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Sarandipity 07-20-2004 10:16 AM

Re: psoriatic arthritis
Hello! We have a lot in common, we both have kids ages 3 and 7, I have a disc- L5S1 (lower back) which is completely degen. and herniated, I already had the laman. to have it removed. I refuse the fusion they want me to have. My main concern right now is that I have Psoriasis Arthrtis. My doctor is running all the blood tests this week. She put me on Bextra in the meantime. My chiropractor said she has never seen joints as tight as mine. She asked me if there was any arthrtis in my family. I am in pain all the time. When I get up in the morning I just feel like dying. I have to get in a hot bath right away or I cant walk. I take Hyrocodone and Soma at night just so I can sleep. Please share anything you can, meds you have experienced, excercises, do's and don'ts - whatever information you have to share.

My kids know Im in pain all the time. Ever since I was pregnant with my 2nd child, Ive been in this severe pain. It was all pointing to Lupus and I thought it might have something to do w/ arthrtis because It's all over my body.

I want to get well or at least keep the pain under contol. Any information would help.

Strbay:::::: Seems like you have a lot of experience with this too. Please help! Here is my background:

Body structure- small build, muscular, weight 110
Complaint: Severe lower back pain. Mainly right side si joint area, pain radiates towards upper back, down
right leg, and towards the middle of back where L5S1 disc is located.

Date, onset of pain:
April 2001 - (6 months pregnant) gained 57 pounds.
October 2001 MRI- showed L5SI disc degeneration, and left side herniation
December 2001- 1st Chiropractic appt, outcome - relief for 5 hours at best
January 2002- Lame on left side, outcome- no more pain down left side of leg although worsened si joint dysfunction on right side.
March 2002- Continue Chiropractic appts once a week
March 2002- Pool physical therapy
July 2002- Tummy strengthening physical therapy
August 2002- Started seeing Chiropractor twice a week for the next 2 years (until June 2004)
August 2002- Disco gram
September 2002- Steroid shot inside of si joint, outcome- relief for 24 hours then back to stabbing pain in si joint
March 2004- MRI- showed continued disc degeneration (doctor's advice- si joint operation has not shown to be beneficial- does not want to do fusion at this time b/c has child 2 yrs old and single mother- does not advise lifting anything heavy for 9 months)
outcome- back strengthening exercises.
July 2004- Doctor gave Rx for Mackenzie Method, and rental of stem cell electrode device.
Currently- Seeing Chiropractor once a week, outcome- relief for 12-24 hours.

Medications currently taking:
Hydrocodone- 10 mg 4 times a day (every 4 hours)
Soma 350 mg- 2 a day, (morning and night)
Ibuprofen 100 mg- 6 a day (every two hours)

am crying out for help. I have to take a HOT bath every morning just so I can fuction to get ready for work. I have to take 2 Ibuprofen's and 1 Hydrocodone or I cannot even stand up all the way strait in the a.m.'s.
Iv'e tried the ice-packs for 20 minutes and then switching to heat for 15 minutes so that the blood will circulate better. I bought a computer carrier with wheels so that Im not carrying anything heavy. I DO have to pick up my 2 year old, (she's so dad gum cute- how could I resist), I do have to walk up a flight of stairs w/ groceries etc. I get massages every now and then, I do work out; walk on treadmill, sit up's lower back excercises with good posture. As you can see, Im at my wit's end. Picture a single mother doing all these things while raising a 2 yr old, and 7 yr old, working full time at a demanding job where I do have to travel, being the "car pool" everyday, grocery shopping, cooking, doing laundry, going to Church, having slumber parties, attending school outings, entertaning clients. I am a Mother, a daughter, a sister, a best friend, a co- worker, and I used to be an athelete. Im sure If I were not in this horrible pain I would be smiling a lot more. If anyone out there has any answers, suggesstions, advice, comments, name of books, ANYTHING- Please Im needing your help. I notice a change in myself when Im in this much pain. I know my kid's do. It's just not supose to be like this where Doctors are no help at all but have had no problem in taking my money.

As you can see, I am like a candidate for the crazy house. I need to get a hold on this pain. Any ideas?

stacynb 07-20-2004 12:05 PM

Re: psoriatic arthritis
Hi there. So, why do you think it may be psoriatic arthritis? Is that your guess or did your dr. say that. Do you have psoriasis? Not that you absolutely have to with PA, but I was wondering what would make you think it was PA. Do you have pain any place other than the back and down the leg? I have back pain in the mid to upper back, but the main problems for me are the fingers, wrists, feet, ankles, knees sometimes. Bextra may take the edge off. I took it for a while, but I had stomach problems from taking too many pills at the beginning, so I am trying not to take anything if I can. I found that I could take the Bextra for a while and then maybe skip a day. I was taking 20mg. Blood work wouldn't show that you have PA since it is a clinical diagnosis, but it would rule out RA possibly and maybe other types of arthritis. I know how it is with the kids and life in general. It isn't like we can just stop living and not care for our kids, do the daily chores, work, have a relationship, etc... I realize it is important to stay positive even though it is near impossible. i have break downs here and there, but overall, I feel like if I cry about it or feel sorry for myself, it will only make things worse.
I see a Chiro for manipulations which helped my neck, but not the back yet(not sure if it would help the arthritis or not), and I also see him for JMT,which is a bioenergetic treatment(muscle testing). I was open to trying anything besides heavy meds, but I am getting real close to starting meds. I figure, why bother trying to be tough and suck up the pain, when there are other options out there. I really don't want to have liver problems from taking DMARD's or anything else, but I guess with proper care and bloodwork it is worth looking into. I don't know if these types of drugs would help your case, since I am not sure what is going on with your back. What started the back pain? Anyone in your family have arthritis or any other issues? Does your doctor think this was caused BY the pregnancy or did it just trigger it? Do you think it has anything to do with doing gymnastics for so long? I don't know what would cause your current pain, but it seems like there are so many things that would have lead up to it. Juat being active for so long,like tennis players or football palyers having knee problems/shoulder problems.. It just seems like this stuff happens more to people who are athletic.
I try to swim and exercise even when I can barely walk, becauses I do feel better while I am in the moment of working out, but the minute I stop moving, I feel very stiff. Getting out of bed is horrible. I don't even like going TO bed because I can't sleep well because my hands and elbows get so stiff anytime I roll or move, it causes so much pain I can't get back to sleep. I have trazadone to take if I need help sleeping, but with kids, you can't just get knocked out for the night. My kids get up periodically for one reason or another, so I need to be somewhat coherent. Anyway, I hope blood tests give you answers or x-rays, so at least you know what is going on.
Other than the biological drugs, I don't know of any new "miracle drugs" that completely take away the pain. Keep us posted. I wish I could help you.

Sarandipity 07-20-2004 12:26 PM

Re: psoriatic arthritis

Oh my gosh! I just read one of your other posts. All of this pain started back in 99, my 7 year old was 2 years old and going to daycare. One day she came home with a fever, then she got progressively better, not really much just a little redness in her face, and a low-grade fever. Thinking it was a virus. Wasen't too worried. THEN... I got deathly ill... like a cold- but w/ a fever, chills, severe joint pain. It went on for weeks. I took off two weeks from work. I went to the emergency room twice. They just gave me shots of pain meds and tested me for Lupus everytime. I remember once my legs hurt so bad. The only way I can decribe it is feeling like childbirth in my legs.

My doctor.. after months of me being sick- finally tested me for human parvovirus, also called 5th disease. I called my daughter's daycare and was wanting to warn them right away that I had this and other kids could have it- (it is mostly spread by small children) anyway the daycare said " yeah, we had an outbreak in January. I couldn't believe they didn't tell me. Anyway-
I read about it and discovered that it can cause Ruemy Arthrtis, and PA.

I feel the best when Im exercising myself. Going to bed it scary. I know I will toss and turn all night and be in pain. Then in the morning I have to get up feeling like I want to die, when I have two precious little girls to get dressed and serve them breakfast, and get them ready for school. Not to mension get myself ready. Im so tired from not sleeping that I lay in bed longer. Then I get up and can't move. It makes me cry it hurts so bad. I need help with the kids while I get help for my pain. Oh btw... My pain is ALL over my back- up to my shoulders- down to my buttocks. It is in my elbows and hands.

Please give me someone enlighening to hand on to! :rolleyes:

strbay 07-20-2004 09:14 PM

Re: psoriatic arthritis
Pain feeds vicious cycles... We all need a good night's sleep so that our bodies have time to repair themselves... which is totally impossible when you are in pain. Couple that with the fact that you dread trying to get out of bed in the morning because of the pain. (Been there... )So what you still need to do is determine if your pain and problems are due to some for of arthritis...Check out this info I found and see how much sounds familiar.

Some info on back related to arthritis

Spondylitis. This form of psoriatic arthritis can cause inflammation in your spine as well as stiffness and inflammation in your neck, lower back or sacroiliac joints. Inflammation can also occur where ligaments and tendons attach to your spine. As the disease progresses, movement tends to become increasingly painful and difficult. Psoriatic spondylitis isn't the same as ankylosing spondylitis, another arthritic condition. Ankylosing spondylitis doesn't occur with psoriasis and usually affects the entire spine, whereas psoriatic spondylitis may affect only the neck or low back.

Ankylosing spondylitis (By Mayo Clinic staff )

Ankylosing spondylitis is one of many forms of inflammatory arthritis, the most common of which is rheumatoid arthritis. The condition primarily causes inflammation of the joints between the vertebrae of your spine and the joints between your spine and pelvis (sacroiliac joints). However, ankylosing spondylitis may also affect joints in your arms and legs, tendons and ligaments where they attach to your bones, and the joints in your ribs where they attach to your spine.

As the condition worsens, and the inflammation persists, new bone forms in the healing process. Your vertebrae begin to grow together, forming vertical bony outgrowths (syndesmophytes) and becoming stiff and inflexible. Fusion can also stiffen your rib cage, restricting lung capacity and function.

Ankylosing spondylitis is a chronic condition. However, treatments can decrease your pain and lessen your symptoms. Effective treatment may also help prevent complications and physical deformities. Also called spondylitis or rheumatoid spondylitis previously, ankylosing spondylitis affects about 129 of every 100,000 people in the United States.
*****Clues to Diagnosis
*Gradual onset of back pain and stiffness
*Duration of symptoms longer than three months
*Early morning stiffness which improves with a warm shower or light exercise
*Sometimes the pain is located in other areas of the body such as the buttocks and or the neck
*The pain often causes sleep disturbances

What is important?
A treatment plan includes medications to help reduce the pain and stiffness caused by the AS, this paves the way so that a daily exercise program can be adopted. Some people do not need to take medication, but this is not usually the norm. Good posture techniques are critical, this puts less strain on the body.

Additional aids to improved quality of life
Additional symptom management tools include: heat for stiffness, ice for swelling, hot baths and warm shows, ultrasound or gentle massage therapy, electrical stimulators for pain (TENS or TNS units), and avoiding excess calories and obesity to lessen body weight stress on joints. Much can be done to help.

*****The list of meds recommended range from over the counter NSAIDs, prescription NSAIDs. biologics, DMARDs, TNF-a Inhibitors, Sulfasalazine, Corticosteroids.... jsut to name a few. I think that seeing a rheumy is important for diagnosing your problem. According to the health articles, using an x-ray may not help until the damage is there. During your deliveries, did you have epidurals or spinals?... I know that the chiropractor told me that they can actually do a lot of damage. (I had at least 5) If it is truly an autoimmune inflammatory disease causing all your problems, there is help controlling the disease process beyond just NSAIDs and painpills.

I hope someof this info helps.

Albie 07-21-2004 07:17 AM

Re: psoriatic arthritis
Good info Renee. I would just add this. About 12 years ago I was Dx'd with Ankylosing Spodylitis and about 3 years ago I started getting some Psoriasis. A little on the back of my hands and feet, a couple patches on lower legs and a couple on my scalp. I talked to my Rheumie thinking that maybe I was mis-diagnosed. Her response was that with almost any of the spodylarthropathies it is not uncommon to develop another overlapping spondylarthropathy. So in this case it could be one or the other or possibly both. Hope this helps. Good luck.


Sarandipity 07-21-2004 10:25 AM

Re: psoriatic arthritis
THANKS! For all the information. I am going to get blood tests today to rule out some things- as the doctor put it.

You have to be the sweetest person to provide me with such great information. I NEVER had a pain before I had parvovirus I recd from my 2 year old (at the time). I was in gymnastics for 9 years, taught swim lessons, on the volleyball team in jr. high, on the track team in high school, Ive always been active, then overnight I got this horrible pain in all my joints! The only way to describe it... is I felt like a decrepid (sp) old woman. I was crawling becuase I could not walk, going to the emergency room because my legs and ankles and feet hurt so bad.

It will be a good day when I can report back to you what type of arthritis I have.

You have to be a super sweet person to have spent the time to give me that info. Thanks again.

Have you heard of the anti inflam- Arthrotec? Or Bextra?

Lots and lots of thanks!

strbay 07-21-2004 04:34 PM

Re: psoriatic arthritis
I am glad to hear that your doctor is going to "start ruling things out." Is this doctor a rheumetologist? Until you have enough joint damage, many conditions can only be diagnosed based on their clinical symptoms. I had an orthopedic specialist that looked at my finger waaaaaaaaaaay back whn only one finger was involved. He insisted that I had severe tenosynovitis, not PA. I even let him convince me that he could fix my problem with surgery instead of considering DMARDs. Needless to say, after spening a lot of pain , money and rehab on just this one finger (which ended up a total mess) first rheumy said. "I could have told you that surgery wasn't going to work.... tenosynevitis is part of can't cure PA is surgery." So why didn't he step in and say something. Needless to say...I found a new rheumy.

I have not heard of the anti inflam- Arthrotec or Bextra? I know there are a lot of new drugs out there. I have heard the connection between Fifth Disease and autoimmune diseases. Some also say that pregancy can trigger it (for women...). I truly hope that your doctor can help you get a handle on the pain. Good luck and keep us posted.

By the way...I do agree with Albie.... perhaps the reason a condition starts out as one thing and then changes to sound like something else is because it isn't uncommon to end up with more than one autoimmune disease....

stacynb 07-21-2004 06:07 PM

Re: psoriatic arthritis
According to Spodylitis Assoc. of America, "Psoriatic arthritis belongs to a group of diseases, which are referred to collectively as the spondyloarthropathies (SpA). Ankylosing spondylitis is the main condition -- sometimes called the prototype disease of the group. The medical names of the other three are as follows: reactive arthritis, spondylitis associated with inflammatory bowel disease, and undifferentiated spondyloarthropathy. This is where it starts to get complicated because psoriatic arthritis itself can be broken down into five sub-categories, each of which share two main symptoms: psoriasis, which is a scaly rash that occurs most frequently on the elbows, knees and scalp; and joint pain in the form of arthritis. To further complicate matters, about one-fifth of those with psoriatic arthritis will develop involvement of the spine, called psoriatic spondylitis. The spinal involvement is similar to that of ankylosing spondylitis and can cause the spine to fuse into one bony column, or skip areas and fuse randomly."

[B]I am wondering if the pain in my back could be anything other than psoriatic spondylitis, or if that is what it is. How would I know if it is this or something else?[/B]

Sarandipity 07-21-2004 06:57 PM

Re: psoriatic arthritis

I am seeing two doctor's: 1) a bone and joint doctor, and 2) a gen practitioner

The gen prac. I have been seeing for years, since my youngest was only a few months old, (she is almost 8 now) And the bone and joint doctor sent me to phys therapy for two weeks to see if it could help. My gen prac. is giving me the blood tests in which she will " rule out " things- not sure what. I will ask my bone and joint sp. the name of a very good reumy (I live in Houston)

After having 3 years of relentless pain in my si joints, knees, hands, fingers, wrists, and in my shoulders- I am finally taking steps to get better instead of just saying ok- I have a degen disc - thats the cause of all my pain. It's not true. There is no way my body hurts all over and is NOT the cause of a disc. Like I said there is no other way to describe it except I feel like a old old woman (picture a grandmother bent over in pain) that is me.

I wait so bad to find out what is wrong with me and to deal with the cards Im dealt.

I cannot thank you enough for all of the information you have given me. You have been more than kind. You are a God- send.

Thank you, thank you, thank you Renee! :bouncing: :bouncing: :bouncing:

strbay 07-23-2004 12:10 PM

Re: psoriatic arthritis
I think we all realize that just because PA doesn't mean that everyone else does too... If in sharing my symtoms, trials, pains, meds and success, someone else has insight into what might be going on with them or what may help, then my living with PA has not been totally in vain. Having said that.... I have noticed with doctors that what ever their specialty, that is there approach to your symptoms. I had two orthopedic specialists that came up with the same "ortho" diagnosis... and and internist that thought it was all just a serious infection I was dealing with. So how do you ever know if you have the right diagnosis???? I don't know.... So many conditions truly have the same symtoms...with one condition being as simple as the common cold and the other being a terminal condition. I think part of finding the diagnosis is finding the doctor that can bring control and relief to your symptoms....AND finding a doctor that doesn't poo poo your input and questions. My rheumy is open to all my questions and suggestions (and he never says no to an option without explaining why it is not worth or not safe trying.)
Hang in there!
Renee :)

***By the way.... yes, I do remember how it felt to walk and move as if I were 90 years old. While life is not perfect now, it is sooooooooooo much better than those first few years in pain.

stacynb 07-23-2004 01:43 PM

Re: psoriatic arthritis
Thank you and Thanks for all your input!

abbygirl2 07-23-2004 08:58 PM

Re: psoriatic arthritis
After reading as much as I can, I have decided that I probably do have PA. It all fits. Unfortunatley I will probably have to wait months before seeing a rheumy. It really doesn't matter to me which kind of arthritis I have-although I know treatment will be different, that would be the only reason I would continue to push to know exactly what the problem is.

Getting out of bed has been really hard this past week for some reason. Some mornings are ok, then some are really bad. My spine is really sore tonight too. Anyway, just wanted to thank you all for the info you have provided, I have learned a lot. I hope you all feel better
One more thing...Do any of you get tingling and/or burning that you suspect is because of PA? Just trying to link some symptoms.


strbay 07-26-2004 09:07 AM

Re: psoriatic arthritis
"Do any of you get tingling and/or burning that you suspect is because of PA?" Where do you have tingling and burning? In your hands and feet can be because of inflammation... In that case an anti-inflammatory can help. I use to also wear wrist supports when I was sensing a lot of tingling and pain in my hands or wrist.

Wish you could see someone sooner... but this is a start. Good luck! Renee

crystalblue20 07-31-2004 10:54 PM

Re: psoriatic arthritis
Hello everyone. Im new here, just stumbled across these boards surfiing the net. My name is Crystal, im 20 and i have had psoriatic arthritis since I was 14. I have been on Methotrexate for about 3 years and its been a horrible experience for me. Dealing with the nausia on a weekly basis really wore me out. I am soon starting embrel and im very excited. Hopefully I will handle it much better. Im happy to finally find people who know what I am going through. I will be back soon to share more with you. Take care.

Sarandipity 07-31-2004 11:07 PM

Re: psoriatic arthritis
Welcome, you will find a good support system here. Im always here to listen. We will talk soon, going to catch some zzzzzzzzzzzzzzzzzzzzzzzzzzzz's.
Nighty night!

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