Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I am a 42 y/o mother of 3 who was finally diagnosed with Secondary Intracranial Hypertension 2 years ago. For those of you who may not know what that is...basically for unknown reasons my body produces more cerebral spinal fluid than it can drain off. This excess fluid literally squeezes my brain and spinal cord causing excruciating daily headaches...worse than the worst migraine. It also causes back pain, cognitive function trouble, blurred vision, etc. If left untreated it can lead to blindness.
Two years ago, after repeated lumbar punctures (over 20 in a 6 month period), I finally had brain surgery to have a VP shunt put in to drain the excess fluid, but, this has done little to help because apparently I have a CSF leak. Essentially a hole in the temporal lobe of my skull from where I suffered from high pressures for so long. This leak deregulates my pressures. Normal pressures are between 100 to 180. Before surgery, my pressures were at 400. Now, they can range between 240 to 280. There is no cure for my disease and unlike those with the primary form of the disease I am already thin so weight loss is not the issue.
Problem is we don't know what the primary cause is. IH has been linked to RA, MS, Lupus, etc. When I wake up in the mornings my body hurts all over despite being on daily pain meds. When I step out of bed I can barely move and even the bottoms of the soles of my feet hurt terribly. My elbows, knees, joints in hands ache. If I try to do simple things like do my daughters hair or clean or if I go shopping for too long, I get horrific burning pain in my upper neck and back. Anymore, housework, gardening, shopping, etc. for even a couple of hours can land me in bed for several days if not a week. These simple things make me feel absolutely fatigued, exhausted, and obviously leave me in enormous pain. Many times I'm left weak. Barely able to even lift a dinner plate from the kitchen cabinet. While IH'ers do suffer some general aches and pains...my experience is a bit extreme even for IH. When I get sick with a cold...it becomes pneumonia. When I get the stomach flu...I end up in the ER. So my immune system seems low.
My aunt has RA and I've spoken to her about what I'm dealing with and she said she believes it's very possible that I may have RA, but, I know very little about it. I've had a positive ANA test with high titers and my bloodwork obviously shows a great deal of inflammation. And, yet, my general practitioner can't seem to figure this out. I live in NY (Rochester) and my neuro docs are in Columbus, OH. NY state has the lowest paid doctors and it shows because they seem to know very little about how to diagnose this type of stuff. So frustrated.
I'm in pain. Depressed and at a loss. Can anyone offer any input?
Two years ago, after repeated lumbar punctures (over 20 in a 6 month period), I finally had brain surgery to have a VP shunt put in to drain the excess fluid, but, this has done little to help because apparently I have a CSF leak. Essentially a hole in the temporal lobe of my skull from where I suffered from high pressures for so long. This leak deregulates my pressures. Normal pressures are between 100 to 180. Before surgery, my pressures were at 400. Now, they can range between 240 to 280. There is no cure for my disease and unlike those with the primary form of the disease I am already thin so weight loss is not the issue.
Problem is we don't know what the primary cause is. IH has been linked to RA, MS, Lupus, etc. When I wake up in the mornings my body hurts all over despite being on daily pain meds. When I step out of bed I can barely move and even the bottoms of the soles of my feet hurt terribly. My elbows, knees, joints in hands ache. If I try to do simple things like do my daughters hair or clean or if I go shopping for too long, I get horrific burning pain in my upper neck and back. Anymore, housework, gardening, shopping, etc. for even a couple of hours can land me in bed for several days if not a week. These simple things make me feel absolutely fatigued, exhausted, and obviously leave me in enormous pain. Many times I'm left weak. Barely able to even lift a dinner plate from the kitchen cabinet. While IH'ers do suffer some general aches and pains...my experience is a bit extreme even for IH. When I get sick with a cold...it becomes pneumonia. When I get the stomach flu...I end up in the ER. So my immune system seems low.
My aunt has RA and I've spoken to her about what I'm dealing with and she said she believes it's very possible that I may have RA, but, I know very little about it. I've had a positive ANA test with high titers and my bloodwork obviously shows a great deal of inflammation. And, yet, my general practitioner can't seem to figure this out. I live in NY (Rochester) and my neuro docs are in Columbus, OH. NY state has the lowest paid doctors and it shows because they seem to know very little about how to diagnose this type of stuff. So frustrated.
I'm in pain. Depressed and at a loss. Can anyone offer any input?
After reading what you are going thru, I can understand why you ar debpressed. Anyone would be depressed trying to handle all of this. RA causes pain and stiffness, and swelling ( but not always), especially in the morning. When I first started having problems, I remember getting out of bed in the morning and trying to walk on feet that seemed to have lost their "spring" if you know what I mean. If I were you, I would make an appointment with a rheumatologist. Write down yur symptoms, so that you can remember to tell him/her everything. If possible, bring copies of your blood tests with you. I don't know if you have RA or not, but it does sound as though you have something autoimmuen going on, sweetie. Don't give up hope. Come back and let us know what you find out and how your are doing, and please feel free to ask questions and post anytime you would like. This is a supportive coumminty.
Best Wishes,
V
Please know that we are all pulling for you.
Hugs,
Frances
Thoughts and hugs!
Kellie
Cakeicer: My CSF leak is a little different than the type of leak that you get from a spinal in that the excess fluid runs out of my temporal lobe and normally builds excess pressure around my left jaw and neck. My shunt will turn off at these times and my pressures normally get pretty high and sometimes the CSF will run out my nose. In fact, this leak puts me at risk for developing meningitis. Doctors say it's not if I'll get it, but, when so we're trying to get me into an ENT surgeon to see if he can help. I'll have trouble talking and eating due to jaw pain and headache...but, it's not like a low pressure headache stemming from a spinal leak. (Although I've had low pressure too and those are actually just as bad if not worse.) Interesting that you mentioned muscle spasms...Is that part of RA? Because I've had nvoluntary small muscle spasms all over for several years now.
V and Ann: I do have horrible swelling, pain and stiffness especially after doing much of anything. But, mornings are the worst. I'll see if I can get into a Rheumie doc. Thanks.
Imwillget: I'm glad you mentioned dietary changes. Oddly enough, within the last year I've completely lost my appetitite for meats, pasta, etc., and have found that I can really only tolerate fruit, veggies, yogurt and strangely...Peanut butter and Jelly sandwiches. : ) Anything other makes me feel nauseous. I've also started having some trouble in the last 6 months swallowing sometimes when I eat...like food gets trapped. (Scary when it happens) Is that a symptom of RA? I had an upper GI and other GI type testing but, they could find no physical reason for this problem i.e. esophagus isn't narrowed, etc. Also have had lots of UTI's, some kidney pain on and off and most recently occasional chest pain around my heart...feels at times like something is squeezing it and it aches. No MVP, clear echo, etc. Do any of you have these issues? I'm glad you are taking your health into your hands...always good to be proactive. Hope it's helping.
Frances: You are so cute in your pic! : ) Remind me of my auntie! To answer your question I am currently on enough daily pain meds that one would think I should either have slurred speech, be falling all over myself...or for that matter be in a coma. I am on a prescribed dose of 75 mgs. of Fentanyl patch...changed every other day....and...8 mgs. of Dilaudid up to 4 times a day as needed. I also have 25 mgs. of Promethazine for nausea to take when needed. And when crisis occurs and all else fails, I have liquid morphine I can take with Phenergan suppositories...but, I rarely, if ever use that protocol. I can't take meds like Lyrica and Gabapentin or steroids like Prednisone due to their link to causing weight gain which will make my pressures rise. We tried Topamax which helped some but, I had nasty side effects and they had to take me off of it. I've been on the narcotics for a very long time now, and without them I wouldn't be able to function...but, they barely help and when I'm in severe pain they barely touch the surface as most narcotics do when used for any length of time. I'm schedule to see pain doctors for help in December. At 42, it's scary to think my body may never get complete pain relief in the future due to already reaching my plateau of tolerance. We'll see....
And lastly...Kellie: Glad to know I'm not alone...but, sorry we have to share the same experience. It's always nice to belong to a club but, I'd rather belong to a Millionaire's club if you know what I mean. LOL.
I'll try setting up an appt. with an RA doc and keep you posted on the outcome. In the meantime, I'll be praying for each of you. Thank you.
MM3