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Posted By : mrphillips15 - 7/26/2017 3:46 PM
Hello all!

Looking for others with autoimmune arthritis. I noticed there is not a forum for such, figured Chronic Pain was appropriate.

I was diagnosed last September after dealing with symptoms for a decade. I currently manage it with weekly Enbrel injections, ibuprofen, and flexeril. Of course, "manage" is a term I use loosely; the Enbrel is supposed to slow the progression, and the others are for pain and stiffness, but I still hurt 24/7. I've also begun suffering symptoms of hypothyroidism (have for years, but now getting worse) without the accompanying fluctuations in hormone levels. Rather, Ive not had a complete thyroid panel done, so only the standard level markers have been tested.

I am seeing my GP on the 1th to discuss more MRIs, since I have increased stiffness in my t-spine and new pain in my hips which radiates down my left leg to my ankle. Ive not gotten these areas scanned before, so hopefully no nasty surprises like full-blown AS or anything. I do have a bulging L5-S1 disk, which could be the culprit, but still need to check the stiffness out. Additionally, I am going to ask her to run a complete thyroid panel or refer me to an endocrinologist who will do it. I have a feeling she will do it herself, because she's really good about getting my input.

Anyway, just looking for others with similar issues to connect with. Half my family seems to think I'm faking it, the other half don't seem to know what to think, and I have no friends (unless someone needs something... shakehead )
Dx: Spondyloarthritis, degenerative disk disease, cervical disk disease, IBS, fructose malabsorption, lactose intolerance, vertigo, chronic migraine, fibromyalgia, chronic fatigue, chronic myofasciia pain syndrome
Rx: Enbrel, ibuprofen, propranolol, flexeril, butalbital, promethazine

Posted By : straydog - 7/27/2017 6:24 AM
Hello & welcome to the forum. Not sure if we currently have anyone here that has the same as you. The Enbrel & Nsaids are usually the treatment for this condition. By chance are you seeing a rheumatologist & this is who is rxing the Enbrel? Unfortunately, stiffness is a big issue with this.

Try not to worry what others think. Sometimes people look at us & think well they look fine to me. They don't live in your body & have no idea what it is like. People will either understand or they won't. Just live your life the best you can. A lot of us do not ever let our health issues be the topic of any conversation & we let it go at that.

Hopefully the dr can come up with a plan for you. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 7/27/2017 6:24 AM
mrphillips:
Be aware that having one auto-immune disorder leaves you at higher probability of developing a second auto-immune disorder over time.

You would be well advised to follow a trail of auto-immune suspicion with regards to your hypothyroid presentation. Hirshimoto's hypothyroidism is an auto-immune based form of low thyroid function. I would explore an auto-immune link.

I have mixed connective tissue disorder (auto-immune disorder similar to Lupus). Several years later, I was diagnosed with primary adrenal failure (Addison's disease) with an auto-immune causation.

You may want to have both an endocrinologist and a rheumatologist to give opinion.

If you have been on any degree of glucocorticosteroids for treatment of your joint flares, I strongly recommend that you talk to your PCP about including basic blood panels for cortisol and ACTH levels. Corticosteroids have the effect of suppressing the pituitary gland's release of ACTH, a critical hormone involved in adrenal gland production of cortisol and aldosterone. If you have had use of prednisone or prednisolone or dexamethasone or similar you would be at risk for adrenal insufficiency. Symptoms of adrenal insufficiency casts a wide net and is more often than not mis-diagnosed - unrelenting fatigue, severe muscle and joint pain, brain fog and decreased cognitive acumen, digestive distress, general malaise with flu-like symptoms.

Ask your PCP for a blood chemistry panel that includes a morning cortisol level and morning ACTH level. The blood draw MUST and performed between 6- 7:30 am. Cortisol and ACTH levels will be compared to large sample population statistics that correlate to expected Morning values. Cortisol and ACTH levels are not static but follow a diurnal pattern.

A baseline morning cortisol less than 8 ug/dl and an ACTH less than 10 would be suspicious for AI and warrant additional testing.

I hear you about the absence of friendships when faced with chronic illnesses. Chronic illness can be inherently isolating. Look for ways to find purpose and meaning and activities or hobbies that give you inherent happiness. I am an introvert and derive energy in solitary pursuits. If you are more of an extrovert and do best among the company of others, going to a coffee cafe and sitting and "people watching" may give you a sense of inclusion. I have a tea-cup Maltese, Molly, who is my best friend and constant companion. The love of a companion pet is a life-affirming bond. If you do not have a pet, you
Might consider adopting a cat or dog. Companion pets leave indelible footprints on our heart.
Karen
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 7/27/2017 6:55:20 AM (GMT-6)


Posted By : mrphillips15 - 7/27/2017 3:07 PM
Maybe I will be the "founder" of such a group of people here, straydog lol

I am currently under the care of a rheumy in addition to my GP. This is my third rheumy since 2012, and I've not been pleased with any of them; the current one is, however, the least disappointing. He did at least listen and suggested the testing we did that gave me my dx. I am certain that my GP will refer me to an endo; I'm going to ask her first to run the thyroid tests, though, because I've found her to be much more open to receiving my opinion and thoughts on my own care vs. every other doctor/specialist I've seen.

I used to really enjoy drawing, but I cant even write for more than a few minutes at a time now because my hands cramp up. I do enjoy reading and do it as much as possible; however, I still work part time and I have a little girl (2 in November). We have pets, but anymore they seem more of a burden; I know that's terrible, but I just don't have any interest in playing with them. In fact, I have very little interest in anything, aside from being able to go to the bathroom or bathe without hearing "MaMa!!!) every ten seconds lol

Anyway, Im definitely going to pursue this until I get answers. *Something* is going on, and I feel like the propensity for other autoimmune diseases just cant be ignored.
Dx: Spondyloarthritis, degenerative disk disease, cervical disk disease, IBS, fructose malabsorption, lactose intolerance, vertigo, chronic migraine, fibromyalgia, chronic fatigue, chronic myofasciia pain syndrome
Rx: Enbrel, ibuprofen, propranolol, flexeril, butalbital, promethazine

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