I have been having problems with my joints, mainly about a month ago after sitting or sleeping my achilles tendon is stuck so that my first couple of minutes are more of a skating shufflel ratherthan a walk. My knees, wrists, and elbows are constantly stiff and sore now. My pain management doc wanted me to go to PT and my neuro said it was just more symptoms of PN.
I am now wondering if I need to see a rhuemy to see if I have some immune thing going on, my PN is idiopathic and flairing up just a little. I am on Lyrica and doing well except for the spare tire around my tummy now, turned me into sweet freak for the first time in my life. Sheeeesh!

Before I gave up on this situation, I'd be seeing a rheumatologist to rule out any autoimmune disorders. There are some autoimmune problems that will initially test negative and later show up in the bloodwork as positive. Sjogren's is one of those. It takes an average of 7 years to become positive and some people never test positive with it.

Sore joints are one of the tell-tale signs of autoimmune disease.

Have you seen Liza Jane's charts? www.lizajane.org

Billye

Jan,

Having PN does not mean you couldn't benefit from PT. I'd listen to the pain management doc and go to PT for evaluation. They won't do anything if they don't think they could help. My experience with getting a lot of PT over the years is that unlike doctors, PTs are miracle workers who actually help you heal. Doctors don't understand what PTs do. Insurance usually pays for a limited number of PT sessions, so it's important to get set up on a program to maintain and even improve your progress in flexibility and pain reduction.

Now is exactly the very worst possible time to turn into a sweet freak. Most of us with PN have metabolic syndrome ( http://www.americanheart.org/present...dentifier=4756 ) . Excessive sugar intake makes our PN worse in the short and long term. Going on a sugar binge (including fruit and fruit juice) sets up about three days of intense pain in my sorry experience.

Most of us can take powerful action to either start healing our PN, or stop its progression. What helps our PN also helps reverse metabolic syndrome and heart disease. Two of the things that will help our PN are maintaining a healthy diet and doing a daily exercise program. Your PT and possibly your physician can help set you up in both. Best is a program with a support group, such as a coronary rehab group. My support group is my wife for diet and my dog for exercise, as in "Walk me, walk me, walk me pleeeeeaaaaase". My wife was a Jackie Sorenson Aerobic Dance instructor for years and is still a physically fit exercise enthusiast at the age of 60.

It turns out that a diet and exercise program good for people with arteriosclerosis and heart disease is also good for people with PN. Google links to both subjects are http://www.google.com/search?hl=en&s...et&btnG=Search and http://www.google.com/search?hl=en&s...se&btnG=Search
.

Hi Jannaw, it really shouldn't be left up to the patient to decide whether you need more testing or not, your neuro is suppose to be looking after you and if you complain of more symptoms they should do something about it, not just say " its just more PN symptoms " thats a pretty slack neuro i my book, gezz, some of these so called specialist make me real angry.
I would be looking for a neuro that is a good PN specialist thats really willing to try and help you and work in with a Rheumo to be tested for all tests that need to be done to try to find the cause of your problems.
A few years back i was on very high doses of a drug that made me a real sweet tooth and i started to really stack on the weight, the way i got around this was to eat fruit & chew sugarless gum, instead of going for the sweets, it worked for me.
good luck
Brian

Because of the PN you have probably changed a good deal of your 'lifestyle', haven't you? You are less inclined to 'go out', if at all. It's fact that atheletes [for example] 'come back' IF they start exercising soon after injuries. Why? muscle tone is lost, tendons SHRINK/tighten and, well things go downhill from there. Dramatic changes are of those long-term bedridden folks...it's a slow gradual and deteriorating process.
I would go w/the PT route, BUT only after checking out what area PT services are. You may get a therapist who's no CLUE about PN and you could be one unhappy camper after one session...Going and watching, seeing how therapists treat their different patients, well, you can get a good feel of a place, and if it's for you. I've had 5 'rounds' of PT in my 4 years of PN/CIDP., tho two were for foot/knee rehab after falls. I'm still walking [tho not far] and driving and will continue to try and keep doing so!

As for seeing a rheumy or even another PN doc, those second opinions may or may not get you a clearer diagnosis, but if the extra 'input' costs you just the co-pay, what have you got to lose? To me, it's a no-brainer, in that it puts a new brain, and pair of eyes and ears on your case....& maybe get you more tests, or an impetus to your current doc [that old peer pressure thing] to do the needed tests and get you on your way.

Have you tried the glucosamine/MSM supplement route? Just another thought to put into the already confusing mix.

Hope this helps! - j

First, I want to thank you for the quick responses and good information. I have been to Lizajanes before but it confused me, I will revisit now that I am off neurontin and able to absorb and think more clearly. My PT is awesome, she tweaks me into shape and lectures me accordingly and I have known her personally for 20+ years, I will go see her.
I know the sweet thing is bad for me, I am bloated and sick right after I consume the "crap" but all of the sudden I crave it. I chew trident white for dry mouth as directed by my dentist, will just chew it for a new reason now, thank you!
And, Dahlek you hit the nail on the head about being inactive, three years ago I worked full time, went fishing and hunting every weekend with my hubby and still kept house and cooked. These days, I work part time, let the house fall apart all week and spend my weekends pacing myself to clean and do laundry, shopping, etc. When quitting time ends at work I go straight home and don't leave. My husband was just diagnosed with seronegative rheumatoid and his doc has told him his abnormal cells will become cancer and when he returns on Labor Day he must begin "treatment", I am bugging him for a second opinion cause that sounds just "whacked" to me. He is now as inactive as I am.
I will share my story that began six years ago in the month of February, my nephew was in a serious car accident where he was DOA at the ER, a fabulus Dougie Houser look alike brought him back to us after two weeks in a coma and alot of scares. That incident brought us a roller coaster of lows that thankfully have seemed to end.
Next, my then five year old grandson was diagnosed with AML leukemia, the little family was on a plane to Seattle that day and we began that journey that was months away from home, a relapse a year later when he was six. His brother was his perfect match and donated marrow twice. We suffered many close calls with fungal infections, menigitis, etc. I am happy to say Joey is turning eleven this month.
In May of 2004 we received a call that my 25 year old daughter Angela had been admitted to the hospital with severe kidney infection, three days later we got the call that she with in the ICU with a pulmonary embolism. We got in the car and made our 13th "medical journey" to Seattle (at that time it was actually Tacoma General) to see our daughter in severe distress and dying before our eyes. NO one knew what was going on, she went into organ failure and began to suffer ascities and there must have been 10 liters of fluid in her abdomen. Finally a nurse, the same age as Angela stepped forward and said get her out of here if you want her to have a chance. She told a coworker she didn't care if she lost her job, not speaking up was the wrong thing to do. We moved her that day to University of Washington hospital. It had the most amazing liver ICU, within four days she was of the ventilator and her first words were, I want food. I was overjoyed, dermatoloy had biopsied the blisteres and rash we had questioned at Tacoma General and been told it was just the fluid retention. NOT, it was the herpes virus in her blood stream, it took two weeks to arrive there. My nerves of steel were gone, I was dealing with newly being diagnosed with PN and we were in the Ronald Mcdonald House for Joey's yearly accessment and Angie was gravely ill. Within a week Angie was moved to the general floor and began what was supposed to be a long recovery, I stayed with her another week and returned home confident that we would be bringing her home at the end of June and I would care for her daughter while she rehabed in a local hospital. I lined up a plane, a pilot and Boeing donated the fuel to bring her home on June 29th, I received a call that morning that she was back in ICU in septic shock. For three weeks I spent every day by her side, her twin and I massaged her, bathed her, played music and finally we held held her to say goodbye. I returned home to begin a custody battle with the father that had only known Angie's five year old daughter Zhoe for a year. It was long and ugly but we adopted Zhoe after a two year battle in the courts.
One month after we buried our Angie we got that middle of the night phone call that no parent wants to get, our youngest daughter had been in a car accident. She was drunk, as was the driver and treated very poorly by the ER staff.
We were sent home with her and told she only had severe bruising from the crash. At home she kept collasping and saying something is wrong with me mom, after a week of calls to an ortho they finally decided they could fit her in, he did new xrays and an MRI, I got a call an hour later that she was to get in bed and only get up to use the bathroom while they conferred with an ortho in Seattle, the next day we took a life flight to Haborview where she undewent surgery for a severe pelvic fracture, why she didn't become paralized at any time is an act of God, I brought her home with two seven inch screws holding her pelvis to her spine and months in a hosptial bed with a cath bag. But, she survivied, I didn't have to bury two daughters in one month.
I believe I survived all this in a zombie bubble, I recently read the guest book from my daughter Angie's funeral and I broke down in tears at all the people that had come that I didn't SEE, we had held her service on the hill in front of our home where she had rolled, sled, and grown up, so it wasn't like I was encapsulated in a building. I think my hubby and I are coming out of our zombie bubbles now and are falling apart health wise, it is time to tend to us and I have just received a huge box of supplements from Iherb.com and shopping wiser. We will begin to walk, my biggest wish in the world is for an indoor pool, it means the mortgage will go into our retirement a couple of years, but I have learned you can't live for tomorrow and with certainy we won't be here for retirement if we don't join the living now. I have an eight year old granddaughter to raise so I need to kick it in and get healthier now.
Didn't mean to ramble just wanted to give a snapshot of how we arrived where we are now, and I truly appreciate all your help and advise!!!

You are a very impressive person, overcoming the heartbreak and adversity that has been heaped on you. I wish you well with your battle with PN and with your husbands health and i wish you all the best and salute you in the raising of your grandaughter.

I have to second everything that HeyJoe said. And I send you my very best wishes for a speedy recovery.

Billye