Postpartum Polyarthragia? In a lot of Pain - Ankles, Feet, Hands, Wrists, Spine - Is This a Flare?

[tsstarry]

Hello. I was diagnosed in 1991 with Crohn's disease at 10 years old. I have been in remission and not taking any prescriptions since 2001. I got pregnant last August 2014 and gave birth this year in May. Nearing the end of my second trimester I developed what my OB called, pregnancy induced carpal tunnel syndrome. At the same time, I was also diagnosed with hypothyroidism. At the end of my pregnancy I also developed hypertension and had to be induced a few days before my due date. I was immediately taken off the thyroid medication right after delivery.

The first two months my hands and wrists got progressively worse and I was referred to a hand orthopedist. The orthopedist agreed with my OB that it was hormone related and that it should clear up soon. It didn't. In fact, just before I saw the orthopedist, I started to get very similar pains in my feet and ankles that was also accompanied by burning and numbness. My thyroid was tested two weeks after delivery with "normal" results and again at 12 weeks with "normal" results.

During all this time I had the regular tiredness you would feel from waking up several times during the night to nurse (I am breastfeeding). When my ankle/foot pain started to progress, I noticed I was getting severe fatigue. My baby was at the time and still is, only waking 1-2 times during the night to feed and I am now able to get 7-9 hours of sleep altogether. I am more exhausted now than I was in the first two months. It has been 19 weeks since I gave birth now.

I have had x-rays done of my wrists hands, ankles, feet and spine. None of which explain my pains. My hand/wrist, and foot/ankle x-rays were normal with only mild osteoarthritis found in my right hand. I do have scoliosis with a 19% and 9% S-shaped curvature with kyphosis in my thoracic spine. My pains and weakness is getting worse and I am only able to take acetaminophen since I am nursing.

My primary care physician has diagnosed me with polyarthralgia and is unsure what may be the true cause of my condition. I have been referred to several different types of doctors including: neurologist, rheumatologist, pain management, physical therapy, spinal orthopedist, and endocrinologist. The endocrinologist ordered labs recently to check my thyroid, B12 and male hormone levels. I have not gotten those results yet. He thought my symptoms may also be related to my Crohn's disease. I am having a nerve conduction study and an MRI done soon. The rheumatologist said he didn't think I had a rheumatological condition and sent me away. I am waiting for a referral to see a gastroenterologist in my area. I saw the hand orthopedist one last time and he said it was a good idea to go to an endocrinologist since he was unable to truly diagnose or treat me entirely (he only does hands).

My conditions have progressed both in my hands/wrists and feet/ankles. I am experiencing: Constant aching, sharp shooting pains, stabbing pains, electric shock, numbness, burning, weakness and losing mobility in my left foot. Hot and cold compresses make the feelings worse. The pains are also worse at night and may be a cause of my fatigue during the day. I am seeking to find if anyone else has had a similar experience after pregnancy so that I may be able to find the root cause, treat my symptoms and get some relief finally. I have not been able to return to work because of my conditions and I have problems caring for my infant sometimes because I am too weak or in too much pain to pick him up and hold him. I have had to take to laying down most of the time in order to feed him. I know now that Crohn's disease being an autoimmune disorder, can attack other parts of the body, especially the joints. I'm not sure why I was not referred to a gastroenterologist in the first place based on my medical history with Crohn's disease.

Any thoughts or ideas regarding what may be causing my symptoms are welcome! Thank you!!!

 

[my little penguin]

http://www.spondylitis.org/Learn-About-Spondyloarthritis/Enteropathic-Arthritis

Look at the symptoms
Tagging maya142

Some rheumos are not familiar with SpA and the crohns connection

Ds has the juvenile version in his hands that runs independent of his crohns flares
Good luck

 

[Maya142]

I second seeing another rheumatologist - someone who is familiar AS (ankylosing spondylitis) or spondyloarthritis. Some of your symptoms could be arthritis, but some sound nerve-related - electric shocks, numbness etc.

Both my daughters have AS, the younger one also has IBD. In her case, the AS and IBD seem to flare at different times. Arthritis is actually fairly common with IBD, CCFA has some good info about the various kinds:http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Good luck!

 

[Jennifer]

Tagging Afidz, thank you.

 

[Axelfl3333]

Try to avoid carpal tunnel releases surgery I,ve had both had both hands and elbows done numerous times and it wasn't,t that effective which is common.

 

[afidz]

Hello, I have never been pregnant, so take this all with a grain of salt. I sincerely hope you start feeling better soon though.
I am assuming since you do not have a GI that you were in remission before your pregnancy. Are you having any GI issues? In most women, being pregnant is a temporary cure; if you will, for any auto-immune symptoms. However, in a very small percentage, it does the exact opposite. I have read a few stories on here of women getting very ill toward the end of their pregnancy and not being able to bounce back after they give birth.
I am trying not to bounce around, but I have several different comments, so just stick with me. I have been in remission since 2009. Every once in a while, maybe once or twice a year I go through mini flares. Except I don't feel it in my guts. I don't get D, I may get nauseous but other than that, I feel it in my joints, skin and eyes. A month or 2 ago, I woke up with extreme muscle weakness, couldn't use my arms for anything. Couldn't even touch my head. Now, I also have ankilosing spondylitis so its hard to say what caused that pain and weakness, but the er doctor said that it was definitely auto-immune related. I am not sure I get the electric shocks that you mentioned, that definitely sounds nerve related. Did you have an epidural? Sometimes those can interfere with the nerves in the spinal cord causing your nerves to misfire. Everything else you described sounds like it could be auto-immune. I am not exactly sure what meds you can take while breast feeding, but steroids if you can take them might help/ How much longer do you intend to breast feed?
Did the rheumy do any tests before sending you on your way? Blood tests to check for RA or HLA-B27? I had a rheumy tell me 6 years ago that I was making up my symptoms and they didn't make any sense. I was discouraged and didn't go to another one until this year, where I was diagnosed with AS. It makes me mad when doctors don't take you seriously. I am not sure what kind of insurance you have, if you can get in with another rheumy, I would try to do so.
I Think thats all I have to say right now, sorry if I jumped around all over the place

 

[Lady Organic]

I notice there is duplicate of this thread so I m going to re-post my rely here:

Hi and welcome.

I have polyarthralgia/arthritis. Is is IBD related. It took many different doctors to finally understand it.

in my opinion, it would be very important for you to have a gastroenterologist who monitor your remission at least once a year even if you say you are well since 2001. A GI you can count on in case of any problem or emergency. Crohn's is a relapsing disease and we never know... also sometimes, symptoms can be so minimal that we dont feel them but still cause damage. so its really safer to have a GI for a lifetime.

Arthralgia can preceed, join or be post/independant of IBD flare/activity. IBD related arthralgia seems like a possiblity in your case. I ve been through a lot of doctors too (ive done the nerve test too in the arms with a neurologist) and hypothesis before a hand surgeon finally diagnosed arthritis with Bone scan scintigraphy (I've done x-ray, MRI, ultrasound all came pretty much clean). I am well in remission with my CD now. The arthritis/arthralgia onset was right after a flare and is still ongoing since 3 years, much better than at the beginning though, it has become very minimal now.

Try to meet with a GI who can assess your IBD state and another rhuematologist who offers a second opinion is a good idea too. I had to change my first rhuemy because the first one was completly off and useless.
Trying to find what we have and seeing all these doctors can be very distressful I know. I know you are in pain, but try to remain positive that a solution will come and try not to focus too much on the pain and condition if possible. When my onset started 3 years ago, I literally went into depression with lots of anxiety. I was overly focused on finding what was wrong. (thats my personality, wanting to investigate and control everything). Be positive a solution/improvement will come and continue to enjoy time with your family to change your mind. My symptoms are still present but have greatly improved since onset. I now''accept'' my condition and live happy.
I know you are lactating but whenever you stop, avoid take medication such as Advil, Ibuprofen or other Non-steroidal anti-inflammatorys as these could trigger a IBD flare.
hope this help

 

[tsstarry]

Hello, I have never been pregnant, so take this all with a grain of salt. I sincerely hope you start feeling better soon though.
I am assuming since you do not have a GI that you were in remission before your pregnancy. Are you having any GI issues? In most women, being pregnant is a temporary cure; if you will, for any auto-immune symptoms. However, in a very small percentage, it does the exact opposite. I have read a few stories on here of women getting very ill toward the end of their pregnancy and not being able to bounce back after they give birth.
I am trying not to bounce around, but I have several different comments, so just stick with me. I have been in remission since 2009. Every once in a while, maybe once or twice a year I go through mini flares. Except I don't feel it in my guts. I don't get D, I may get nauseous but other than that, I feel it in my joints, skin and eyes. A month or 2 ago, I woke up with extreme muscle weakness, couldn't use my arms for anything. Couldn't even touch my head. Now, I also have ankilosing spondylitis so its hard to say what caused that pain and weakness, but the er doctor said that it was definitely auto-immune related. I am not sure I get the electric shocks that you mentioned, that definitely sounds nerve related. Did you have an epidural? Sometimes those can interfere with the nerves in the spinal cord causing your nerves to misfire. Everything else you described sounds like it could be auto-immune. I am not exactly sure what meds you can take while breast feeding, but steroids if you can take them might help/ How much longer do you intend to breast feed?
Did the rheumy do any tests before sending you on your way? Blood tests to check for RA or HLA-B27? I had a rheumy tell me 6 years ago that I was making up my symptoms and they didn't make any sense. I was discouraged and didn't go to another one until this year, where I was diagnosed with AS. It makes me mad when doctors don't take you seriously. I am not sure what kind of insurance you have, if you can get in with another rheumy, I would try to do so.
I Think thats all I have to say right now, sorry if I jumped around all over the place

Thank you for your reply. I have been in remission since 2001. I had not seen a GI because I didn't have insurance for years and naively figured as long as I didn't have any symptoms, I was fine. I have good insurance coverage now and have been using it on a regular basis since I got pregnant last year. I do plan to stop breast feeding completely around 9 months after starting to wean at 6 months. I did have a complicated epidural. The anesthesiologist had a lot of trouble inserting it. I was poked about ten times because he kept hitting bone. I didn't really even think about that again until you mentioned it. The rheumatologist did not do any tests, but I had already been tested by my primary care physician for rheumatic diseases. They were negative. Interesting you mentioned muscle weakness because just today I had an episode where my right arm and wrist basically stopped working right for about 45 minutes. I was unable to lift my arm or move my wrist along with, my ring and pinky fingers. It really freaked me out. I had just been using it to prepare my lunch and sat down to eat, then couldn't lift my hand! I decided I would take an ibuprofen since I had already pumped and it should be minimal in my breast milk hours later. I'm not sure if the ibuprofen made it better, or if it just went away. It scared though because it makes me even more afraid to hold my baby, or drive. I have a nerve conduction test scheduled for tomorrow. Hopefully it will help answer some questions.

 

[tsstarry]

I notice there is duplicate of this thread so I m going to re-post my rely here:

Hi and welcome.

I have polyarthralgia/arthritis. Is is IBD related. It took many different doctors to finally understand it.

in my opinion, it would be very important for you to have a gastroenterologist who monitor your remission at least once a year even if you say you are well since 2001. A GI you can count on in case of any problem or emergency. Crohn's is a relapsing disease and we never know... also sometimes, symptoms can be so minimal that we dont feel them but still cause damage. so its really safer to have a GI for a lifetime.

Arthralgia can preceed, join or be post/independant of IBD flare/activity. IBD related arthralgia seems like a possiblity in your case. I ve been through a lot of doctors too (ive done the nerve test too in the arms with a neurologist) and hypothesis before a hand surgeon finally diagnosed arthritis with Bone scan scintigraphy (I've done x-ray, MRI, ultrasound all came pretty much clean). I am well in remission with my CD now. The arthritis/arthralgia onset was right after a flare and is still ongoing since 3 years, much better than at the beginning though, it has become very minimal now.

Try to meet with a GI who can assess your IBD state and another rhuematologist who offers a second opinion is a good idea too. I had to change my first rhuemy because the first one was completly off and useless.
Trying to find what we have and seeing all these doctors can be very distressful I know. I know you are in pain, but try to remain positive that a solution will come and try not to focus too much on the pain and condition if possible. When my onset started 3 years ago, I literally went into depression with lots of anxiety. I was overly focused on finding what was wrong. (thats my personality, wanting to investigate and control everything). Be positive a solution/improvement will come and continue to enjoy time with your family to change your mind. My symptoms are still present but have greatly improved since onset. I now''accept'' my condition and live happy.
I know you are lactating but whenever you stop, avoid take medication such as Advil, Ibuprofen or other Non-steroidal anti-inflammatorys as these could trigger a IBD flare.
hope this help

Thank you for your reply. I plan to see a GI asap. I will also go see a new rheumatologist if my symptoms are found to not be hormone related. I'm hoping to get on some kind of anti-inflammatory soon!

 

[tsstarry]

I second seeing another rheumatologist - someone who is familiar AS (ankylosing spondylitis) or spondyloarthritis. Some of your symptoms could be arthritis, but some sound nerve-related - electric shocks, numbness etc.

Both my daughters have AS, the younger one also has IBD. In her case, the AS and IBD seem to flare at different times. Arthritis is actually fairly common with IBD, CCFA has some good info about the various kinds:http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Good luck!

Not sure if I have symptoms of AS, but I'll keep it in mind. Thank you for your support!

 

[Lady Organic]

let us know how it goes tomorrow.
last year with my current rhuemy we tested a brief small course of prednisone 10mg for 2 weeks to see if my problem was truly inflammatory. It may be something to propose if symptoms persists without answers on other areas.
as I mentionned in my previous post, really be careful with ibuprofen and other anti-inflammatory as these are counter-indicated with an IBD. the first random GP I saw when I started trouble with my wrists refused to give me anti-inflammatory due to my CD history and My GI only accepts Celebrex and for short periods only.

 

[Maya142]

Wanted to add that bloodwork can be negative in SpA. X-rays are also often negative in the earlier stages, typically MRI's are better at showing signs of inflammation. Sacroliac joints are often affected in SpA, but really any joints can be affected. Having hip, foot and spinal pain is fairly common - wrist and hand pain less common. Morning stiffness or stiffness during prolonged periods of inactivity (sitting through a movie, sleeping) is a sign of inflammatory arthritis. So is pain that improves with activity.

NSAIDs are often used for various kinds of arthritis but often aren't allowed when the patient also has IBD. In my younger daughter's case, her arthritis is so much worse than her IBD, that both her GI and rheumatologist agree that NSAIDs are necessary.

We also use heat and ice for pain.

 

[tsstarry]

Wanted to add that bloodwork can be negative in SpA. X-rays are also often negative in the earlier stages, typically MRI's are better at showing signs of inflammation. Sacroliac joints are often affected in SpA, but really any joints can be affected. Having hip, foot and spinal pain is fairly common - wrist and hand pain less common. Morning stiffness or stiffness during prolonged periods of inactivity (sitting through a movie, sleeping) is a sign of inflammatory arthritis. So is pain that improves with activity.

NSAIDs are often used for various kinds of arthritis but often aren't allowed when the patient also has IBD. In my younger daughter's case, her arthritis is so much worse than her IBD, that both her GI and rheumatologist agree that NSAIDs are necessary.

We also use heat and ice for pain.

Thank you for your replies. Hopefully I'll get an answer soon about what is causing my symptoms. Aside from the pain, the numbness and loss of mobility in my left foot is also really concerning to me. My right foot is now starting to develop a numb area in the heel just like the left foot. I don't recall ever having issues with my bowels when taking ibuprofen. I've taken it for years prior to my pregnancy for chronic shoulder pain. I just thought I shouldn't take it regularly because it's not a good idea while breastfeeding.

 

[afidz]

Ibprofen is also bad for Crohn's so try to avoid it all together if you can. There are some days that I completely give up and take it because I need the inflammation to go down. Some times you gotta do what you gotta do. Its unrealistic, at least to me to say that I won't ever take it again. But I pay attention to my body when I take it in case something does act up.
How did the test go today? I have never had one of those before. Jennifer, didn't you a little while back? Or was that something else?
I'm glad you have insurance again. I don't think there is anything scarier than being chronically ill and not having insurance. Our health care system is so jacked up, hopefully someday those words won't be spoken and everyone can get the care they need.
I hope that they didn't do any damage to your nerves with the epidural, but it is definitely something to consider/bring up with your doctor.
I read a few people suggesting AS, while I wouldn't rule it out, your symptoms aren't typical of where the symptoms start in women, at least not that I have read. In women, AS typically starts in the pelvic bone and sacroiliac joints. So you would feel pain in your lower back and hips. But you have scoliosis so it would be hard for you to differentiate pain from that and pain from anything else. But like someone mentioned, it can literally take years before any tests come back positive because it develops slowly.
Hopefully you and your doctors can figure it out. I can't imagine being scared to hold your baby.

 

[tsstarry]

Ibprofen is also bad for Crohn's so try to avoid it all together if you can. There are some days that I completely give up and take it because I need the inflammation to go down. Some times you gotta do what you gotta do. Its unrealistic, at least to me to say that I won't ever take it again. But I pay attention to my body when I take it in case something does act up.
How did the test go today? I have never had one of those before. Jennifer, didn't you a little while back? Or was that something else?
I'm glad you have insurance again. I don't think there is anything scarier than being chronically ill and not having insurance. Our health care system is so jacked up, hopefully someday those words won't be spoken and everyone can get the care they need.
I hope that they didn't do any damage to your nerves with the epidural, but it is definitely something to consider/bring up with your doctor.
I read a few people suggesting AS, while I wouldn't rule it out, your symptoms aren't typical of where the symptoms start in women, at least not that I have read. In women, AS typically starts in the pelvic bone and sacroiliac joints. So you would feel pain in your lower back and hips. But you have scoliosis so it would be hard for you to differentiate pain from that and pain from anything else. But like someone mentioned, it can literally take years before any tests come back positive because it develops slowly.
Hopefully you and your doctors can figure it out. I can't imagine being scared to hold your baby.

Yeah, I only take ibuprofen when I absolutely can't stand the pain anymore.

My test yielded results that suggest I have an issue with my lower spine that is at less likely causing the numbness and loss of mobility in my foot. My neurologist wants to completely go over the results after comparing them to my MRI results when I get that done. So I'll have to wait to know exactly what he found.

 

[Jennifer]

Jennifer, didn't you a little while back? Or was that something else?

I've had an Electromyography (EMG) done before because I had numbness and pain in my left thigh. Nothing really came of it though because the doctor who ordered it retired before I had a followup appointment with him. In the end it was determined that it was from arthritis and bulging discs in my spine and I was told to stop lifting and to rest. It's not as bad as it was but it will still go numb if I lay on my back.

 

[tsstarry]

So I saw the neurologist today and we went over my EMG and MRI results. The MRI was normal. Well it obviously showed my scoliosis and moderate kyphosis. There wasn't anything else that stood out though. The EMG however showed abnormalities with my peroneal nerve associated with the S1 vertebrate. So this explained my numbness and lack of mobility in my foot. But it still doesn't explain what is causing the issue with my nerve, or anything else for that matter. The neurologist basically said I should talk to my spinal orthopedist more in depth about the results of the EMG and MRI. I have my appointment with the spinal orthopedist in mid-November. In the mean time, I've been getting more sciatica in the past week along with abdominal pain and tenderness and loose stools. So a Crohns flare up is sounding more imminent as the explanation for some of my issues at least. I saw my primary care physician last week and got my referral to see the gastroenterologist. Hopefully I will be able to schedule an appointment with them soon. I'm getting really depressed about not getting answers and no pain relief in sight.

 

[afidz]

At the very least, you have doctors recognizing that there is a problem. That is a huge step. I know right now it doesn't' help your situation with caring for your son, but it is a step forward. I really hope someone starts figuring out whats wrong though, for both you and your son

 

[tsstarry]

I wanted to post a quick update. So all of the last testing revealed that my Crohn's is in fact still in remission. Although, I am still no closer to an answer to what is causing my polyarthralgia symptoms. I still get severe pain in my ankles, particularly on my left side. I also get sciatica pain on that side pretty bad, so they intensify each other. My hands and wrists are feeling somewhat better, though not always. My trigger finger has returned as well in my right hand. I had an interesting painful experience last night that made me really try and re-evaluate what is going on in my body. I woke up to severe pain in my right ankle and foot. I was experiencing loss of mobility in my foot and tried stretching and moving my toes. When I moved my toes, I felt a distinct clicking in my middle toe. The same feeling I get in my trigger finger. I did look up if trigger toe is a thing. It is. I also found a numb spot on my right heal (smaller, but similar in location to the one on my left foot). I think I'm going to have my doctor order a hip and full leg with foot imaging test. I am also finally going to get a referral to a podiatrist. Not sure why I haven't already. I can't handle this constant pain. There HAS to be something all these doctors are missing! I'm starting to wean my son now from breastfeeding, and I have found some stories of women with similar postpartum pain who experienced relief after stopping breastfeeding. We'll see what happens!

 

[amyh]

Sounds like my Crohn's Arthritis. I had it in my ankles, wrists as well as knees and elbows. Some mornings were so bad, I couldn't even walk or close my hands. Got worse in the evening and real bad when I woke up. Lots of numbness and trigger finger like symptoms. I thought it was Rheumatoid Arthritis at first, but then my GI doc said Crohn's arthritis is very common. I started treating myself for inflammation, by eating non-inflammatory foods and taking therapeutic levels of Turmeric Supplements (Inflama-Rest). After a month of taking the supplements and being careful to stay away from inflammatory foods, the arthritis faded away.

 

[tsstarry]

Sounds like my Crohn's Arthritis. I had it in my ankles, wrists as well as knees and elbows. Some mornings were so bad, I couldn't even walk or close my hands. Got worse in the evening and real bad when I woke up. Lots of numbness and trigger finger like symptoms. I thought it was Rheumatoid Arthritis at first, but then my GI doc said Crohn's arthritis is very common. I started treating myself for inflammation, by eating non-inflammatory foods and taking therapeutic levels of Turmeric Supplements (Inflama-Rest). After a month of taking the supplements and being careful to stay away from inflammatory foods, the arthritis faded away.

Thank you for sharing. I have been tested for arthritis and RA. I had mild arthritis on a finger that had been broken years ago. Based on my EMG results,I'm leaning towards an issue related to nerve entrapment. But I don't know a cause.

 

[amyh]

I also remember a time when I was pregnant, I had pain in my wrists, before I was ever diagnosed with Crohn's . I went to physical Therapy and they did micro-trauma therapy, where they lather my arms up with coco-butter and scrape my arms and wrist with a plastic disc, breaking up all the fibrous tissue on the inside. In theory, it was supposed to stimulate healing in that area, which will also heal the tendons. However crazy and sore it was, it did actually work....

 

[supernova]

Hi tsstarry,

My physical postpartum/breastfeeding experience has some similarities to what you have described, all leading to an ankylosing spondylitis diagnosis by a great rheumatologist.

I subsequently ended up going to a podiatrist and an ankle/foot ortho MD. The podiatrist gave a series of injections in my foot with denatured alcohol for a Morton's neuroma, without any relief. Then the ortho MD diagnosed posterior tibial and achilles tendonitis. PT and a walking boot were prescribed and helped immensely.

Right now the arthritis is under good control but it used to painfully migrate all around my peripheral joints along with my left pelvis. Any time the left pelvis swells all sorts of things start to go wrong internally.

Have you found any relief and answers yet?

Best,

supernova

 

[Jennifer]

She hasn't quite gotten a diagnosis or relief yet. She did see a podiatrist but I believe they said it has more to do with her back so they didn't do anything and I think she's going to see a neurosurgeon about her spinal test results from the MRI she had. I believe there was something wrong in the S1 region or if there were then that would explain the pain in her feet/ankles a bit more. I'm a terrible sister for not remembering. Basically she's still getting passed on from doctor to doctor and no treatment between them.