3 months bed fast.

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D Hardin
New Member


Date Joined Jan 2017
Total Posts : 7
   Posted 1/17/2017 10:28 AM (GMT -6)   
I have been through the ringer backwards and to no avail. I am waiting to see Physical therapist thursday. I can not raise from bed or a chair without pail level going to a 8 or 9. Having a past health history of heart problems I am unable to that many if not all the new anti inflammatory drugs. I was on prednisone for 2 years till a cataract nearly blinded my right eye. Now my only relief is 3200 mg (a day) of Tylenol to muster up willpower to see my GP, Rheumatologist, Cardiologist, and Orthopedic surgeon. Plus x-rays, MRI and lab work ups, and now awaiting PT eval.

I have learned many thing reading over the may with similar experience and NOT being a Dr I have come to a conclusion. How do I not Upset this list of experts that see no reason for me to be in suck pain 24/7.
Being at the end of my rope I am quite sure and with casue feel if I suggest a possible reason for my pain I will be discarded again as in the past.

I have had and have told all medical staff I have had and still a lot of problems with my teeth. Most periodontal disease. No one even looked in my mouth or wrote this fact in my medical notes. Having been on prednisone for nearly 2 years my teeth have lost all the enamel around my gums and appear to be rotting away but (NO cavities) in my mouth what so ever. Dentures are in my near future and I guess so be it. One tooth has broken off and another is very loose. But the constant struggle to keep mouth pain to a minimum with water pick and brushing has been the norm for many years. Now I read this mouth bacteria in my mouth has a great chance of invading my RA with a rapidly exhilaration of knee join pain.

How do I bring this up to the species that have left me after the last 3 meeting with absolutely no medical plan forward/advice or guidance. It has come to the point where I should not be having this type of pain so what I say has little effect.

Signed - deject and bed fast for 3 months.

D Hardin
New Member


Date Joined Jan 2017
Total Posts : 7
   Posted 1/17/2017 10:41 AM (GMT -6)   
Interesting reading. any thoughts?

http://www.futurity.org/target-immune-system-treat-gum-disease/

Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 2052
   Posted 2/2/2017 1:58 PM (GMT -6)   
they really don't have a lot of answers but continuously blame the patient...you don't exercise enough, you exercise too much, blah, blah, blah.

they don't see the whole person and they are very good at billing us. this seems to be their main purpose in life. I can't believe how health care prices keep going up when the care is so lousy.

Maybe some other doc would help?

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 2/2/2017 5:20 PM (GMT -6)   
If your pain levels are that high you should really ask for pain meds and if they are hesitant ask for a referral to a pain management clinic.

I went 20 years with RA that was pretty in check until the last 5 years or so. When it got bad and the meds were no longer controlling it I asked for help from my Doctor regarding it. My quality of life improved quite a bit after getting pain relief and it was well worth it. Now, Im not able to do a lot of things but I am still able to do some and thats what matters.

I hope you find some relief. For some of us we either run out of meds that keep things under control or they never do work that great to begin with. There is no shame in asking for help, especially if it is affecting you so severely.

Also, don't overlook mental health. It is a real struggle having an illness like ours and being down all the time is no help. -Don

D Hardin
New Member


Date Joined Jan 2017
Total Posts : 7
   Posted 3/12/2018 3:30 AM (GMT -6)   
Quick update;
First I am sorry I have not added the solution I found totally by accident. Without medical advice or direct assistance.

I explained above my thoughts and concerned of an oral infection being a contributing factor. Around the first of April last year I was still bedfast 23 of 24 hours. Disparate and at my ropes end. I had some new tooth pain from a perfectly good tooth that had broken off severing months earlier. A side effect of 2 years of prednisone. (I had not done anything about it at the time) So I was becoming more of pain issues. I got an Antibiotic from the dentist and had hoped to get in some time and have the remeans of the tooth removed.

At the time my rheumatologist thought I might try rehab therapy. Well, that was a wast. I had to load up with 3200 Tylenol and my walker went 2 days a week and just got worse. Just more pain and having more pain the next days. This went on for nearly 2 months, a total waste.

Unbenoce to me on the 3 days of the antibiotic my tooth felt much better and guess what. I could walk pain-free.

YES PAIN-FREE..

Bingo I thought it was an infection. I had had several blood test to see if I had an infection and was told I did NOT have an infection. I had exhausted any solution from my rheumatologist and decided to not go to see him if he had no plan or treatment. But I did have a follow-up with him in July or August last year. When I saw him he knew I was a very unhappy patient last time and total surprised I was walking with no issues. I told him I had an infection and the antibiotic solved the problem. Reluctantly the Dr explained to me I was half correct. He said no it was not a knee infection but uncontrollable inflammation. And yes the antibiotic did indeed solve the inflammation/pain issues. He explained it is well known for over 7 to 10 years that an unintended side effect of the simplest oral antibiotics can and have been proven to cure inflammation. I asked him If you knew this why did you not at least try it on me. He explained only 1 in 7 rheumatologists was giving this simple $4 prescription. He said it was not giving it because it was "off-label" and did not want to be liable. Well got to hell, I screamed "REALLY".

As nice as I could I explained I didn't need a Dr that was looking out for himself more than his patients and walked out. I really like the man and knew his greatest asset was knee and joint injections that were nearly painless. Yes, he was that good at joint injection. I had so many injections I was to the point it was not doing any good.

In conclusion please don't assume my solution is your solution. This would be wrong and very misguided advice. I only am explaining that really did happen to me. I was not a happy camper, I was probably not treated properly. I have been dealing with this knee and joint pain for over 8 years and escalated to total immobility. and Three-day later I have not had but the normal aches and pains of a 64-year-old man. All I hope is to advise and express that the lesson I learned might be communicated to others.

Post Edited (D Hardin) : 3/12/2018 3:33:32 AM (GMT-6)


msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 476
   Posted 3/13/2018 12:00 AM (GMT -6)   
What good news for you. I can't believe your Rheumy did that.

I didn't see this post before but yes, some RA patients had suggested an antibiotic to me some time ago on another site. I had mentioned it to my Rheumy and he said I could try it(we were both desperate after years of my suffering)but he wanted me to try 2 other meds first. One was a bust but the other one actually worked for me. No remission but feeling much better than I was before. I'll keep the antibiotic for when this one runs out. I hope that I'm as lucky as you are with it.

Great job! Keep up feeling well.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 3/13/2018 9:12 AM (GMT -6)   
Antibotic therapy is an older known treatment for RA. It can help but its a certain type of antibotics, Sulfa and the erythromycin groups can help RA...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 3/13/2018 9:14 AM (GMT -6)   
Sorry your doctor put you through hell...but yes antibotic therapy is not the first line of treatment, but it should be because it is less costly and has fewer side effects...Many well wishes and prayers to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

D Hardin
New Member


Date Joined Jan 2017
Total Posts : 7
   Posted 3/13/2018 9:53 AM (GMT -6)   
I had had it with being strung alone. Left to lay in bed. I had to cancel many thousands of dollars contract work I had for the summer. I mow lawns, big lawns commercial yards. It took me many years to accumulate many great accounts and all my Dr's knew I need to feel good enough to mow these accounts. One by one was canceling the most difficult accounts and had notified about half of them before I found my cure. If I was a bitter man and let this get to me, but I won't. I told all my medical team that I am a look forward kind of guy. My GP now is on board and willing to prescribe an antibiotic as I might need it. My GP explained to me I had better not burn the bridge with the R A specialist I had. Implying any other RA Dr would most likely find and read the outcome of my last RA adventure and support his lack of action. Which would leave me in a bad spot once again.
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