New Symptoms: Stiff Joints and Sore, Weak Muscles

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changeiscertain

Joined
Mar 26, 2011
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Hello all. I could use some support or words of advice right now. I have recently developed some very scary new symptoms and I'm not sure if they're related to Crohn's, which I was dx'd with in 1998. I haven't been to the doctor because I'm between insurances right now. I guess I just want to see if anybody else has experienced anything like this. I have extremely stiff joints, especially the hips, neck and shoulders. My lower back feels like it's in a vice. My leg and arm muscles are sore and weak. All of this seems to be exacerbated by sitting or lying down. If I'm already up and moving it's not too bad but after sitting or lying down for even just a brief moment it's like everything freezes up. I have to stand very slowly and then stay hunched over for several steps before I can finally stand all the way up. I've been on Imuran for about 2 years and have recently tapered from 4 to 2 a day because I'm almost out and I can't afford to get it refilled. I've also had to taper Colazal from 8 to 4 a day for the same reason. I haven't had to take Prednisone in almost a year. I'm definitely starting to flare through a little while tapering down Im and Co, as far as the amount of bm's per day and cramping and blood involved but it's really nothing I can't handle, especially compared to these other issues I'm having. I'm hoping maybe this is just another manifestation of Crohn's and not something new on top of it :sign0085:
 
Cutting down your meds could certainly trigger an inflammatory response, but only a doctor is going to be able to help you properly troubleshoot and fix this.

You might have to pay out of pocket for a visit. See if they'll let you make payments or something.

It's too bad that in the US we have to choose between medicine and rent, but we do.
 
Hi Muppet. Thanks for your response. I do realize that I would have to see a doctor for any kind of diagnosis. I was just wondering if anybody else had experienced anything similar. Unfortunately, I will have to wait until it becomes an emergency or I get insurance before I can see anybody because I don't have the money for even small payments right now. America is a very scary place to have a chronic illness and no insurance, for sure.
 
Please don't take this the wrong way, but you can barely walk. It's already an emergency. Any more acuity and it could very well be life threatening.

A doctor's consult is expensive without insurance, but an ER visit and emergency resection/admission is WAY more expensive.

I've been where you are. I get it. Still, my advice is to take the hit early.
 
I really do appreciate your advice. But I don't think you understand that I literally do not have cash to walk in somewhere and tell them I can't walk and I need help. I don't have the option to "take the hit early". I would do it in a heartbeat. The only place available is the ER and if I walk into the ER telling them that I hurt all over and I have no insurance they will send me home with pain pills and no tests. I know it's hard for people to really comprehend that American doctors and hospitals would let someone in my condition die before they treat them for free. But it's just the way it is. Without cash, the acuity does actually have to be life threatening. I definitely don't mean any disrespect to you and again, I appreciate your concern and advice and I do understand what you're saying to me. However, I would still be interested in hearing from anybody else who may have or be experiencing something similar.
 
1. the problem with getting up and down and excruciating back pain was, for me, a ruptured disk in my spine. I had to have surgery. Now, this problem had been there for probably at least 14 years, but for whatever reason it suddenly acted up real bad.

2. muscle stiffness and weakness is something I have all the time. in fact, its so bad today that even typing while leaning my arms and hands on the table/laptop is painful and tiring. it's hard to hit all the keys. its hard to pick up my feet. everything feels like it's burning its so tired. yesterday I spent the entire day in bed. the only reason why I'm not today is because I had to drag myself into work. My rheumatologist tells me this is fibromyalgia flaring up.

3. you really need to go to the hospital, and it's going to be expensive :/ this could be a reaction to tapering your meds or it could be something fairly benign albeit overwhelming. you need to at least make sure it's nothing very serious.

do you have free clinics, charity hospitals, or sliding scale clinics near where you live?


edit: Hospitals can't deny you service based on your inability to pay. they have to take care of you. if the hospital near you isn't doing that then something is seriously wrong.
 
No he's right the hospitals only legal obligation is to stabilize and discharge, unfortunately. I'm in the US and I'm in over $40,000 in debt mostly due to illness without insurance throughout my life so don't imagine that I don't know. Sell your stuff. Lie about forgetting your insurance card.
 
really? ugh. I haven't been without insurance for years now, but I had to go to the ER a few times then, and they treated me a fair bit better than just stabilizing and discharging me. Both of these visits were at the same hospital though so I guess it's possible they have a different policy?
 
Some hospitals do charity care of their own volition. In my case I was often treated fairly well, then sent a bill at exorbitant (non-negotiated) rates 3-4x what an insurance company would pay. That's SOP in the US. The system seems designed to kill off the uninsured.
 
yeah the bills I was sent later were ridiculously high. it seems like you get charged twice for everything. the hospital charges you and the doctor pool charges you. it makes no sense.

my wife gets charity care, because she doesn't have insurance and I can't afford to have her on mine. it sucks. I get so mad about the whole US healthcare thing. ugh.

edit to add: I eventually paid part of the bills, had part pulled off via sliding scale, and part forgiven. I'm currently in collections for medical bills again, even having insurance. its so much fun. NOT
 
There are facility charges and professional charges and ancillary charges. You get at least three bills for each visit and the totals are ridiculous.

The insurance co would pay out a single negotiated rate far lower than what they wallop you with.

My family is still suffering from my uninsured period 15 years later. Neither of my kids had even been born yet.
 
Muppet, I'm female. Sorry, I haven't posted much here and wasn't thinking about my gender neutral name :) Thank you so much for your understanding and concern. I'm very sorry to hear about your medical debt. I think you're right that the system is designed to kill off the uninsured. That is definitely what it seems like.
 
Hey Change - Joint pain is a common side-symptom of Crohns, but do some google research and make sure you aren't having a reaction to decreasing your meds.

I had really bad back spasms in my lower back after I was first diagnosed with Crohn's. I was pretty sick and had lost a lot of weight. I was also having horrible leg cramps and muscle fatigue. I figured out that it was a vitamin/mineral deficiency, I think it was magnesium and sodium. I started taking Epsom salt baths and that helped a lot.

Good luck. Hope you can find some insurance soon so you can take care of yourself properly. It breaks my heart to read about you and others that are unable to get the care they need due to our horrible health care system here in the US.

Take care - Amy
 
Many prescription manufacturers offer help if you're having financial problems. Go to their websites to check or look at the links on needymeds.org

In Virginia you can contact your city or county public health to find a free clinic or get medicaid, depending on how it is handled in your area.

If you have a medical school near you, there are always clinics, and there should be a payment scaled to your income.
 
Hi Miss, I am looking into clinics now and there seem to be a few options available to me and I am currently waiting to hear back from Salix for Colazal. I will be getting to the doctor asap. Was really just wanting to know if anybody had experienced these symptoms, in the meantime. Thanks for your help :)
 
I think you'll find people who suddenly cut their anti-inflammatories in half even though it was contraindicated by their condition to be pretty rare. I'm not saying that to mock you but to explain why you probably won't get the answer you're looking for. Finding a way to see a doctor and get your medication back to where it needs to be is paramount here.
 
Glad to hear you're taking steps.

I just hate to see people do without medical care or medications because they don't know help is available, when there is so much help out there. :)
 
muppet said:
I'm not saying that to mock you but to explain why you probably won't get the answer you're looking for.
Click to expand...

The question I asked is if anybody else has experienced what I'm experiencing. You have not experienced it so you have already answered my question for you. I definitely get that you think I'm looking for something that can't be found on this board. But you're not understanding that I'm looking for something that can *only* be found on this board. My only question here is if anybody else on Crohn's Forum has experienced what I'm experiencing. A doctor can't tell me that. Again, I am not looking for a diagnosis here. I'm working on getting to the doctor but in the meantime, I'm simply asking a question that can indeed be answered here.
 
Hi Change
Recently I am experiencing joint pains in my fingers, big toes, elbows and knees.
The fingers joints became really noticeable, quite painful in fact when doing arm and finger exercises at the gym
Shortly I have a GI appointment and intend to ask about it all.
A few months ago I started imuran and had a bad reaction to it. Seems like the joint pain followed shortly after as well as a few other symptoms.
Hope this helps
Trysha
 
Thank you for sharing, Trysha. I am sorry to hear that you're going through that though. I tend to think mine has something to do with Imuran and lowering my dose. Glad you're getting to the doctor and I hope it gets better.
 
Change is Certain - oh my goodness, I sure know your boat sister. After going through my 401k to pay medical bills, rx and such - I had to loose everything, live in a tent to pay off my debts and remain in poverty until I could get state aid - which, in Michigan is approved in October. I had to have zero assests. So from a $48,000 professional income - after 14 years of university to get my Master's - I now live in poverty. There are bonuses but I will speak about some avenues I took before Medicaid was approved. Call your local hospitals and ask which ones have scholarships or grant monies for impoverished people. The social worker at the hospital is the best person to call for this type of information. I had an emergency and the hospital picked up the entire bill for me. Say a prayer and be open to any possibilities because the sources come from the most unexpected places. You can call United Way and they can direct you. You can call your local hospital and ask for the Womens Resource Center and make an appointment or have them give you ideas of where to go. Most importantly - I say this with love because I can hear your frustration, pain and anxiety - please do something before it is not repairable. I waited for two years before I became impoverished due to medical expenses and the Chron's went from less than six inches of ugly, festering, sores to over fourteen inches and the loss of my vision. You're worth it. All my best, Lynne
 
Muppet, I have addressed you every time you have addressed me so there has been no dismissal. However, this will be the last time I address you because I have gone above and beyond to politely explain something to you and you have done nothing but try to tell me what I am looking for and when I disagree, call me rude which I *definitely* have not been, in any way.
 
changeiscertain said:
Hello all. I could use some support or words of advice right now. I have recently developed some very scary new symptoms and I'm not sure if they're related to Crohn's, which I was dx'd with in 1998. I haven't been to the doctor because I'm between insurances right now. I guess I just want to see if anybody else has experienced anything like this. I have extremely stiff joints, especially the hips, neck and shoulders. My lower back feels like it's in a vice. My leg and arm muscles are sore and weak. All of this seems to be exacerbated by sitting or lying down. If I'm already up and moving it's not too bad but after sitting or lying down for even just a brief moment it's like everything freezes up. I have to stand very slowly and then stay hunched over for several steps before I can finally stand all the way up. I've been on Imuran for about 2 years and have recently tapered from 4 to 2 a day because I'm almost out and I can't afford to get it refilled. I've also had to taper Colazal from 8 to 4 a day for the same reason. I haven't had to take Prednisone in almost a year. I'm definitely starting to flare through a little while tapering down Im and Co, as far as the amount of bm's per day and cramping and blood involved but it's really nothing I can't handle, especially compared to these other issues I'm having. I'm hoping maybe this is just another manifestation of Crohn's and not something new on top of it :sign0085:
Click to expand...

I just read your post from 2011 and I feel I am experiencing many of the same symptoms. It started with joint pain, now in my 5th week of back pain- sometimes that vice grip in lower back, which goes down my legs, sometimes middle back has excruciating spasms.

My neck hurts and all the muscles in my shoulder and upper back area. My hands feel a little weak and sometimes legs and arms. Oh and I had pins and needles in arms and legs as well. And numb bum for two days.

Did you ever get diagnosed for your symptoms? HOw long did they last?
I had x-rays and blood work last week and will see my Dr. on Thursday to follow up.

I hope you are doing much better these days :)
 
JoFowler said:
I just read your post from 2011 and I feel I am experiencing many of the same symptoms. It started with joint pain, now in my 5th week of back pain- sometimes that vice grip in lower back, which goes down my legs, sometimes middle back has excruciating spasms.

My neck hurts and all the muscles in my shoulder and upper back area. My hands feel a little weak and sometimes legs and arms. Oh and I had pins and needles in arms and legs as well. And numb bum for two days.

Did you ever get diagnosed for your symptoms? HOw long did they last?
I had x-rays and blood work last week and will see my Dr. on Thursday to follow up.

I hope you are doing much better these days :)
Click to expand...

Thank you. I am doing better. I'm sorry to hear you're having problems. I was eventually dx'd with C. diff after that episode and hospitalized for a week. I never figured out what the stiffness was about. Perhaps just getting older? I'm on Remicade and Methotrexate now and in remission and I still have stiff joints and muscle aches but not like I was back then. I hope you get to feeling better soon.
 
Hi Jo. I am new to the forum and new to Dx. My journey started 9 years ago with numbness in my hands. I was treated by a chiropractor for the next 8 years, the numbness progressing until my hands were numb for most of the day. The numbness then moved to my feet. It got so bad that I couldn't sit on the toilet without my feet going completely asleep. I started having feeling of electricity shooting down my legs from my knee to my toes. The next symptom was that my left foot would not want to take the next step while walking, just a few seconds behind when it should have been there to catch my forward momentum but enough that I would almost fall flat on my face. This began happening at an alarming frequency. At this point I went to a neurologist, who couldn't find anything physically wrong with me. Next I began to have lower back pain just below my ribs and pain in the joints of my feet and my knees. I went through test after test with the neurologist only to find nothing - blood tests, MRI's, nerve conduction studies. Then I started running a fever. I went to an orthopedist, a rheumatologist, back to my family doctor who ordered a CT scan of my abdomen to rule out cancer which found mesenteric lymphadenitis. Then it was onto the gastroenterologist who performed a colonoscopy (3 days ago) and found that I have Crohn's. So that was a long story to get to this point - I have absolutely no GI symptoms that would have indicated Crohn's disease - no diarrhea, no abdominal pain, no blood in the stool, no constipation. The only symptoms I have are the ones that you are currently experiencing. So I think that maybe your new symptoms are a possible flare and not necessarily something new. Hope this helps.
 
used to be able to run said:
Hi Jo. I am new to the forum and new to Dx. My journey started 9 years ago with numbness in my hands. I was treated by a chiropractor for the next 8 years, the numbness progressing until my hands were numb for most of the day. The numbness then moved to my feet. It got so bad that I couldn't sit on the toilet without my feet going completely asleep. I started having feeling of electricity shooting down my legs from my knee to my toes. The next symptom was that my left foot would not want to take the next step while walking, just a few seconds behind when it should have been there to catch my forward momentum but enough that I would almost fall flat on my face. This began happening at an alarming frequency. At this point I went to a neurologist, who couldn't find anything physically wrong with me. Next I began to have lower back pain just below my ribs and pain in the joints of my feet and my knees. I went through test after test with the neurologist only to find nothing - blood tests, MRI's, nerve conduction studies. Then I started running a fever. I went to an orthopedist, a rheumatologist, back to my family doctor who ordered a CT scan of my abdomen to rule out cancer which found mesenteric lymphadenitis. Then it was onto the gastroenterologist who performed a colonoscopy (3 days ago) and found that I have Crohn's. So that was a long story to get to this point - I have absolutely no GI symptoms that would have indicated Crohn's disease - no diarrhea, no abdominal pain, no blood in the stool, no constipation. The only symptoms I have are the ones that you are currently experiencing. So I think that maybe your new symptoms are a possible flare and not necessarily something new. Hope this helps.
Click to expand...

Wow- that is quite a long time to go through all of that and not know what was going on! I am glad they finally got some answers and you can hopefully get effective treatment really soon!

I did go though a similar episode a few years before I was diagnosed with Crohn(due to a perianal abscess and inability to eat my stomach got so bad). I also went to a neurologist and had ct scan and MRI (they thought it was MS) even allergy tests, but all tests were negative. It gradually got better after three months and went away.

I have been on Remicade for three years and doing quite well the majority of the time.

I will see what my family Dr says on Thursday and then possibly book with my GI.

Thanks for your input! I hope you are well soon.
 
UPDATE: I went to my Dr. for the follow up on tests. Blood work was all good. Inflammatory markers were not up so she does not think it's a crohn's flare. I did let her know that when I was at my worst with crohn's at time of being in hospital and getting diagnosed, that my GI said my blood work didn't really show those markers being up.

In the x-rays- I have a slight curve of the spine and a slight slippage of L-5- but this is not new. She did say that could be throwing everything out of whack. She is sending me to chiropractor and a few more blood tests(she said she has to do these tests before deciding to send me to a rheumatoligist)

Overall I am doing better this week. Still have pain in different areas, but not not totally excruciating like before. :)

Oh and she "mentioned" MS, but I said that's what you and other Dr.s thought before but the MRI was clear. And aside from I didn't have the back pain before, my arms and legs were much worse then (2009) with pain and numbness. And I had vertigo. Her response, "It doesn't mean you will never have it" Geez, comforting thanks lol

I will be going for walks on Sat & Sunday and see how I make out compared to last week (which was pretty bad)
 
Wishing you the best. She didn't have to make that remark about it doesn't mean you will never have it.
 

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