I have an undiagnosed medical condition... lots of Joint Pain

@koalatbs (2229)
United States
May 8, 2008 9:00pm CST
Does anyone else have extensive joint pains in most of your body? If so, what, if anything, have you been diagnosed with? I have been suffering for just over a year now mainly with joint pain. I also have numbness in my feet & legs (mainly right sided). Last summer I needed help to even walk. I am much better now, but that is only because I take it easy. I do not work anymore and haven't seen last summer. I am able to only do basic household chores and shopping, etc. But, I really need to be careful and stop when I begin to hurt too much otherwise it gets pretty bad. I have other symptoms too and my neurologist says he is 50% sure I might (or might not) have multiple sclerosis. I am seeing a Rheumatologist in 2 weeks.
4 people like this
15 responses
@wickedangel (1636)
• Dominican Republic
9 May 08
Oh Koala I'm sorry to hear of your symptoms and pain, how devastating for you. It must also make you so tired all the time. I have painful joints sometimes but I think that is more arthritis that is kicking in (probably from too much typing and standing on my feet all day, waitressing!) I try and take Omega3 which is good for your joints, some swimming may also help you as it will take the weight off your joints. Numbness in your feet can either be bad circulation or a trapped nerve. I think you are doing all the right things, taking it easy and seeing the right sort of doctors. Good luck honey.
@MsTickle (25180)
• Australia
9 May 08
You might find fish oil of benefit to your joints koala.
1 person likes this
@koalatbs (2229)
• United States
9 May 08
Thanks wickedangel - I never knew how much joint pain could hurt and how debilitating it can be until I started experiencing it myself. I will look into the Omega3 online to see what it says. It might be good if I began taking it. I take a multi-vitamin on and off and I was taking glucosamine (Move Free) but I ran out & it is sooo expensive. I will have to buy another bottle when I get a little extra cash. Thanks for thinking of me.
1 person likes this
• Dominican Republic
11 May 08
Hi Koala, I tried to respond to this yesterday but the connection went down and so did the electricity quite a few times so I gave up. I looked up a couple of links on the internet to send to you re: places where you can buy glucosamine relatively cheaply. Unfortunately I have lost all that info. But if you look it up you might be able to find a site and they can send you some. My BF used to live in the States so he used to buy loads of vitamins - he mentioned GNC. Our electricity is going to be cut off again in 3 mins (yes, they actually gave us a warning this time!) so I am dashing this off. Good luck honey and I will look it up again when I get the chance.
1 person likes this
@liquorice (3887)
13 May 08
Hi koalatbs, sorry to hear about your pain and the stress of not knowing what it is. I went through joint pains and strange joint sensations for years until finally in 2001 the doctor agreed to send me to a rheumatologist. Just from looking at me he could tell that my joints were very loose, indicating a problem with my ligaments. He asked me to do various simple movements and concluded that I had hypermobility syndrome. This is a connective tissue disorder, which is basically a weakness in the collagen, which makes up the ligaments and other connective tissue. This results in joints not being properly supported, slight or not so slight dislocations, joint pain and muscle weakness, (amongst other symptoms). If you think this sounds a bit like what you've been experiencing then it might be worth looking at the hypermobility syndrome website www.hypermobility.org While there's no cure, this syndrome can usually be improved with physiotherapy. Lots of people who have hypermobility syndrome also have fibromyalgia. Of course your rheumatologist will hopefully be able to tell whether you have this, but I just wanted you to have heard about it in case it rings any bells. I hope your appointment goes well and they can help you.
2 people like this
@koalatbs (2229)
• United States
13 May 08
Hi liquorice - Thanks for the reply. I don't think hypermobility syndrome is what I have but I sure do hope the rheumatolgist can help discover what is wrong with me. My appointment with him is still 2 1/2 weeks away! Ugh! I did take a look at the website you suggested. I reason I do not think it is what I have is because I have never been very flexible. Somewhat flexible but not overly. I will let you know what I find out. Hopefully, I will find out SOMETHING! LoL! I am glad you were finally diagnosed and I hope you are finding some relief since then. Take care.
1 person likes this
@freak369 (5113)
• United States
9 May 08
I have joint pains from weight training and power lifting; I also was diagnosed with a mild form of Restless Leg Syndrome. The joint pains can get really bad, weather changes usually mean a bit more than usual. My doctor said that there is some new information about long term insomnia and joint pain which is something that I definitely suffer from.
1 person likes this
@koalatbs (2229)
• United States
9 May 08
Hi freak369 - I am sorry to hear about your joint pains. It can really be frustrating as I am sure you know. Since your pains are from weight training and power lifting you might benefit from a chiropractor. Have you ever been to one before? My mom used to work as a receptionist and assistant for many years and our whole family swears by them now. I probably would have never gone to see one before if she hadn't worked there. She has been retired for quite a few years now but the last chiropractor she worked for still gives all of her family members discounts and my mom gets her treatment for free! She brings him cookies every now and then though (lol). :)
1 person likes this
@AmbiePam (85975)
• United States
9 May 08
I sure hope you do not have MS. I have some of the same symptoms, and I was diagnosed with fibromyalgia. There are many more symtopms, but it is varied, and not everyone experiences the same ones, or all of them.
@AmbiePam (85975)
• United States
9 May 08
The site www.fibrohope.org is a good place for more information. Fibromyalgia is so hard to diagnose. Even after I was diagnosed I had one family physician say it wasn't even a real disease. He was not my doctor after that. I was diagnosed by a rheumatologist. Some of my symptoms are knots in my shoulders and back, occasionally itchy skin that is caused by no known reason, extreme fatigue, and insomnia. My mother also has it, and she has most of my symptoms, with the exception of the itchy skin. She does have one symptom I don't have. She often gets the sudden urge to run to the bathroom. Often times people with fibromyalgia suddenly get the urge to urinate, and have to make a beeline for the bathroom. It's not like you need a diaper, but it does make it uncomfortable. Another woman I know who has fibromyalgia started losing her hair little by little. It didn't fall out all of a sudden, it just got very very thin. This is just some of the info I have, but I hope that site can tell you more. Whatever it is, I hope you get better!
1 person likes this
@koalatbs (2229)
• United States
9 May 08
HI AmbiePam - Sorry you have fibromyalgia. I have considered that I might have fibro myself, but I don't know. As you said, I have a lot of the same symptoms, but my symptoms also are similar to many other diseases as well. If you don't mind my asking, how were you diagnosed? Also, what other symptoms do you have? I would appreciate any information & advice you can give me. Thanks in advance. Hope you have a terrific weekend!
1 person likes this
• United States
16 May 08
I would definitely have the doctors do a complete work up on your symptoms. Another thought could be RSD. My son has something called Reflex Sympathetic Dystrophy. He is on mylot as "ubuntujason". He has started a website at usarsd.org regarding RSD. It mimics MS a lot and is often misdiagnosed. It generally occurs after an injury such as a sprain or something. It is also similar in ways to fibromyalgia. My son was tested also for all sorts of other diseases. Praying for the best for you!
1 person likes this
@koalatbs (2229)
• United States
16 May 08
I am sending your son a friend request now. I will also check out Reflex Sympathetic Dystophy. That is something I have not heard of before and I have heard of many that have my symptoms. Thanks again!
@fury2525 (139)
• United States
18 May 08
koalatbs, There are other illnesses that effect your joints besides the one your doctor said. As for myself, I have severe osteoarthritis in my knees and hips. And yes it is very difficult for me to walk and especially go up steps. I have chronic fatique syndrone (which most docs dont accept), and just been diagonized with fibromyalgia, which for me is so bad i want to scream at times, and i have nothing to take for it. Problems in legs could also be p.a.d. pulmanary artery disease. A very good site to check out is www.webmd.com As for me id get a second opinion. Good luck. Lish
1 person likes this
@koalatbs (2229)
• United States
19 May 08
Thanks fury2525. I am terribly sorry about your medical issues. I hope you can find some relief. How were you diagnosed with fibromyalgia and what kind of doctor gave you your diagnosis? I have visited WebMD before but I will check it out again to learn more about pulmonary artery disease. Also, what kind of doc diagnosed your CFS? Thanks a bunch. I will let you know what I find out after I see the rheumatology specialist next week. I hope he can help me.
@koalatbs (2229)
• United States
21 May 08
Hi fury2525 - What is a needles test? I have never heard of it before. I will look into taking a questionnaire test online for different conditions. That is a good idea. The doctors I have been seeing so far though do not seem to like it when I mention anything I have read on the internet when it comes to my symptoms and possible diagnoses. It really makes me mad because my doctors have not been helping me and have not come of a decision on any diagnosis, yet whenever I ask questions about "could it be this or that", they seem annoyed. I will let you know what I find out next week at my rheumatology appointment. Hopefully anything!
@fury2525 (139)
• United States
20 May 08
well where i live in ky, i was first diagonized with cfs at a place called primecare. It's a regular doctors clinic with real licensed doctors. And as far as the fibromyalgia it was diagonized at the free clinic by a volunteer doctor who is a family doctor in town, he asked me questions about the pain, and also tested the strength in my hands. I also have carpal bad from my hands to my shoulders. I was only found out from that by a nuerologist after i was in a car accident. The stupid er doc ( which i kept getting all the time) would only do one test and say nope you dont have it. proved her wrong.I did the needles test and not a fun thing to do. If you type in your type of illness or watch tv they tell you what sites to go to, where they have a questionaire to fill out to take with you , cause for me i have a hard time talking to doctors, males especially. anyways you take the filled out questionare with you and give it to the doctor and hopefully he will have enough sense to figure it out, that yes something is wrong with you. And that you need help.
1 person likes this
@winterose (39887)
• Canada
9 May 08
sounds like you may have fibromyalgia, that is what I have and many other people as well. Apparently it does no show up on common medical tests, like blood tests and exrays.
@winterose (39887)
• Canada
9 May 08
my doctor sent me to a arthritis specialist, he took blood tests, they all came back okay, he asked me my symptoms, and asked if I had trouble sleeping, where the pain was, he touched points in my body and asked me if it hurt and said, it was fibromyalgia. Not ever doctor believes this disease exists that it is all in our heads so you have to get a good doctor.
@koalatbs (2229)
• United States
21 May 08
I know exactly what you mean winterose... about some doctors acting like the pains are all in our head. It is so frustrating and annoying. It really aggravates me to no end when I know that it is not in my head, but sometimes I second guess myself and think "maybe it is". But, I really know it is not.
@koalatbs (2229)
• United States
9 May 08
Hi winterose - How were you diagnosed with fibromyalgia? How did your doctors decide that is what you have? I am very frustrated with my doctors. My neurologist just said we have to wait to see if I develop any other symptoms.
1 person likes this
@TerryZ (22076)
• United States
9 May 08
Im so sorry to hear your having so much pain koalatbs. I have been living with pain for months now. Im going in for surgery this monday and hopefully this will take care of my pain. I have a herniated disc in my neck. And just a couple of years ago I had the same operation for disc above the one that just herniated. I have disc degernation disease. So yes I do know pain. I really hope you get some answers and start to feel better. Keep us informed. Hugs!
@koalatbs (2229)
• United States
9 May 08
I wish you luck for your neck surgery on Monday TerryZ. I am sorry you have to go through that procedure. I hope it helps you feel better. Thanks for thinking of me and hopefully my doctors will figure out what is wrong with me soon. It is getting extremely frustrating not knowing. Take care.
@lucy02 (5016)
• United States
20 May 08
I have some joint pain but I am older than you and it runs in the family....probably arthritis. The symptoms you have are symptoms of MS. How long before you seen the rheumatologist now?
@lucy02 (5016)
• United States
20 May 08
Oh okay, you go next week. I should have read the response above me.
@koalatbs (2229)
• United States
21 May 08
LoL - yes, I see the rheumatology specialist this coming Tuesday, the 27th at 9am. Finally! I will let you know what I find out... if anything. I do think some of my pains, especially in my hands are from arthritis because I have experienced mild pain in them for several years. However, I do think that whatever condition I have currently (whatever that may be!) is making the pain worse.
@anniepa (27955)
• United States
22 May 08
Since you say you have joint pain I wouldn't be surprised if you have arthritis, or possibly as someone else suggested fibromyalgia. The numbness could also be caused by a problem with your back; I have four herniated discs and it causes numbness in my foot and leg and also on one side of my back. I sure hope you find out what's causing your pain and get help for it soon because I know it's no fun to be in constant pain. Annie
@koalatbs (2229)
• United States
25 May 08
Hi Annie - Oh, I am very sorry about your pain and numbness due to your herniated discs. That must be very painful. What kind of treatment, if any, do you get for that? I will be seeing a new doctor this week, a rheumatologist, for my joint pain. I hope he can help discover what is wrong. After the bone scan that I had done a few months ago I was told that I have mild arthritis. If this is what "mild" arthritis feels like then I hope it doesn't get worse! I do not think my only problem is arthritis though. I know it gives me some pain in my hands & fingers but the other pain I get is different, plus the numbness. Wish me luck at my appointment this Tuesday. I will let everyone know what I find out. Thanks again.
@Modestah (11179)
• United States
23 May 08
I have joint pain - especially in my ankles - I have not been diagnosed but when I went to the ER with the torn achiles tendon the doc said I was full of arthritis... so I imagine that is that. I have a lot of foot pain, especially if I do any walking right now my heel is excruciating me as I was out for 3 hours tonight. I do not have the strength yet to put my foot to the ball and bear weight so it all comes down on my heel plus have plantar fascites. joint pain can also be lyme disease and fibromyalgia
@koalatbs (2229)
• United States
25 May 08
Hi Modestah - I also have plantar fasciitis and heel spurs. They hurt very bad. Sometimes I think I would prefer to crawl across the floor to avoid the pain. I need to do this more often but if you freeze a water bottle then put it on the floor in front of you when you are sitting down (while watching TV or something) then roll it back & forth under your foot. It will help some. I also wear Crocs shoes. I know they are ugly. I hated them at first, but they help the pain tremendously. The Crocs are practically the ONLY shoe I wear. Of course, when going out and I have to wear a nice outfit I struggle through the pain for a few hours in other shoes. Also, the podiatrist I saw who diagnosed my heel spurs & plantar fasciitis told me never to walk barefoot. Always wear something on your feet that has some support. I even slip into my Crocs when I wake up in the middle of the night to go to the bathroom. I have gotten cortizone injections twice in my heels. It did help quite a bit for awhile. But, I think I am going to need it done again soon. Have you ever seen a podiatrist? It might help if you can see one. I have a lot of ankle pain too, especially when my heel spurs are acting up.
@dinxcarin (595)
• Singapore
22 May 08
Sorry to hear about your joint pains. Wish I could help but I cannot..I used to have bad migraine.It really sucked the entire life out of me.I went to pain relievers to doctors but all they offered me was just temporary relief. Right now, miraculously my migraine is gone. I want to help you too. Just say so..and then I will help you get there. That's all I can offer. You don't need to spend money or do anything. It's just your faith. Let me know ok?
@koalatbs (2229)
• United States
25 May 08
Thank you dinxcarin - I appreciate your care and concern regarding my health. I am glad you do not have the migraines anymore. That must have been very painful for you. Thanks again and wish me luck at my doctor's appointment this coming Tuesday when I see a rheumatologist for the first time. I hope he can help discover why I have so much joint pain all of the time.
@se7enthbird (8307)
• Philippines
9 May 08
i had a problem with my joints a year ago and i went to a doctor and he ask me to have my blood check. specially for uric acid. so from there i found out that i have gout. he gave me meds to drink and told me to stay away (for the mean time) from foods that can make my uric acid go higher. the first no no are beans and legumes. anything that is made from beans and legumes. check this site and know ore about it. yours maybe like gout. http://www.rheumatology.org.nz/nz08003.htm i hope i copied it right.
@koalatbs (2229)
• United States
12 May 08
Hi se7enthbird - Thanks for replying. I'm sorry you are suffering from gout. Thanks also for the website information. I just looked at it a minute ago. I do not think it is gout. I do not get inflammation or redness around my joints... just lots of pain and stiffness. I wished my doctors would hurry up and find out what it is because I am getting extremely frustrated.
@Gollywog (1092)
9 May 08
I feel sorry for you so much pain at your young age.I have arthritis in all my joints plus disc problems, I am in constant pain and need to keep mobile as much as I can, otherwise I sieze up? The hot weather is very good for the joints so I sit out in the sun, when there is any lol.Please let me know what the results are, I hope they are good. Keep happy.
@koalatbs (2229)
• United States
9 May 08
Hi Gollywog - I am sorry to hear about your joint & disc problems. I am hoping my rheumatology appointment in a couple weeks can help shed some light on what it is that I actually have wrong with me! I have been having this for over a year and getting really annoyed to say the least. Thanks for thinking of me. Hope you feel better. Have a nice weekend.
@Gollywog (1092)
9 May 08
Well you will have your mind put at rest when you get the results, I hope every thing will be good for you.
@GardenGerty (157865)
• United States
9 May 08
For joint pain my doctor and my chiropractor both have me taking mega doses of B-6. I would ask your neurologist, first, though, as it can cause nerve damage. I hope they figure it out soon. If it is something a rhematologist can help, then it is not MS, is it? Good luck friend.
@koalatbs (2229)
• United States
9 May 08
Thanks for reminding me to take my multi-vitamin GardenGerty! I will ask about B-6 next time I see my one of my doctors. I requested the referral to see a rheumatologist. My primary doctor nor neurologist has done anything to help me and can't seem to figure out what is wrong so I made the request since most of my pain is in my joints, I figured why not try seeing a specialist in that area. I just want to check out any & every avenue I can to try to figure out what is wrong. Thanks again.