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Medical Forum / Diseases and Disorders / Arthritis / April 2006undiagnosed
Hello, This is my first time in a group, so I hope I am doing this right. I am in desperate need of help & info. I am in so much pain & cannot find a doctor to listen, really listen to me!! Several weeks ago I began experiencing dull pain in both of my hips, mostly in bed, I could no longer lay on either side wthout hip pain. Then I began having muscle pain in both of my upper arms. Then knee pain & stiffness set in, followed by ankle pain, especially my left ankle which also swells. Now I am having lower back pain mainly on the left side along with lower abdominal pain just like an ache, enough to know it is ther. I haven't slept in 2 nights because of the pain. I wake up now extremely stiff, with swollen stiff fingers. I am on my feet between 6 & 8 hours a day at work. By the time I come home I can hardly walk, when I sit or lay down I stiffen up. I was suffering also from restless leg syndrome, for which I was perscribed neurontin, which helped. I was also put on naproxen for the joint pain & stiffness twice daily. This did not help. When I told the Doc this, he told me to stop taking the naproxen & to take 3 advil 4 times a day. This does not touch my pain. He felt the naproxen was making my ankle swell. Didn't he listen when I told him my ankle was swelling & that is why he put me on the naproxen? The muscle behind my left knee becomes so tight I cannot bend or straighten it. By evening I no longer walk, I shuffle along. Do any of you have symptoms like mine & if so what is your diagnosis? Is there anything I can do to ease the pain so I can sleep? I hate even going to bed because I know my pain will be worse & I will be even more angry & frustrated that I once again cannot sleep. I fall asleep out of sheer exhaustion, & then only for a few minutes at a time. This has truely taken my life from me, all there is is PAIN! Please help. Thank you for yourtime in reading my lengthy message. Purplem Dear Purplem, Happy Easter. Just to cheer you up. I'm not a doctor, just a mum who has had arthritis for a awful long time. What you have described does sound like what I went through many years ago. What did I do? My doctor sent me to a Rheumatologist specialist who did blood tests and lots of xrays. I was then put on different drugs until we found one that gave my life back again. While we were looking for this wonder drug my family would pack me in bags of frozen peas for about 20mins every morning so I could get up to go to work. The doctor gave me pills to stop the pain at night and make me sleep. I suggest you try your doctor again, if you get no help change doctors. It is important you keep moving, do low impact exercises - you will be in pain so do only what you can. Some people find that certain foods make things worse - I have had to cut down on the sugar, which of course was good for me. Please keepin contact. Gail Please, please see an RD. Our family doctor mean well but a great deal of damage can be done early sometimes with inflam.arth. and it must be controlled. Harv > Hello, > This is my first time in a group, so I hope I am doing this right. [quoted text clipped - 29 lines] > > Purplem purplem, i think many of us can relate to what you're going through. you need to see a rheumatologist asap. there's help for you, but it can take time to find the right medication, and you don't want to sustain a lot of damage while you're waiting. i can't stress this enough: see a rheumy! diane : purplem, : i think many of us can relate to what you're going through. you need to [quoted text clipped - 3 lines] : : diane what type of damage can happen?  SignatureUrbana Lurker Extraordinaire Everywhere there is pain can be degeneration and sometimes where there is no pain. What a person looses in their joints and vascular system is very slow to come back and sometimes not at all and that is what kills us or causes loss of sight or hearing. Harv > : purplem, > : i think many of us can relate to what you're going through. you need to [quoted text clipped - 5 lines] > > what type of damage can happen? PurpleM, I would absolutely see a rheumatologist right away. The symptoms you are describing are common to quite a few different types of arthritis. Diane is right, if it is arthritis it could be damaging your joints. Chronic inflammation erodes your joints almost like an acid. It's painful and it is permanent. Please go and see a rheumy. Good luck to you, and please let us know what happens, Char it can cause hearing loss? how so? I have severe DDD which is at the point of my vertebrae are literally breaking. I've surgery scheduled to have a titanium cage and fusion done. I'm no longer a candidate for disk replacement. SignatureUrbana Lurker Extraordinaire : Everywhere there is pain can be degeneration and sometimes where there is no : pain. What a person looses in their joints and vascular system is very [quoted text clipped - 11 lines] : > : > what type of damage can happen? > what type of damage can happen? > I've surgery scheduled to have a titanium > cage and fusion done. I'm no longer a > candidate for disk replacement. The kind of damage you have had can happen. May I ask how long it took for your spine to break down this badly? What treatment protocol have you been following? I ask because besides my old RA taking a chunk out of my neck my advanced 'steroid-induced' osteoporosis is wreaking heck with the rest of my back. I am beginning to explore some of the options. thanks. johnie : > what type of damage can happen? : [quoted text clipped - 9 lines] : to explore some of the options. thanks. : johnie Hi johnie, I'm not completely sure of how long it took. I first noticed back pain in my late teens, but nothing that a aspirin here or there didn't care for. Then I was in an auto accident when I was 25 and within 6 months I was barely able to walk. I had extreme pain, weakness and numbness. It was found at that time I had severe spinal stenosis at L3-L4-L5 and a disk herniation at L4-L5. My neurosurgeon at that time said when he tested the disk, that it completely spattered throughout my back and it took him an extra 45mins to remove all the splattered material. He did a lamectomy and diskectomy at L4-L5 at that time only. That surgery did good for me for almost 7yrs then I started having terrible pains again. It took me close to another 5yrs to get to a doctor to refer me to the right doctors. Everyone of them before only wanted to give me damn nerve meds, ie: lycra, cymbalta.. I didn't have nerve pain, it was muscle spasms and extreme swelling. I'd seen a Orthopedic who said I had chronic pain syndrome, DDD and spondolisis but wouldn't give me any pain meds and wasn't willing to work with me. Some days I would swell so badly, that I would literally go to a bathroom when I was in public and remove my bra because I wasn't able to breath. It was suffocating me being so tight, because I'd swelled up so badly. I finally was able to get in to see a pain doctor who did give me some good pain meds and I ended up having a series of facet join and SI joint injections which only helped for close to 3-4 weeks. The pain doctor wanted to do a nerve block, but something in me said, no way!! God gave us pain for a reason.. I need to find the source not just block it. I finally got to a RA because I tested possitive for HBL-A27 and he claimed I had Fibro, who knows I might have it, I have Raynauds, IDDM and RA in my hands and knees, but I didn't agree with that and found another RA, she ordered a new MRI, and found there was another herniation along with severe degeneration at L3-L5/S1 and sent me to a Neurosurgeon who then took 2 xrays while I was there and said that because of the degeneration I had worn the bone down to next to nothing and basically I've fractured my back at L4 and now that bone is resting on top of L5 which is rubbing bone on bone and rubbing the nerves together every step I take. I will be 39 next month! I found out that disk replacement isnt for anyone that has issues at more then one level which is one of the reasons I'm not a candidate. Also, my spine is way too deteroated to hold a disk replacement. My spine is very unstable I've been told. I also have some curvature which I saw while I was having the facet injections that so far all the doctors have blown off, saying "yeah, we see it there, it's still nothing to worry about yet." I think "YET!?" Well, I certainly hope you gets some relief soon.. Feel free to piss and moan, we all need to now and again.. if anything we can sympathize with you here. SignatureUrbana Lurker Extraordinaire Urbana, there ya go. Spondyosis can be one of the spondyloarthropathies. It is an auto immune arthritis which can affect the entire body. It is also called ankylosing spondylitis, spondylitis, rheumatoid spondylitis, etc... The hallmark of the disease is erosions or changes of the SI joints. I would highly rec. checking out www.spondylitis.org. Perhaps after checking out the site you could determine if you fit the general description. Since this is a disease that affects more men than women, women are often dismissed and take FOREVER to diagnose. IT took me three years and three different doctors. Now that I finally have a correct diag. and the right combo of medicines, I am back to a mostly normal life. Please ck out the site and good luck to you, Charlene >Do any of you have symptoms like mine & if so what is your >diagnosis? Is there anything I can do to ease the pain so I can sleep? You need to get a proper diagnosis, I suggest you see a Rheumatologist. There are excellent drugs available for inflammatory arthritis, but you need a proper diagnosis first. Rheumatoid arthritis creates profound stiffness and pain but there are over 100 forms of arthritis. You might want to check out this website for more information: http://www.arthritis.co.za/Default.htm You did not say what doctor you were seeing but you need to get a referral to a rheumatologist -- RD for short -- as soon as possible. Finding the right combination of drugs to help is a long process but can't begin until you get diagnosed. A regular internist are often unable to help due to lack of training in the field. There are over 170+ forms of arthritis and that takes a specialist. Glad you found us. I have serum negative rheumatoid arthritis and it took me 15 years to find a RD. Don't wait that long. BTW, if this is a RD you are talking about, time to find a different RD. Someone has to graduate from the bottom of the class and we often find those that do. Sorry you are having to go through this. Duckie > Hello, > This is my first time in a group, so I hope I am doing this right. [quoted text clipped - 29 lines] > > Purplem purplem, first, nice handle. Now like everyone else the most important thing you can do is find a "good RD" and get a "proper DX" so you can slow whatever this is down. Okay? johnie > Hello, > This is my first time in a group, so I hope I am doing this right. [quoted text clipped - 29 lines] > > Purplem |
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