requires a cane to hobble around painfully. Today it hurts, but I can move without a cane.

I got a call from the GP that said the Xrays showed normal healthy hips. That's good news, but it leaves me feeling frustrated. With all the pain (and I'm talking dramatic pain here), you'd think the xrays would show my hip had aliens nesting in there or something.

So the next step is an MRI. But I hate to waste medicare money on a wild-goose chase that is going to end with big question marks, and no definitive diagnosis.

My thought process has been that since UC is a rheumatoid condition, I ascribe every ache and pain to related rheumatoid conditions. But pouring over the posts on this site, it seems that there is a laundry list of other just-as-likely candidates.

I hope I don't end up wasting the doctors time, the taxpayers money, and a lot of everyone's effort, and end up at square one with no diagnosis.

I don't have the appointment for the MRI yet, but I can almost guarantee one thing: When I finally go in for it, my hip will feel just fine, and the very next day it will start hurting again.

Please keep us up to date on what is decided about your hip pain. I think a lot of us are in the same boat.
P
GoodspeedeGoodspeedeMember
Hi everyone -
This has been a really informative thread to read. Thanks to all who responded!
My pain is still pretty consistent as to how I described it in my initial post. I have been keeping track of it in a daily journal, but so far I am not finding any sort of hints as to what might be causing it or related to it somehow. However, I do find that if I don't drink enough fluids that the pain is much worse. The dull ache seems to be around no matter what, but if I am behind on my fluid intake I find that the pain is more intense and difficult to deal with.
One question though: Is it fact or myth that moisture/cold can effect arthritis symptoms? I live in a pretty damp environment in the North East. When it is raining, or rain is coming, it seems like things get worse. More of that throbbing feeling. Or is it all in my head? I'd appreciate some feed back on that - thanks.
I am still dragging my feet on going to a doctor. Right now my husband is recovering from brain surgery, so we have been focusing a lot on that lately. And quite frankly, I am just sick of doctor appointments. I know its not a good reason, but that's where I am at right now.
Again, thanks to everyone who has been responding. I am curious to see what happened as far as doctor diagnosis goes for others in a similar situation. It gives me some ammo to through at the doctor if need be. Luckily, my GP is pretty decent and will often work with me more as a "team effort" when it comes to treatment options. I really think it is important as IBD patients that we find a doctor who can see the big picture ... easier said than done though!
Goodspeede
AyrishGrlAyrishGrlMember
Your arm pain sounds a lot like the pain I get from my Fibromyalgia. The achy pain that seems to radiate out from my elbows up to my shoulders and neck and down to my wrists and hands. My hands get weak and clumsy when its bad. I take Lyrica for my fibro and Tylenol 3 for pain. I also have a pain lotion the doctor gave me (similar to Votaren but compounded by a special pharmacy) and that lotion helps a lot when the arm pain is bad.
AyrishGrl
skn69skn69Member
Goodspeede,
Fact or fiction, I don't know but I can usually tell when a storm is coming on...in my hips, ankles, neck...well, just about everywhere. Storms and cold/high humidity kill me but mosit heat applied directly to the achy joints help. So do hot baths, constant motion (walking or a light, repeat motion for the arms or shoulder without weight or forcing)...
I live off of NSAIDs but realise that their days are numbered for me...I am going to have to bite the bullit and go on to something stronger and less aggressive on my digestive tract...intermitent bleeding is starting.
I understand the frustration of going to doctor after doctor...we need a break from them but you need to get this thing looked at...and find out what it is all about.
How is your hubby doing?
Sharon
skn69
GoodspeedeGoodspeedeMember
I have a heating pad at home that is my best friend, ha ha. My husband jokes that I cuddle with it more than him ... he may be right! His recovery has been a bumpy road. He had surgery for a chiari malformation - and the surgery isn't really a cure, it just helps relieve some symptoms (that's the goal at least). However, it has been about 5 months since his surgery and now his nerves are starting to "wake up", so some of his symptoms are resurfacing. It is more difficult for him to deal with emotionally than physically. He just is frustrated with his limitations. I am sure everyone on this site can relate to that!
I think I will bite the bullet and see my GP. I am currently on Wellbutrin, and I would like to discuss a plan to wean off of that. I just don't think I need it anymore. I have read that some anti-depressants can help with pain, such as Cymbalta (spelling?). Does anyone know why that is? I know that wellbutrin primarily deals with dopamine - not sure what other meds deal with really, but I hope coming off of the wellbutrin doesn't make the pain worse. I am probably jumping the gun on that one, but it will be something I bring up with the doctor.
I really don't want to take anymore meds unless I really need them. I am sure most of us feel the same way. At times I DO need them, but most of the times I am lucky enough to just be able to put up with the pain. It's more of a nuisance than a problem at this point. I am just a worry-wort and I get afraid things will eventually get worse.
But I gotta tell ya, dealing with this pain sure as hell beats dealing with going to the bathroom 30 times a day! I am gonna try to focus on the good. I think it helps.
Goodspeede
TE MarieTE MarieMember
I was on Wellbrutrin before my j-pouch surgeries and an SSRI was added after them. When we loose our colon it affects he mind/gut connection. I know most people on here are not on antidepressants but you might not want to be so quick to quit taking what you are on. I think it's great if you don't need to be on any medication - I wish I didn't need to take any meds at all. Please do a search on the subject, there is a lot of research on it. My Internist has a lot of IBD patients and she is the one that prescribes most of my medications.

Cymbalta is one that is designed to work well for depression and fibromyalgia pain. Unfortunately it didn't work for me. It did help with my pain some but made me think of dying all day long. I wasn't suicidal but thought about ways I could die, ie tire blow out or head on crash while driving my car, falling down the stairs while doing laundry.... It was scary, so scary I went off of it without tapering. Never ever do that for any antidepressant everyone!!!!

Unfortunately there is no magic medication for fibromyalgia. When I was first diagnosed they started out by putting me on a mild antidepressant. Gabafentin prescribed for some with fibromyalgia. I take it at a lower dose for neuropathic pain in my feet and my neurologist is going to increase the dose to see if it helps with my fibro pain. My doctors only change one medication at a time so that if there are any problems we know which medication to attribute it to. There's loads of fibromyalgia information on the internet.
TE Marie
T TCMMember

This is more of a thank you than a contribution.  I stumbled across this thread and am glad I did.  While sure I have some arthritis in my knees, I've had some new pains (lower back and hands) in the past few years.  I get along OK but it would be good to be rid of as much pain as possible, short of taking meds for it.  Anyway, I'll discuss with my doc, thanks to all of you who contributed to this topic.  I sincerely hope that you all feel better over time.  

 

T
skn69skn69Member

TCM

I have found that the best exercise (if you have access) is swimming...I am 'home' for the summer and our residence has a pool so I spend about 3-6hrs in it daily...although the lower back pain/sacroilitis is still there it is less present while in the water and the exercises that I do help to ease some of the severest pain> I do about 3hrs of exercise every morning.

Heat helps a lot but so does ice so I alternate both.

I have been off of most NSAIDs lately as per my MDs request...so the less drugs the more exercise and heat.

Sharon

 

skn69

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