Hopeless and Full of Fear

[mollie carey]

 I have posted on here a lot lately, and I'm thankful just to have a place to go right now to put my fears out there. Most of my friends are healthy people and I can only tell them so much about what I'm going through. The rest of it I tend to keep inside but I feel it's taking a toll right now. I feel hopeless~ like there is no point, like I don't care what happens to me sometimes. I have fought autoimmune disease since I was 32, 22 years now and feel a great deal of anger about what this disease has taken. I usually remain positive but right now it is become very hard. My son got married two weeks ago I had planned the whole event in the months leading into it I started to have what I believe is neuropathy in my feet, I injured my back ~had multiple muscle issues and barely made it through the wedding, and since then just find myself crying and feeling isolated knowing that I likely have a new issue with the neuropathy but also knowing that when I was diagnosed I was told I would have a very aggressive case due to my high Number of  ANA's and SSA's as well as rheumatoid factor and low complement level which now I read low complement level pretty much is an indicator of the population with the worst of this disease so I find myself fearing what is coming. Fear, seems to be crippling me right now. I'm afraid to try new drugs because of previous allergic reactions. I'm afraid to eat new foods because of previous reactions and I tend eat the same foods over and over making it hard to go on a diet for autoimmune disease. I had a very traumatic allergic reaction where I almost died and it took days for them to get it under control, it kept coming back after they treated me for it and they have never seen anything like it, and after being told that at the hospital many times I felt like the freak show basically. Now I fear food, medicine, anything that my body might be allergic to, I've always had crazy allergies, and having immune deficiency, which goes along with he allergy picture. Today I saw my OB she hugged me and tried to tell me this was a rough spot and I didn't believe her ~she prescribed HRT and said it might help me my depression and energy and for sure with my osteoporosis but of course I'm afraid to use the patch. Has anyone out there been crippled by their fears before? I did not used to be like this. I would take any drug try any food, always had hope but it seems that after this reaction three years ago and my body behaving in such an abnormal way that I no longer trust my body at all ~even just my autoimmune disease body. I'm having a bad day. Wondering if the patch of HRT has been helpful for anyone or hurtful but also wondering if anyone else suffers from low complement levels, one doctor felt I had lupus because of this, while the other doctor said it could be Sjogren's with the aggressive type, I also got the butterfly rash but still one doctor said that could just be Sjogerns, also has anyone else ever suffered what they call of PTSD episode and then basically been crippled by their fear of it happening again? I am sorry to sound pathetic, I feel like I have lost part of myself, and I've always been able to keep myself relatively up in spite of many many things going wrong so this feeling scares me and confuses me.

[araminta]

I'm so sorry you're feeling low.   I don't have all the exact same symptoms as you do, however I get terribly fed up with feeling (and looking) so tired and run down all the time.

Your doctor could well be right that you are going through a flare, I wonder if the stress of arranging your son's wedding took more out of you than you realised.   

I can't comment on the HRT, perhaps others on the forum can share their experiences.   

It sounds as if your anxiety is becoming as big a problem as the physical symptoms, and you need to do something about that.   Could you have some counselling?   I believe some members here have had chronic illness counselling, which has helped them a lot.   Personally I find mindfulness/meditation very helpful, if there are any courses in your area it might be worth going along.

I hope you feel better soon.

[Joe S.]

Take heart, it is not the end of the world. It does get better. It took me 12 years to get a diagnosis. The first sign that I had was a moth across my face. Not a pretty butterfly.

I had fibro first so I had some skills in dealing with a flair. I had been doing exercises in "Feeling Good" by David Burns for anxiety and depression (PTSD). I had been to a pain clinic and learned to breath through the pain to short circuit the flair.

I meditated to help with the pain. I connected my breathing with the "I am, Calm" aphorism to help manage my pain.

You can check my signature for some of the supplements that I am taking. before you try any check for side effects, counter indications, and drug interations. I had bad reactions ton MTX and plaq the "normal" drugs.

Things can get better with management. While I have issues with the sun, I am taking a 5000 mile car trip this summer. I have SPF 50 clothing to help me.

[wendyoh]

Mollie--sorry to hear this--I have had issues for over 25 years now since age 29 and I get it, ya feel robbed

if you can find a practitioner who does frequency specific microcurrent in your area and have not tried that I would recommend giving that a shot, this last year it has been a help to me with symptoms....I had to experiment a lot tho and get a home unit so could experiment more and finally figured out just a couple seconds a day is the charm (most people could do a half hour or hour or more)

[Carolina]

Dear Mollie,

You just went through a major life event (son's wedding) and that has been enough to throw me into a tailspin, in itself.  And also cause me to 'reassess' my life.  The whole "Sun rise Sun set' quickly flow the days, major change. 

Plus, of course you began to have issues with your feet after a back injury.  One of the hardest things I deal with is not knowing what is causing what, and what is going to get worse, and what the h..l I'll do about everything.  If  I even KNEW what everything is.

And that is what is so frightening.  Having terrible reactions to medications and foods...having signs that indicate the path ahead will be even more difficult.  Scary scary stuff.  And not being able to see a way ahead.  Which is part of the problem...anticipating and imagining the future. 

Can you tolerate prednisone or methylprednisolone?  These drugs can be administered in a taper pack and can interrupt  my flare immediately.  Within hours.  Once the pressure from an inflammatory flare is reduced, I can feel the fear and pain lift.

I use estradiol gel (which is what may be in your HRT patch, plus progesterone if you still have your uterus).  I consider that it helps my 'mood', skin tone, and so on.

My complement levels were well within the normal range on the only test done in 2011, so I have never paid much attention.  Of course I don't have any auto immune disorder factors since my Immune Disorder isn't related to auto antibodies.

I suggest breathing and relaxation techniques.

See a counselor.  I have seen my counselor WEEKLY for the past three years, or more.  I could NOT deal with the level of disability and chronic pain I experience without the emotional support and reality testing that I do weekly with my counselor.  I have mostly been IN counseling for  the past 45 years. 

Exercise in a pool, warm water if possible.  Our bodies must move, and movement helps take me out of my 'head' where all the fear resides.

We have almost all of us lost part of ourselves on this journey.  The loss is real and the grief is real.  You are where we all are from time to time. 

You will gain some balance again.  Perhaps in a new place, the 'new normal'.

Get the help you need from as many sources as you have, Mollie.

Pet your dog or cat.....

And find someone who needs your help, your shoulder.  Find your own strength...because you do have it within you.

Hugs,  Elaine

[mollie carey]

Thank you so much for your kind words and your suggestions ladies. You are right this is been a very difficult time, I'm not sure why it seems to have really made me feel a sense of dread and I don't like it. I am going to start counseling. So hopefully that will help ~ usually does. I take 10 mg of prednisone, I'm thinking of going back to IVIG instead of subcutaneous because it seemed suppress my immune diseases. You are right a lot of it is the fear of the unknown and reading about all the things that happen to people you start to have things happen to your body and wonder is that what this is? I'm just thankful I have this place to come and read stories and ask advice because in the real world not a lot of people are so understanding or have the patience to listen to others problems. Thanks again for your insights and ideas, very helpful, hears hoping this is just a big bump in my path.

[Polly]

Mollie,

That "feeling of dread" may be anxiety. I've known several people who felt that so strongly that they were unable to do anything and it was diagnosed as anxiety (in one case, it was depression). Your therapist will probably be able to handle that pretty quickly, so have hope!

If you're taking 10 mg pred every day for some time (more than a week), it may have shut down your own production of cortisol and now you could have a low cortisol level, which can really mess with your emotions, cognition, everything (could also cause a "feeling of dread". If you've been taking it for long, ask the doctor who prescribed it. Maybe it's time to taper down? Or get a cortisol level test, at least?

As others have noted, better than I can, you've recently been through a lot!! Be easy on yourself, please. Try to get more sleep, put yourself first, and breathe, Mollie, breathe!

[warmwaters]

I hope you find some assistance. Be gentle with yourself.

Small request - breaking up your posts a bit would help me a lot with being able to read to. Thanks.

[irish]

Be aware also that these autoimmune diseases can overload us with so many issues that it is hard for our body to adjust and accept things. It is hard to maintain a "normal" life when we feel miserable.

I learned many years ago that I had to live a life that was mostly about my kids and hubby cause I did not have the energy (both physical and emotional) to cope with a lot of stuff. I have had depression since in the 1960s when I also had autoimmune symptoms. I have been on regular antidepressants since 1991 and accept that this is what makes my life better and helps me do the things that I do. Pain and discomfort added to anxiety and depression will knock one into a tizzy every time.

Be aware that Sjogrens and Lupus have a very high degree of anxiey and depressive symptoms and usually need to be treated. The chemicals in our brains are low. Our brain secretes many of these chemicals and I still maintain that Sjogrens is the culprit because it affects the secreting glands in our body.

When we have depression and anxiety and pain and heavens knows what else cause there is always some new symptoms lurking in the background, the antidepressants help us to sleep and help with some pain control, help with our diarrhea, constipation and nausea also and many other issues.

In recent years the researchers have found that our gastrointestinal system produces more serotonin than our brain does. If you hear of the gut/brain connection this is what they are talking about. Never turn down help from therapy or antidepressant drugs because you may lose out on a chance for a better life. Also, be aware that you may have to try many different meds until you find the one that helps you. Also, start out at a low dose and build up. Doctors frequently don't understand how hard it is to start out a therapeutic dose right off the bat it is enough to scare you off of the meds for ever. I have tried so many different antidepressants with bad luck and always end up back on the one I first started on. My doc laughs at me and with me as I am one of his most drug sensitive patients and he is respectful of this. Good luck. irish

[Carolina]

Dearest Irish,

Your words of wisdom mean so much to me. So honest, knowledgeable, and 'real'.

I realize that my most difficult problem is that I can no longer take any antidepressants.

The SSRI/SNRI anti-depressants, which I took as soon as they came on the market in the 80's until 2017 when they suddenly caused both myoclonus and syncope.  The syncope is intolerable.  Even walking holding on to my walker, I just crash to the floor.  I was falling more than once a month, and miraculously was never seriously hurt.

I tried Amitriptyline in 2017 which caused the fall that fractured my lumbar spine.

So after 30 years I am 'on my own'.  And I know that I am depressed, although I do my best to manage it.  The depression is caused by many things, but is mostly chemical imbalance and inflammatory response.

It has been so hard to lose the wonderful help that first Prozac and then Cymbalta gave me, both with mood AND with pain.

But we forge ahead.....and that is the best we can do.

Hugs,  Elaine

[irish]

Caroline, I am so sorry that your body doesn't want to accept the antidepressants anymore. Have you investigated any of the natural meds and foods to see if any could help you some?

So many of the meds we take make us lose our balance in some way. They all seem to have a certan amount of effect on our balance. I just switched to a different blood pressure med and had issues with weakness and balance the first couple of days. We have to be so careful not to fall and break something. We just hang in there and do the bet we can. Hoping you can have some comfort and enjoy some activities with friends and family this summer. When the weather cools off that it. Terrible heat just knocks our socks off doesn't it. Also a hoping your hubby can maintain his health status so that your life together isn't too upset. My thoughts and prayers are with your both. Irish

[genko_b]

Hi Folks:

It has been a while since I posted. Not to hijack this thread, but Carolina/Elaine, you may want to get your vestibular function checked as well - I have autoimmune vestibulopathy which messes up my balance. That may be aggravating any side effects of the antidepressants. Worth checking it out.

Mollie I hope you are able to find something that lessens your anxiety. There is lots of good advice here to try, and great support. This disease is for the long haul and sometimes that is too much for any of us to handle at any given time. It is great to have this community to hold us up at those times.

Take care,

Genko

[irish]

There is some truth to the autoimmune component of balance. I have 3 full time balance issues: autoimmune related to Hashimotos and Sjogrens plus postural vestibular disease with the calcium deposits that have to be dealt with(where doctor rotates your head and body to move the calicum deposits) plus I had a Right labrinthectomy and nerve section which destroyed 1/2 of my balance.

After I had that surgery I went to Kenny Rehab in cities for retraining my brain in a new way of balance and it did help. I had no balance at all post op. When any of us have all these balance issues and then have a virus or a med that affects balance it really makes life more difficult for us.

This rehab is called Vestibular rehab and didn't take many trips to cities as most of exercises are done at home throughout the day. Take care. Irish

[Nancy1950]

Dear Mollie,

I second what Irish said about therapy and perhaps an antidepressant. If I hadn't started taking Zoloft years ago for the fatigue of what was diagnosed at that time as fibromyalgia, I would probably have had to go on disability. The feeling of despair and constant fatigue nearly did me in. And I agree with the person who said to insist on starting out slowly with whatever medication you are given. Doctors always want to slam you right into the "effective" dose without considering that many of us have altered metabolism of drugs. What is considered effective or "therapeutic" dose is based on studies usually done on adult men. So if they tell you to increase your dose in one week, I always stay at the lower dose for 2 weeks!

Good luck and keep writing - writing is therapeutic! (I'm a therapist)

[Carolina]

Alas, the myoclonus (sudden fairly brief shaking of the left side of my body) and syncope (sudden collapse to the floor) were completely caused by the SNRI (Cymbalta) and later by the SSRI (Prozac).

As soon as I stopped taking the drugs, the myoclonus and syncope disappeared entirely.

I have had NO return of either symptom independent of the use of the drugs.

I don't have vestibular problems (I'm so glad) and my gait and balance issues are due to profound peripheral neuropathy.  My lower legs are severely atrophied at this point and I have braces on both legs for foot drop, and walk with a walker, as well.

I have had several twice weekly PT series over the past 4 years, to try to deal with balance issues.  I am actually strong in my muscular tests (I exercise several times a week, both in the water and on the Nu-Step at my fitness center). 

What the general population, including doctors and physical therapists, seem find hard to accept (in spite of their training and medical knowledge) is that no amount of exercise or physical therapy can restore nerves that are completely destroyed.  I am fortunate that the PN does not affect my arms and hands, because I find it hard enough to deal with immobility from damage to my legs. 

However, I know that all of our abilities can disappear in a heartbeat from an accident or a stroke, and that all of our 'abilities' are gifts we take for granted until they are gone.

I have found that Low Dose Naltrexone is really a gift that is controlling my pain level, not perfectly, but at a manageable level.

I do wish, however, for the relief of the pain of depression, which is bearable but ever present.   For me depression is both a general sense of pain in my chest and throat, and a kind of over reaction of fear and anger to events and people (read husband) in my life.

Antidepressants took away both the pain and the emotional over reactions...gave me a sense of distance and calm.

So now I am using my counseling sessions to help me find my way through each week, to gain some distance using techniques to identify that my reactions and feelings are mostly caused by my own current core of depression.

Regards,  Elaine