Pain and Rheumy appointment

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Mrs arthur Itis
Regular Member

Date Joined Jul 2009
Total Posts : 41
   Posted 7/27/2009 8:05 PM (GMT -6)   
Once again it's turning into another sleepless night, and I wasn't going to mention this to forum, but I'm in so much pain from my bra line upwards, all my ribs, shoulder blades and guiders right up into my head, a really persistent headache finishing it all off. I've been on Enbrel for about six years now and at first it was absolutely fantastic, but about last November I started gettin more regular flare ups and extreme tiredness. This gradually increased until last February when I had a bad bout of flu and had to come off Enbrel until it passed, and it took weeks to get over it. Since then the pain and the flare ups and tiredness have again gradually increased. This is made worse by the occipital neuralgia which brings on awful headaches and neck pain which is relieved for a short while when the neurosurgeon injects my skull with corticosteroids injections, generally about once every ten to twelve weeks. I've told him about the other symptoms and he wonders if the Enbrel is becoming less effective and arranged for me to see the rheumy tomorrow.
I always worry in case he tells me that either my pain isn't as bad as I think it is!!! or that I will have to come off the Enbrel. I have never said this to anyone before, not even my dear husband, but I am so afraid of going tomorrow. I just get so sick and tired of the hospitals I have to visit - Liverpool for osteoporosis infusions, Preston for corticosteroid injections, Chorley for rheumatology nurses, and Walton for my eye problems - it's as if my body just belongs to them, I have no control and they poke and inject at will.
I really am so very, very tired of it all.
Sorry to burden you with my woes, but I notice how supportive you all are, and dear God i feel so much in nedd of support just now.
Thanks for reading this
Mrs Arthur Itis
 At least the pain lets me know I'm alive!
Conditions: polyarthritis , rheumatoid arthritis, osteoarthritis, ankylosing spondilitis, fibromyalgia, costochondritis, degenerative disc problems, occipital neuralgia, sjogren's syndrome, osteoporosis, detached retina, macular degeneration. Mobility problems, wheelchair user outsaide home

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 7/27/2009 8:29 PM (GMT -6)   
Mrs. Arthur Itis...

Don't apologize! You are not a burden by any means! Most people here "get it"; that's the great thing about this board. I'm so sorry for what you are dealing with. Really. I can relate to the hospital thing. Over the past six years - I have spent almost a year of it hospitalized. I still have to go in to the hospital anywhere from 1 to 4 times per month for IV fluids; meds; tests; something. My veins are shot. It IS so tiring, I agree....

I wish I had some magical words that would make it better.... Keep doing what you are doing and reaching out here on this board. Hopefully there will be others that will be able to give you more support.

I'm hoping you get some sleep tonight, and that your pain decreases....

Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 7/27/2009 10:01 PM (GMT -6)   
I agree with Tina, don't apologize, no one here has to and we all need the venting..
I'm sorry you have to deal with all this too.. Have you tried a heating pad?
or hot water bottle? Testing, I get testing all the time, mostly blood work
and then they have to find a vein...
Sure hope you can get a low pain day soon..
lots and lots of soft hugz...
sometimes talking helps and maybe a good pain management psychologist might be able to help,
so maybe something to look into...
Please know we care!
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines


Forum Moderator

Date Joined Feb 2003
Total Posts : 16416
   Posted 7/28/2009 1:50 AM (GMT -6)   

Hi Mrs.

I hope your appt goes well with your dr tomorrow. But, please be honest with him about how bad your pain really is, otherwise he will think you are doing fine. Try to relax and not let this appt scare you stiff. Drs know that medication can affect people differently meaning we are not all a one size fits all when it comes to medication. Its done by trial and error so to speak.

You asked about Fentanyl patches. I tried them and used them for awhile and then had to go off of the. I was bumped to the 75's and was unable to urinate which is one of the side effects from them.  I personally did not do all that great on them. They caused me to sweat really, really bad. If I went outside in the summer and got hot then the patch heated up and released too much medication. That resulted in them being on the low side come day 3 and I started having some withdrawls as a result of this. My daughter was extremely happy when the dr took me off of them. I guess I was not too nice while on them and was really snappy. But, you know they may work perfect for you. Alot of people, me included, had problems getting them to stick on. I bought this product called Tega-Derm, its the clear adhesive used over IV's by the hospitals. This stuff sticks,lol. By using them I kept my patch clean & dry.

Please let us know how the appt went.
Moderator Chronic Pain
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 7/28/2009 2:18 PM (GMT -6)   
Dear Mrs.,
No apology needed. That's exactly what this forum is for, and we all understand the pain, even if we don't have your specific symptoms. And most all of us need to vent from time to time (or more often!).

Like Straydog said, I hope you were honest with your doctor today. I don't know anything about Enbrel, but I sure understand about feeling your life is controlled by doctors and the health care system. It becomes like a job to us, but most people would never realize it.

I hope you post later and let us know how it went.

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