Author Topic: Hello Very Low and on verge of giving up.  (Read 322 times)

Honeybee

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Hello Very Low and on verge of giving up.
« on: October 10, 2017, 04:04:10 PM »
Hi
I am Honeybee in the Uk.
Am 52 and have  severe dry eyes for over 12 years but have had remissions, but alas this last flare has threatened to take my sanity.
Antibody negative and they failed to come to a conclusion some years ago when they carried out a lip biopsy as they could not get enough of the tissue to actually look at.
I do not post on forums anymore and have had to work up the courage to visit as I have gotten very despondant with some of the stuff I have seen as i find it way too depressing and i am, well, out of fight. Have been treated with all the usual stuff by the eye doctors but am now scared as I am most likely in the menopause and all the stuff on the net points to this heck just getting more hellish. No point in trying hrt as the evidence suggests it simply worsens dry eye and in the UK we do not do bio identicals and am unable to afford them even if they were appropriate.......
Developed severe bladder IC 20 years ago and I still have bladder ops to help. Got to see a lovely rheumatologist in the UK who although said it could well be sjogrens  but said I would probably see no improvement in eye symptoms.
So with being double plugged 5 years ago, things did improve to a tolerable level until about 3 months ago when I was hit with the worst flare ever and a dry mouth which is pretty severe, although I have always had a dry mouth. I can deal with this with xylimelts etc and at least it does not stop me carrying on.
I am now terrified with evry thing I have read that the menopause will truly spell the end of any relief. Please can somebody possibly offer me some light at the end of the tunnel.
I have looked at other sites relating specifically to dry eye and although they are comprehensive they depress me.
I am plugged, on ciclopsporin for 8 years which to be honest seems to be now irritating them, pres free drops, gluten sugar free for 3 months, steroid drops intolerable.
Gp pleasant but says little can be done and i do feel that to be honest everybody has been doing all they can to help.
So my question is does this remit and flare even in menopause in relatiin to dryness which for me is the most distressing symptom?
Thankyou and apologies for a somewhat bleak post.
Honey

Scottietottie

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Re: Hello Very Low and on verge of giving up.
« Reply #1 on: October 10, 2017, 04:34:53 PM »
Hi Honey  :)

I'm in the UK too and do not have positive blood work. I got dxd over 10 years ago now with menopause, osteoarthritis, Hashimotos Thyroiditis and Sjogren's Syndrome - even though the bloodwork didn't support that - but was suggestive of Lupus. Symptoms more like SjS - dry eyes, dry mouth aches and pains and crushing fatigue.

It was a bad year! I was still at work then too. I couldn't tell what was causing which symptoms. I read a lot and as far as I can see a lot of symptoms of menopause, SjS and Hypothyroidism overlap. I couldn't figure out what was responsible for what. Like you - I felt very low at that time. I went through a sort of grieving period of health lost.

However - it finally dawned on me that although I had several new labels - I was the same as I was before I got the labels. Top priority - treat as many symptoms as possible. I decided NOT to go onto HRT because I wanted just to get menopause over with. I thought it might weed some symptoms out. My mother sailed through menopause and just enjoyed not having periods any more. I can't say I sailed though but am still not sure what symptoms were what. I still have awful hot sweats but it turns out thay, in my case, are caused by Omeprazole which I need to take for acid reflux.

I felt considerably better when they got thyroid medication sorted out and stabilized. Helped with depression and brain-fog. The rheumatologist gave me Hydroxychloroqine (Plaquenil) and that helped with pain and fatigue. I had a partial knee replacement which sorted out the worst of the OA. The rheumatologist referred me to an opthamologist and they sorted out eye-drops.

Aged about 58 I cut my hours at work and eventually retired when I was 60. Life goes on. I've sort of got used to stuff. I wish it wasn't there but I know it's not going to go away.

Take every day as it comes. You may be one of the people that HRT helps. We are all different. Have you had your thyroid levels checked? I feel at my very worst when it isn't balanced.
I also found this forum immensely helpful and supportive.I joined a menopause forum at the same time and a thyroid one. This is the one I've stuck with.

I hope you find it helpful too. Take it one day at a time. Do what you can do and if things are too much just don't do them. Push to get symptoms treated. The label isn't the be all and end all.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
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Never do tomorrow what you can put off till the day after tomorrow!

Joe S.

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Re: Hello Very Low and on verge of giving up.
« Reply #2 on: October 11, 2017, 04:48:46 AM »
I find management of triggers helps. Some of us have listed in our signature what we are taking. Before trying anything check for interactions, side effects and counter indications. I find that controlling the pain cycle helps:
1. Don't Panic - it makes your pain level worse
2. Breath - when we are in pain we hold our breath and this makes the pain worse
3. Meditate - I have a simple meditation that helps. I find a comfortable position, close your eyes and with your eyes closed look to the top of your forehead. As you breathe in think "I am" and as you breathe out think "Calm" try to keep this up for 15 minutes. If you loose concentration start again. Practice when you do not need it so it will be easier when you do need it.

Since I can not take normal meds, I use supplements to help manage my Sjogren's, Diabetes, High Blood pressure, Arthritis and other ailments.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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Kathy57

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Re: Hello Very Low and on verge of giving up.
« Reply #3 on: October 13, 2017, 01:11:44 PM »
Honeybee,

I think you got some great advice here.  I?m sorry that you feel so hopeless.  Menopause can be challenging but it does pass!  Remember that it can only last so long and then it will be through.

You will feel better when it is over.  I did take a small amount of HRT and you could try it.  You can stop taking it if you want.  I still use Premarin vaginal cream and find it very helpful. 

Be very nice to your self and put yourself first right now.  Do something good for yourself everyday and don?t feel guilty!  Talk to us anytime you want.  It does get better! 

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

Nomad

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Re: Hello Very Low and on verge of giving up.
« Reply #4 on: October 13, 2017, 09:42:54 PM »
I too take a low dose of HRT. I always remind the doc that I want it low dose for a variety of reasons

I would see a specialist re your eyes. There are more and more treatments out there.

I am always trying new things for my dry mouth. I find that I have to make adjustments.

I have found taking A B complex vitamin and D3 very helpful for anxiety/depression. I also think coq10 might help a little with dryness.

Keeping hydrated...drinking lots of water throughout the day helps me a little with dryness and energy levels.

It's important to rest when needed.
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

irish

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Re: Hello Very Low and on verge of giving up.
« Reply #5 on: October 14, 2017, 04:31:06 PM »
I am sorry that you are having such a hard time of it. Life with autoimmune e disease is not easy, but that also means that we have to keep on our toes in order to keep up with the latest treatment of our physical and our emotional needs. With the chronic illness we tend to get so bogged down with being ill that we forget that there are some good things left in life.

I will be honest with you and tell you that I am 74 years old and have had illness since age 21 or so. Finally diagnosed in 2002 with Bullous Pemphigoid a skin autoimmune disease,then 2003 with Sjogrens, 2006 with Myasthenia gravis, Hashimotos and immune disorders severely low t-cells and low IgG which caused me to have many, many infections over the years. I have had a few really weird infections also, one needing treatment for one year with 8 pills a day. In 2016 I was diagnosed with autoimmune ear disease and had to have monthly IV if 1000 mgm solumedrol for 5 months. I lost hearing in my right ear in 1998 and have moderate hearing loss in the other ear. I lost my singing voice in 1988 which was tough cause I loved to sing. Also had enormous amount of dental work and all my teeth pulled with dentures in 2004.

 I have had ovaries, tubes, uterus removed and a neuroendocrine cancer on appendix that was found and removed at the same time. It never spreads thank goodness. Had 2 carpal tunnel surgeries, nasal/septum surgery, ear surgery with my hearing nerve being drilled out with a diamond tipped drill(this destroyed 1/2 my balance), one submandibular gland surgically removed ands 2 oral surgeries. I think that it is. Since May I have been diagnosed with pancreatic insufficiency which cause problems with digesting food and is from the Sjogrens most likely, Inflammatory cystitis which is a very painful bladder condition with inflammation, spasms and incontinence--which I still have since June--- and about 2 weeks ago I developed a neuropathy which involves both arms, hands, into face at times and is painful and wanes and ebbs but never leaves. Pins, needles and loss of feeling in fingers but yet this still hurt.
During this time I took care of my hubby for many years at home and with hospice before he passed away in 2014.

I am not saying this to make light of your condition as we all have out bridges to cross. I just wanted you to know that life with autoimmune is not easy for any of us and each day we get up we have no clue what kind of a day it will be. The only thing I can say is grit your teeth, get the medical help you need, get some socialization when you can even if it is a trip to the library. I think going to the grocery store is a social event cause I am out among people. The more you work at hanging in there you will make your ability to cope improve. There may be days when life is rotten but at least you have a life. There are some things you can do that others can't.

I am finding that life is getting harder for me and I think it is not fair cause I am getting older, but guess what, that is the way it is going to be for me and I have to suck it up and keep going. None of us are failures at living with autoimmune disease, we just are on a path that meanders and challenges us every day. 

You are going to be fine, you will find some help cause you are going to make finding help an active part of your life. I know you will win this battle. It can be a very lonely battle in this life, but we are lucky to have this forum to visit and share with. Good luck. Irish

On occasions people on this forum are prone to think that we are special cause we hang in there and learn from our past. We just wish we could all get together for a party/gab fest.
« Last Edit: October 14, 2017, 05:19:23 PM by irish »

trejonina

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Re: Hello Very Low and on verge of giving up.
« Reply #6 on: October 15, 2017, 02:02:48 PM »
Hi,I have taken HRT for 15+ yrs. : Angelique by Bayer, on alternate days. Luckily there are no breast cancer cases in my family or me.Other types of cancer yes, a lot, but even so I haven't stopped it.I know two women drs : one takes it every day, and the other twice a week. We are 64 and + yrs.But there are lots of menopause supplements: natural. Flavonoids etc. Try them, it helps.

irish

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Re: Hello Very Low and on verge of giving up.
« Reply #7 on: October 15, 2017, 06:18:21 PM »
Some Gynecologists use estrogen vaginal cream several times a week or so. This helps curb some of the menopause issues without getting too high a blood level. Good luck. Irish

lorigacc

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Re: Hello Very Low and on verge of giving up.
« Reply #8 on: October 16, 2017, 05:54:04 AM »
Honeybee-
I could never do the hormone therapy because of the antiphospholipid disease I have...so menopause had its moments, but I made it through. Hang in there and take one day at a time.

Irish -
   You are a very strong woman

Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
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irish

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Re: Hello Very Low and on verge of giving up.
« Reply #9 on: October 16, 2017, 09:49:24 PM »
Regarding my previous post regarding the estrogen cream......I don't really know if the gynecologists use it themselves, but I know that they prescribe it to their patients.  I have off days a lot. Irish