Author Topic: Personality bypass ...  (Read 228 times)

Beverley

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Personality bypass ...
« on: September 30, 2019, 07:07:23 AM »
Hi everyone.  It is a few years since I last posted.  Really I have been prompted to revisit you all because I feel I am going through a change at present.  I am nearly 67 years old and it is nearly ten years since I was forced to give up teaching because of SJS, five years into my diagnosis.  I was taking hydroxychloriquin (plaquenil) for 8 years but then my rheumy suggested I should come off it as recent research indicated it really did very little to help and had side effects which could make the patient feel worse.  I had been questioning whether it actually did anything, so over a period of 6-8 months, I reduced and then stopped taking any anti-inflammatories. I really didn't notice the difference. I use eye drops, pessaries, mouth spray and emollient for my itchy skin, but the only internal meds are paracetamol and/or codeine if my arthritis (I have osteo as well) gets very painful.  I should have both knees replaced but have managed to avoid it so far with lots of physio and keeping very physically active.

That's where I am now so why am I here?  Well, I wake up every morning groggy and in pain.  Mostly knees and back, but all over.  I seem to be permanently exhausted and, quite frankly, I am grisly.  I am cross.  I am quick to be violently annoyed.  My digestion (never very efficient) is rubbish, my bladder reflects my mood - irritable!  I just feel that I am loosing my grip a bit.  It's not massive, or dramatic, but it impacts on me every day.

So there you are.  I am doing my usual Beverley trick of only coming on when I feel I have no-one else to talk to who even begins to understand.  At my age most people respond with 'Oh I know.  We're all getting that way aren't we.'  And to be honest it feels churlish to imply that I am any different, but despite not having any serious additions to my condition and being relatively active (albeit I pay when I've done too much) I am just tired of the nagging aching, pain and knackerdom, and my personality transplant.  I don't know where the temper and impatience and aggression comes from and I don't like it!

Love to you all.

Carolina

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Re: Personality bypass ...
« Reply #1 on: October 01, 2019, 06:50:45 AM »
Dear Beverly,

I don't have answers for you, and can only share my own experience.  I'm 77.

1. I wake in pain every morning and must sleep at least 8-9 hours or more in order to wake
    up feeling reasonably rested.

2.  Both my knees and my right shoulder are bone-on-bone, and I'm seeking second opinions for
     joint replacement surgery at present.  I have severe osteoarthritis everywhere.

3. My list of medications is long, but each plays a vital role in my health:

    1. Pilocarpine (generic Salagen) for severely dry eye/dry mouth.
    2. Atenolol, Lipitor, and a diuretic for severe Coronary Artery Disease (20 years out
        from 2 stents placed in my heart)
    3. Low Dose Naltrexone for pain (I cannot take NSAID or Codeine type medications)
    4. Low dose Medrol (Methylprednisolone) so I can tolerate IVIG every 4 weeks
       (Immune Deficiency called CVID)  Without IVIG I have constant infections.
    5. Gabapentin for nerve pain (all of my skin has small fiber neuropathy which makes my
        skin feel like it is on fire (yes, really). A rather large dose of Gabapentin several times a day
        works.
    6. Wellbutrin, an antidepressant, for both mood and pain.  Cymbalta was my best, but
        after six years I developed a side effect which stopped me from taking Cymbalta. I have
        taken antidepressants since 1988 when Prozac came on the market.
    7.  Topical Estrogen, daily, for the last 20 years or more.  Increases my sense of well
         being and emotional stability.

4.  I see a therapist every week, and I have seen my current therapist for at least four
     years. I have had therapy (Psychiatrist or other professional) most years since my early 30's. 

5.  I exercise regularly (the Nu-Step doesn't hurt my knees) and exercise in a warm pool is
     essential to my well being.  Meditation is also part of my wellness program.

6.  I am seriously disabled.  I wear leg braces and walk with a walker.  My Immune
     Disorder not only fails to protect me from infection, it also attacks my organs/systems, mostly
     causing nerve damage.  It damaged my moisture system, which is why I have 'Sjogren's'.  My
     legs, skin, lungs, and gastrointestinal system are also damaged.

7.  Last March my husband and I sold our house and moved into a Senior Living Community.
     Since I can no longer drive, I was 'trapped' in our house most of the time.  Now I can move
     freely throughout our facility.

Perhaps seeing a therapist and taking an antidepressant would help with pain, aggression and anger.

Regards, Elaine

     




Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

SjoGirl

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Re: Personality bypass ...
« Reply #2 on: October 02, 2019, 12:27:37 PM »
Oh I have been here

"That's where I am now so why am I here?  Well, I wake up every morning groggy and in pain.  Mostly knees and back, but all over.  I seem to be permanently exhausted and, quite frankly, I am grisly.  I am cross.  I am quick to be violently annoyed.  My digestion (never very efficient) is rubbish, my bladder reflects my mood - irritable!  I just feel that I am loosing my grip a bit.  It's not massive, or dramatic, but it impacts on me every day."


I came to realize that being in pain makes people nasty, it just does. Once I was able to control my pain, mostly through Celebrex for a long time and now back down to Tylenol, I was a much nicer person!

Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Kathy57

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Re: Personality bypass ...
« Reply #3 on: October 02, 2019, 02:01:38 PM »
Dear sjoggie friend,,

I?m concerned that you stopped taking the Plaquinil!  I hadn?t heard that it is not effective?  I?m thinking that maybe your increased fatigue and pain may be caused by that?

I swear that Plaquinil has helped both my fatigue and pain!  Is it a cure?  No.  Not by far, but I believe it has made a huge difference in my life and I would be loathe to stop taking it.

Can anyone enlighten me on this?

Having said that, it sucks to feel so badly!  I hope you get some relief soon.  You certainly aren?t alone here.

Kathy
« Last Edit: October 04, 2019, 11:29:16 PM by Kathy57 »
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

Carolina

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Re: Personality bypass ...
« Reply #4 on: October 02, 2019, 03:08:25 PM »
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Kathy57

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Re: Personality bypass ...
« Reply #5 on: October 02, 2019, 08:31:25 PM »
Elaine,

Okay I tried to read through this study and from what I get, it only involved 215 patients and they varied with how long they even were treated with the Plaquinil.  It varied from 12 weeks to two years.

My point is that I didn?t start to feel the effects of Plaquinil until I had been on it for 6 months!  6 very LONG  months, I would like to add.  I really question this study.  I don?t think it involved enough people and it?s unclear how long these people were even treated with the Plaquinil.

Also, I felt even more improvement after 12 months.  I can say that it helped a heck of a lot with my musculoskeletal pain and I do feel it has helped me with fatigue.

I?d be interested to know what others think.  I have been wanting so much to talk to my rheumatologist about Rituxin because I have read that others have had good luck with it. 

I think my rheumy thinks I?m doing fine on the plaquinil.  I?m afraid to rock the boat.  Of course I never feel normal and think I may never get there again.  I wouldn?t mind feeling even better than what I do now.  Wouldn?t it be nice to feel like we used to!

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

Beverley

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Re: Personality bypass ...
« Reply #6 on: October 03, 2019, 02:19:47 AM »
Thank you folks for taking the time to read my post, let alone reply. Elaine you are just what I needed - someone much worse off than me proving you can just get on with it. Also your use of counselling and meditation interests me. I use mindfulness and it does help but sometimes I would just love to speak to someone. Do you find that with so many meds you have to start treating their side effects?

Kathy, I found plaquenil made a difference when I was working but less when I was not and side effects were troublesome. However I do think I need to find some replacement.

Best wishes to you both.

Carolina

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Re: Personality bypass ...
« Reply #7 on: October 03, 2019, 06:28:36 AM »
Hi, Beverly,

Talking with someone helps me sort things out.  Just 'saying things out loud' helps me.

The risk of developing some side effect eventually, does increase with the number of meds.  But I can't stop any of them without clear 'symptoms' reappearing.  I have had to 'change' medications because of side effects, one serious side effect for a medication didn't appear until year 6!

Hi, Kathy, I agree the study sample was far too small.  It looks like larger, longitudinal studies have not been done, with control groups and placebos. The real key is how you are responding individually.   The bigger studies usually exclude the 'outlier' results, and focus on the middle of the bell curve.  Since we are 'outliers' by definition, even the larger studies often don't reflect our reality.   Even the most 'scary drugs' may be just what we need, but we'll only know by trial and error.

I meet so many people that are really almost terrified of taking 'drugs' and of having surgery.  And yet so many medications and surgeries are essential to my well being.  So I can only speak for myself.

Regards, Elaine

Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Kathy57

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Re: Personality bypass ...
« Reply #8 on: October 03, 2019, 07:43:02 PM »
Elaine,

Thanks for your valuable input.  It?s so good to get other stories and experiences.  You have been such a wealth of information.

Thank you.

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.