Another diagnosis today.....they are piling up.

[irish]

Saw neurologist today and ended up with a fibromyalgia diagnosis. So 5 autoimmune diagnosis, 2 immune deficiency diagnosis and the fibromyalgia one really surprised me. Never even occurred to me. No matter I have been feeling so awful. So....diagnosed with pancreatic enzyme deficiency, inflammatory cystitis with incontinence and since end of May. As I text to my daughter in law.....whine, whine, whine.lol.

The once thing with autoimmune is we never know what is going to pop up and when it will pop up. Take care all. Oh, I will be starting on Gabapentin at 100 mgm twice a day for pain. Low dose cause I am so drug sensitive. I bet I am about the last person to be put on gabapentin on this site. Irish

[susanep]

irish, I am sorry to hear you have another added to your pile. At first after I was diagnosed with fibromyalgia, I didn't want to take the gabapentin. I can't remember why now. lol. Now I wouldn't want to be without it. I now take 800mg. He has me down to take it 3 times per day if I need it, but mostly I take one before bedtime to sleep better without my legs etc. hurting. I do sometimes take 2 per day, and 3 only if it's a really bad flare day.

susanep

[SjoDry]

Irish,

I don't know if you have ever tried or considered the low dose Naltrexone. I just started it a few weeks ago and it has helped me in several ways. I am sleeping better, have much less fatigue, it has helped my GI function and it is definitely helping my pain. I am now at the maximum low dosage (4.5mg). The only side effect (which I have not had) at this dose, is possible vivid dreaming.

Because my fatigue is so much better, I am no longer drinking those "bad for me" caffeine energy drinks. I am titrating down on my Prednisone and also plan to do the same for my Plaquenil. The Plaquenil is still making me lose large chunks of hair daily. I am greatly encouraged for the first time in years thanks to the LDN.

I had a real challenge trying to manage the Gabapentin. It just wipes me out.

Good Luck to you.
Take Care.
SjoDry

[Carolina]

oh dearest Irish!

I really thought there was a point when 'enough is enough'.  And for some that happens...but not for us.

My latest joy:  My Cymbalta turns out to be the cause of my 'jerking (myoclonus) and sudden collapse (syncope)'.   I forgot to put the Cymbalta in my med boxes for three months and for three months my jerking and collapse was gone.

I re-started Cymbalta on August first, and the jerking came back! ACK.  Cymbalta is my miracle drug, or was for 6 years.  So now I take it every OTHER day, and so far the jerking is gone!  Maybe that will be the solution.  I sure hope so.  But perhaps another antidepressant will be as successful with pain as well.

I confer with my Neurologist's NP in a couple of weeks.  I'll keep you posted.

Friday I had a routine gastro-endoscopy to rule out any 'problems' so I could have manometry to evaluated my  swallowing problem.   The gastroenterologist took biopsies of tissue that looked like Barrett's esophagus.  I'm not totally surprised since my mother had esophageal cancer.  I assume the doctor will tell me the results of the biopsy.  UPDATE:  GOOD NEWS!  NO BARRETT'S so I missed that one!

I of course take 3600 mg of gabapentin daily.  So far so good.....otherwise I have 'skin on fire' syndrome. 

However, I wouldn't take bets on when Gabapentin will 'turn on me'.  At 75 I'm wondering if I will outlive all my medications and keep adding problems......doesn't sound too appealing.

But really, I can't complain.  Tomorrow I go for my IVIG, which keeps me pretty much infection free.

Actually, the most annoying new condition right now is the 'Thrush' on my tongue, which is yellow.  I have to look at all the home remedies again.  I just brush my tongue repeatedly with my electric toothbrush every morning.  And try to ignore the Thrush the rest of the time.

Otherwise, I feel pretty good.  All things considered!

Elaine

[susanep]

Elaine, you too have been dealing daily with so much on your plate. I hope you feel better with more days of feeling good, and doing things you love.

This is such a hard road, but someone must of thought we were the chosen for this particular load. lol..Not funny, but we have to keep our humor in some form. Anyway, it helps me.

Hugs,
susanep

[irish]

Hi Caroline, You have had a lot to keep you busy and out of the bars, haven't you. Seems like there are times when the load gets heavier and we must work harder to carry this load.

Hope you get to feeling better. It might be that fall will be better for all of us.....if the world can live through all these hurricanes. Take care all. Irish

[Nomad]

Sorry to read this. Too much on your plate. Having some of that situation here.

Several docs have told me I have Fibro. When my previous  rheumatologist got mad at me for asking, I dropped it.

However, I moved recently. The new GP thought I might have it and now the new rheumatologist feels the same way.  I'm not sure she has made it official yet.

I'm finding (as always) frequent rest periods essential. I plan EVERYTHING.

I have a cream I use for my facial nerve pain with Gabapentin in it (also lidocaine and capsaicin). NOw that I use less for my face, I've been using it now and then for various odd pains in my legs etc. and it has been helpful.

YES...you  mentioned the summer weather. IT has been extraordinarily difficult for me/ many of us.  And now I'm possibly looking at a hurricane. (Did you hear that sigh???) Greatly looking forward to Fall.

Wishing you well.

[araminta]

So sorry about this Irish.   I hope you cope OK with the Gabapentin.   Also hope you're managing to find time for some enjoyable activities, so as not to get overwhelmed by these d****d symptoms.   They mustn't be allowed to take over lives, though I know that's sometimes easier said than done.

[LucyD]

Irish, I am so sorry. I hope the Gabapentin helps and that you start feeling better.
LucyD

[irish]

Thanks for all your concern. I took my first dose of gabapentin last nite and was a little bit sleepy this am but not bad. I am only on 100 mgm once a day for 7 days and then will ramp up slowly to 200 mgm twice a day.

I did not have such strong bladder spasms today and am hoping it is because of the gabapentin. Always something to have to deal with. Thing that makes me mad is that I gained 12 pounds the past couple months from being less active and grazing more. You would think my body would have the ability to lose weight when I didn't feel good. Have a good weekend. Irish

[Kathy57]

Irish,

Sorry to hear about the new diagnosis of Fibromyalgia!  I hope the Gabapentin helps and maybe help with some of your other symptoms, too.  You are a great inspiration and role model, with your practiced coping skills and positive attitude. 

I am going to turn 60 at the end of this month.  I hope I can fight this as well as you have and hopefully be able to help others along the way.

Have a good weekend and I hope not many of us are in Florida right now😱😱. Praying for Floridians!

Kathy

[Deb 27]

Sorry about the fibromyalgia Irish. Ugh!  With us, it seems to just pile up, doesn't it? I hope the gabapentin will help everything and you'll feel much better.  It should help the bladder spasms.

Thank you for your prayers. The storm moved a little west putting us closer.  We are lucky to be north but we could still have some very bad weather and damage.  It's been a real mess for the state and it's just now starting to hit.