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12-15-2017, 05:38 PM   #13321
Trysha
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Someone has to help you Izzie.......start with your family doctor and if not helpful go back to the ER....or try a different hospital.
You certainly need help ....also a gastroenterologist might be a good move.
Just donít give up..they cannot ignore you.
Feel better soon
12-15-2017, 07:22 PM   #13322
ronroush7
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It got even worse after I posted - I'm a staffing coordinator and a nurse called out and I was unable to find a replacement. I was already feeling horrible and just wanted to go home and then had to deal with the stress of finding a nurse. I tell you, I was so tired - physically, mentally, and emotionally - by the time I left, I nearly cried while driving. My depression and anxiety are doing very well (I saw my psychiatrist yesterday and I'm doing fabulous) but my physical symptoms are really causing problems.

In other news, I am seeing my new primary doctor tomorrow! Please pray it goes well. I have to arrive 30 minutes before the appointment time and I have a lot to discuss with her. I hate that I have to change doctors but my primary is just not easy to get a hold of anymore and that doesn't look like it will change anytime soon...
Sorry you had a rough day. Praying for your appointment.

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12-15-2017, 07:40 PM   #13323
akgirl
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Izzie, Iím literally about to cry for you. I cannot image how hopeless you must be feeling. You went through SO much torture with that surgery. Why wonít the doctors help you?! Why donít they care?! I really donít get it, but Iím so so sorry that youíre going through this. If you need to talk, or even just vent, Iím here. Iím honestly so mad for you.
When will you be moving? Hopefully there will be more helpful and caring doctors in the town that youíre moving to. Maybe itíll even have a hospital with doctors who listen to you and donít let potentially incompetent residents perform major surgery without even notifying you.....

MissLeopard, Iím so glad that your new doctor is so helpful! I know how exhausting it is having to explain everything to a new doctor. And then you never know how theyíre going to react.....will they even believe you? But this doctor sounds like a great one! Can you have her visit my town and be my doctor too? Keep us updated on your upcoming appointment. I feel like more answers are on the horizon for you!
12-15-2017, 08:20 PM   #13324
Jabee
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That sounds awful, Izzie! Do you have any friends who are medical professionals? I wish I could be of more help. Do you have anyone who can come with you to your next doctorís appointment or to the ER and advocate for you? Itís really helpful to have someone who is feeling well speak up for you when you are too sick to do it yourself. Letís be real: by the time we find ourselves at the ER we are too sick to explain, argue, defend, or even ask for anything. Iíve had a couple of really great ER doctors who took over my care when Iíve been in an awful flare and canít eat or drink. But Iíve also had some who just couldnít wait to get rid of me. Please try to find someone to go to with you to your doctor so you can get a reference to a surgeon who is actually interested in you.
Yesterday, 01:12 AM   #13325
Izzie
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My mother was with me in the ER and demanded many things but it's like talking to a wall. The treatment is horrendous. It's like they think you're some hysterical woman "complaining about a little heartburn". I feel like my chest is caving in the pain is so bad. Asked for pain medication before I left but they told me there's nothing they'll give me. I was crying and they stared at me, said "you'll just have to take your meds" (the PPIs I had explained moments before don't do anything for the symptoms or the pain) and then left.

I'm not sure moving is even an option anymore. I'm too weak and in too much pain. I can't eat at all, yesterday I had one small piece of bread and it was too painful so I couldn't eat anything else. When this was mentioned to the ER doc, he said I didn't look dehydrated and since I was coherent it wasn't an emergency.

I've lost so much weight and continue to lose lots every week. I feel that I am just wasting away. There aren't really any private healthcare options here since reflux is sort of a specialized field and I'm clearly such a complex patient. I'm sort of forced to try to deal with my surgeon now. The ER doc said too, no other doctor will really touch me since I'm so recently operated on.

My mother and I are desperate and have tried everything with no results. Today I called the surgical ward where I was hospitalized to see if they will admit me again, if there's some other surgeon there who can deal with it until my surgeon comes back hopefully next week. I did meet a few other surgeons there for rounds and they were pretty good at face value. Talked to a good nurse, and she was going to see what the doctors there said. Usually they do not admit patients that way, but she was sympathetic and would try.

I am not a fan of that place or my surgeon but honestly where we were yesterday was worse and I am desperate. At least my surgeon understands the disease. I don't believe any treatment I've received there is wrong or inappropriate, even though I've not been pleased with how exactly things have gone down. Every test I've had and treatment I've received has been the gold standard tests and treatments available, even though they haven't always worked.

Here's hoping... I'm just completely desperate at this point and cannot even see a future for myself beyond this pain.

ETA: A surgeon who saw me briefly post-op was available when I called and is ordering an emergency CT scan for me today. He was sympathetic and concerned. Hopefully this gets the ball rolling.

Last edited by Izzie; Yesterday at 04:12 AM.
Yesterday, 12:59 PM   #13326
MissLeopard83
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MissLeopard, Iím so glad that your new doctor is so helpful! I know how exhausting it is having to explain everything to a new doctor. And then you never know how theyíre going to react.....will they even believe you? But this doctor sounds like a great one! Can you have her visit my town and be my doctor too? Keep us updated on your upcoming appointment. I feel like more answers are on the horizon for you!
I felt so relieved when I left and felt attended to. I felt like all the time and effort I spent researching doctors covered by my insurance paid off. I won't have to see her more often than every 6 months (unless I get sick) but it's so important to have a PCP coordinating your care. I have so many specialists - endocrinology, gastroenterology, gynecology, allergy/immunology (though, I'm no longer going for allergy shots), psychiatry, and, soon, rheumatology - that I'm getting regular care. I might also see either an orthopedist and/or pain management specialist for my chronic pain since my hips and neck are just so sore all the time. The Flexeril is helping, but I can only take it when I'm home since it knocks me out.
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Yesterday, 01:37 PM   #13327
my little penguin
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Missleopard83
There is Spondyloarthritis which is not AS
But still arthritis of the joints
Ds has the juvenile version

http://www.spondylitis.org/Types-of-Spondylitis

There are versions associated with Crohns
And undifferentiated spondyloarthritis

Good luck

Izzie can you try your pcp (general doc )?
Do they have an after hours to call?
A surgery nurse ?
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Yesterday, 02:02 PM   #13328
Maya142
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That is what I was trying to explain - MLP did it better . Axial spondyloarthritis is much more common. AS is a specific type of SpA and is only diagnosed when there is a certain amount of damage to the SI joints. Damage can take 7-10 years to develop, though of course, it can happen faster (took 3-4 years for my younger daughter who has severe AS). Some people with SpA progress to AS and others do not.

SpA is much more common in women than AS is. It is still arthritis - can involve any joint but the SI joints and hips are commonly involved.

Red flags for inflammatory arthritis would be morning stiffness. Stiffness and pain that gets worse with rest and better with activity. If peripheral joints (joints other than the spine - such as fingers, knees, ankles etc.) are involved, you would usually see some swelling and warm joints. Onset of the pain is before age 45 in most cases - in the early to mid 20s is most common.

However, most of the time, lower back pain is NOT inflammatory. It is often osteoarthritis or degenerative disc disease in adults. But you would need an MRI to be sure.
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Yesterday, 02:53 PM   #13329
MissLeopard83
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That is what I was trying to explain - MLP did it better . Axial spondyloarthritis is much more common. AS is a specific type of SpA and is only diagnosed when there is a certain amount of damage to the SI joints. Damage can take 7-10 years to develop, though of course, it can happen faster (took 3-4 years for my younger daughter who has severe AS). Some people with SpA progress to AS and others do not.

SpA is much more common in women than AS is. It is still arthritis - can involve any joint but the SI joints and hips are commonly involved.

Red flags for inflammatory arthritis would be morning stiffness. Stiffness and pain that gets worse with rest and better with activity. If peripheral joints (joints other than the spine - such as fingers, knees, ankles etc.) are involved, you would usually see some swelling and warm joints. Onset of the pain is before age 45 in most cases - in the early to mid 20s is most common.

However, most of the time, lower back pain is NOT inflammatory. It is often osteoarthritis or degenerative disc disease in adults. But you would need an MRI to be sure.
I have so much to learn about the different types of arthritis and inflammation. I am trying to pay more attention to my symptoms and, yesterday, I noticed that I woke up with hip pain and it was pretty bad but it got better if I moved around. I came home and it got worse again. So, I'll have to remember to tell that to the rheumatologist next week. Still no warm joints but my right hip was painful to the touch yesterday. I took some Advil this morning (Tylenol does NOTHING) and rubbed Biofreeze on it which helped some, but it's still sore.

I got pretty annoyed with my mom a little while ago. I've had a stressful week at work (I work full-time) and wanted to just relax today so I can recharge and, when I told her my hip was bothering me, her response was, "You have too many ailments. I think you need to lose some weight and exercise more." When I replied that my hip hurts too much, she's like, "If I can do it with my chronic pain, you can do it." I got so frustrated with the lack of support, I literally closed my bedroom door and said, "I'm not listening to this..." It is so rude! She does not work and stays home QUITE A BIT but I don't tell her she needs to get out more or exercise more - that's her choice, not mine. Why is it that she feels the need to tell me how to manage my pain and discomfort? I'm definitely not OK with that. UGH! My depression and anxiety are doing so well but my physical body is not cooperating with me - that's why I'm seeing a doctor to see what can be done so I can get back to exercising!
Yesterday, 02:55 PM   #13330
Maya142
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When you say your hip hurts, is it on the outside? Is that where it hurts to touch?
Yesterday, 04:16 PM   #13331
MissLeopard83
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When you say your hip hurts, is it on the outside? Is that where it hurts to touch?
It was sore inside and outside, but there was like pain around the hip, too, because of sitting all day which caused more inflammation. I've already been diagnosed with greater trochanter bursitis but the pain is becoming more severe and is different, if that makes any sense. Before, it would just hurt due to changes in weather or during my time of the month. Now that I'm on continuous hormones for my ovarian cysts, I'm no longer getting menstrual periods, so I'm pretty sure this is not bursitis only.
Yesterday, 04:36 PM   #13332
Maya142
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That does sound like bursitis pain, especially if it is sore to touch. It may not be joint pain - there are a lot of ligaments and tendons in that area that can also cause pain.

Fibromyalgia may be something else to talk to the rheumatologist about, particularly if you have IBS (IBS and Fibromyalgia are a common combination).

Pain around the hip could be SI joint related or could be muscular.

True hip pain - pain coming from the hip joint - is felt in the groin. However, psoas tendonitis can also cause pain in the groin.

I hope the rheumatologist can give you some answers. You will probably need imaging to tell if this is some type of inflammatory arthritis or osteoarthritis/degenerative disc disease because the treatments are very different.

I would log your pain for the next week - what makes it worse, what makes it better. Are there specific times of the day when you are feeling better/worse. If you have stiffness how long does it last - that kind of stuff.

Exercise is actually one of the best treatments for chronic pain. I know it's REALLY hard when you are hurting, but gentle exercise helps. Things that are low impact are best - biking or swimming. Even when my daughters are flaring, their rheumatologists encourage them to exercise.

Weight loss can actually also make a big difference to joint pain - again, it is really hard to do when you're hurting. But the rheumatologist can probably start you on a prescription NSAID which should help with some of the pain until you figure out what is going on. Then if you feel better, it should be a lot easier to exercise.
Yesterday, 05:35 PM   #13333
MissLeopard83
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That does sound like bursitis pain, especially if it is sore to touch. It may not be joint pain - there are a lot of ligaments and tendons in that area that can also cause pain.

Fibromyalgia may be something else to talk to the rheumatologist about, particularly if you have IBS (IBS and Fibromyalgia are a common combination).

Pain around the hip could be SI joint related or could be muscular.

True hip pain - pain coming from the hip joint - is felt in the groin. However, psoas tendonitis can also cause pain in the groin.

I hope the rheumatologist can give you some answers. You will probably need imaging to tell if this is some type of inflammatory arthritis or osteoarthritis/degenerative disc disease because the treatments are very different.

I would log your pain for the next week - what makes it worse, what makes it better. Are there specific times of the day when you are feeling better/worse. If you have stiffness how long does it last - that kind of stuff.

Exercise is actually one of the best treatments for chronic pain. I know it's REALLY hard when you are hurting, but gentle exercise helps. Things that are low impact are best - biking or swimming. Even when my daughters are flaring, their rheumatologists encourage them to exercise.

Weight loss can actually also make a big difference to joint pain - again, it is really hard to do when you're hurting. But the rheumatologist can probably start you on a prescription NSAID which should help with some of the pain until you figure out what is going on. Then if you feel better, it should be a lot easier to exercise.
I was diagnosed with fibromyalgia by my former PCP - 2 PCPs ago - but my insurance does not cover her, so I can no longer see her. I try to do some stretches since my muscles can get pretty tense and, when I do hip/leg stretches, it hurts quite a bit in my hamstring area. Most of the pain is on the inner part of the hip, but it sometimes radiates to the outer thigh and buttock area. I've learned that pain from laying on the hip is a symptom of bursitis, so I know what that is caused by. I read that injections into the bursa can help when NSAIDs are not enough, so I'm not sure if that's an option, but I'm going to discuss it with the new doctor.

Anyway, the weather outside is changing again because we have another cold front moving thru and my body aches all over (I hope it's just from the weather and not me getting sick; I had a flu shot in November). I'm probably going to take a shower soon because that always makes me feel better - feeling clean and the warm water help quite a bit.
Yesterday, 06:23 PM   #13334
MissLeopard83
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Well, I took a shower and did some hygiene things like clip my nails, putting lotion on, fixing my hair (it's still wet though, so I have to wait for it to dry), putting on clean clothes, etc. I feel much better. The warm water definitely helped - sometimes, I just like to stand underneath it and let it hit the sore spots. I used to hate heating pads, but now I love them. I even used the heated seats in my car this week to help my hips which felt really good. Now, I'm going to watch some TV, eat dinner, and probably go to sleep later.
Yesterday, 06:47 PM   #13335
Maya142
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Stretching is definitely good but aerobic exercise is also necessary for chronic pain. My daughters both are told to do half an hour of exercise a day. For the younger one, that is biking or walking. For the older one, usually going on the elliptical. When they are really flaring, they take it easier, but they still try to do it.

They also both try to swim once or twice a week.

Body aching all over sounds a lot more like fibromyalgia than inflammatory arthritis. But it could also easily be both or neither. I'm glad you will be seeing a rheumatologist soon.

An injection for bursitis is usually very easy and done in the office. My daughter had one and didn't find it pain. They inject a steroid. It helped her a LOT.
Yesterday, 08:41 PM   #13336
Izzie
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Had a CT scan today that showed no abnormalities. They do however clearly see acid irritation at the back of my throat. So I am still refluxing. The cause has yet to be determined. The likely explanation is probably that they made the wrap too loose.

Will be in contact with my surgeon on Monday. Meanwhile, suffering with pain and feeling the psychological toll this is starting to take.
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