New, Alone and Frustrated

Welcome Introductions
21

I'm only familiar with Frederick Community Action Agency

not sure if that's too far for you. They provide food, shelter, medical care, housing, and other forms of assistance to families and individuals that are low-income or homeless.

I'm glad you've been able to see doctors. I had a hard time at first finding a doctor to treat and diagnose my fibro.

Do find out what the risks are for taking predisone long-term. I was taking trazodone and something else(can't remember) and I developed spasms afters being on it for 2+ years. As long as you know the risks and are willing to deal with them.

Hoping you're able to get the help you need ASAP

22

Hi Dani,

I am sorry about your situation. I can relate because I had the misfortune of that experience at the same time(December). It was terrifying. Even though I begged for help at the transitional center they sent me and my 19th month son out the door. I had been working and my boss let me go with a generous paycheck and I was on unemployment for several months before they kicked me off. I never even bothered with disability because I had heard so many people had no success with fibromyalgia. The doctors diagnosed me with bipolar and that was how I was accepted. I am sorry I live in Massachusetts and I am not familiar with the DC area. I hope there are other members that can provide you with more information

23

One of the best end runs for disability is to work with DDS in the DC area.

http://dds.dc.gov/service/vocational-rehabilitation-services-rsa

IF they can't get you fixed up, they will speed up the disability process. They can help with everything including housing. In the meantime call 202-■■■■■■■■. That is the Salvation army emergency assistance command. They will get you fixed up pronto.

The thing with FMS is there is a pretty good "gap Period" Things seem hopeless including work, but as you start to pull things together, its amazing what one CAN do with some good support and back up. As others have mentioned the most important thing you can do is keep doing. EXERCISE every day. Its excruciating, we know. BUT it not only helps reduce pain over time, it fights depression better than anything.

Talk to your rheumy about a low dose Predi. 7.5 mg or less daily has been found to be as effective for many as high dose 30mg+ and it doesn't effect the adrenals.

The effect of FMS at its worst is NOTHING compared to what happens with adrenal shock from to much prednisone. You lose total control of pain, and it can take years (if ever) to regain something close to normal function. Trust your doctors on this one and not Dr. Google. It takes only a week in somecases to shut down natural production.

It will work out. Check in here often, we are your new family.

24

Oh Dani, I too am so sorry this is happening to you. I do not live in that area and have been reading the replies to your post. They all seem like they would be helpful. I do know that as hard as it may sound, even when you are so fatigued that it seems you can't move, move anyway. It really does help. I am fortunate in that I live in a very rural area and I have a younger dog so we walk everyday that I can. I also do gentle yoga. Again, I am fortunate as there is a fabulous teacher that I go to once a week for the Yoga. In the future, once your housing situation is fixed, you may want to try these things. I wish I could be more help to you.

I used to be a Social Worker. Please contact your local Social Services office to obtain one. You definitely need someone in your corner who will advocate for you.

I am on a medication, called Naltrexone. It has been a godsend as it has also helped with my IBS. I live in a climate that is cold and snowy so even the Naltrexone doesn't help when there is a low pressure system coming in or it is damp, which it has been a lot lately. It may be an option you may want to look into. I have no side effects. My Primary doc wants to put me on Lyrica but I don't want to be on that med. because of the side effects. Unfortunately, the Naltrexone isn't covered by any insurance as it is a trial drug that has been around since the 70's. It has done wonders for me. I have to pay for it out of pocket so for right now, that may not be an option for you. (The cost for me right now, is $33.00 per month). I wish you only the best. Keep checking in and letting us know how you are doing. Your family may not be there for you, but this site is always there for you. I have found it a god send. I will keep you in my thoughts and in my heart until you have found a solution.

25

DEAR DANI, UNTIL YOU GET USE TO MY POST REPLY, I MUST TELL YOU I USE CAPS BECAUSE I CAN BARELY TYPE WITH THE PAIN IN MY FINGERS AND WRISTS. FORGIVE, BUT THIS IS THE ONLY WAY I CAN REPLY.

STERIODS, ARE A TWO BLADED SWORD. THEY WILL HELP SOMETIMES WITH PAIN BUT, REMEMBER SOMETIMES THE DRUGS ARE JUST AS BAD AS THE DISEASE. THEY MAKE YOU SWELLL, RETAIN WATER AND WORSE IS GAIN LOTS OF ABNORMAL WEIGHT. BE CAREFUL, THEIR SHOULD BE AN ANIT- MAILIA DRUG BUT THAN AGAIN ANOTHER SIDE EFFECT HAVING DRY EYES.

BUT, TODAY MOST PEOPLE HAVE DRY EYE BECAUSE WHEN THEY ARE ON THE COMPUTER THEY DONOT LINK ENOUGH!!!! THE MOISTURE IS ONLY WHEN YOU STOP AND BLINK ENOUGH IN BETWEEN TIMES ON THE COMPUTER. MAKE SURE YOU HAVE A BEAUTIFUL CHRISTMAS AND BLESS YOU.

LOVE ALWAYS MICKEY ((((((((((((HUGS)))))))))))))))))

26

I am really overwhelmed and grateful for all of the replies to my posting. I really appreciate all the good advice and suggestions which I will follow up on. Things in my life are really crazy right now, but glad to know there are still some good and caring people out there. Thanks again to everyone and I’ll keep you posted about the outcome of everything.

27

That's what we're here for, Dani. Keep in touch.

Seenie

28

I have been diagnosed with Fibro over 20 years ago. It is a struggle, and finding meds that help get you over the hump does take time. I was a nurse for over 20 years, and chose not to do steroids because of the side effects. Pain is a symptom, and can be dealt with I have found. Prednisone long term can and does cause serious long term health implications that add onto the problem of Fibro. Movement IS the key, but inorder to feel well enough to move, the pain and exhaustion needs to get under control; I started out with neurontin, Citalipram HCl, and various pain meds. Sleeping meds also. A doc prescribed me long acting Morphine twice a day, and short acting prn 2x daily. That controlled the pain, and I was able to start moving, I am down to my pre pregnancy weight, and fairly active. I have learned to keep moving, no matter what. Yes, we have also had hard times, lost our home twice, and for a time live in a RV for a few months, 5 of us! Stressing over things make the symptoms worse, and does not change your situation. Roll with the blows, realize that life does go on in spite of difficulties and illness. Many churches have programs to help those in need. St. Vincent DePaul is one of those here in my area. I was not able to get on disability, I was told I should have applied years ago, and I am told I would have to work 6 more years to get it now. Even when hubby was on workmans' comp, and then his unemployment ran out, they said I could not get SSI because he had made too much. We did get through this, my children are adults now. We had holidays when all we had was each other. We all got through it. Things come and go, but family is what is important. (our extended families did not help, it was us and our kids). Before I remarried I was a single mom, and realize the struggle. Nothing is hopeless. Do not despair, as despair is the spirit killer, causes depression, and depression worsens the symptoms. Take each day as it comes, do not worry about the past as it cannot be changed. Work with you have for the present, as tomorrow is another day, and that will work out when you reach it. There were times we had to seriously downsize living accommodations to be able to afford them. Buying fresh food is cheaper, get a crock pot from salvation army, throw stuff in at night, and have nourishing soup all day. Beans and rice are good options, low cost and nourishing. Churches and cities have food distribution programs that help. I do not know about the area you are in, but never give up hope, and realize that the pain will not kill you, but the side effects of the meds might one day, so be careful what you use. I know that it can be difficult to try something new in that it may not help; yet something new just might. Nothing will ever take all the pain away, but you can learn to live with it, work around it, know when to rest, and when to work. ALWAYS keep moving, as this is important to keeping up your strength, flexibility, and it helps prevent the complications of inactivity which can be as serious as blood clots, pneumonia, and weight gain. The heavier you get, the harder it is to move, and the less you want to move; been there done that, no fun. It is easier to stay healthy than to undo bad habit that have led to weight gain and secondary health issues.

29

Hi Dani, I have had fm since before it was recognized. I am now 68 and have been fortunate to manage pretty well over the years. I have taken Cymbalta for seven years and Neurontin for two. I don’t think I saw that anyone else takes the Neurontin. For me, adding it was extremely helpful. I would seriously warn you against the prednisone, particularly since you are young. It really should only be used as a rescue medication.
Now, you said DC or Maryland. I was born in Bethesda. I don’t live in the area now but I have family in Arlington, Front Royal and Frederick. I would be more than happy to contact them to see if any of them might be able to assist with emergency help as well as long term suggestions. My brother in Arlington has extremely strong ties to his church so their could be some help or suggestions from there. And, he is quite well aware of fm. Let me know.

Barb

30

Another side effect of prednisone is cancer. Use for more than a month is highly discouraged. But yeah, it works. I’m on cymbalta and neuron tin/gabapentine. But the med that is working for me is morphine sulfate aka MScontin. Good luck. You are in a bad situation but I do not have any good suggestions. Yeah, you should not be fired for an illness. At the least you should get unemployment payments. Apply for that for starters.

31

Thank you Barb for offering your local contacts. I currently live in one of the suburbs in Maryland. I don’t currently have any strong connections to a church, and was told by my sister’s church that I had to be a tithing member in order to get emergency assistance. My sister tithes, but that wasn’t good enough to get assistance for me. And my sister won’t let me live with her, even though she lives a few minutes away because she doesn’t want to deal with the burden of my illness. I don’t want to be a burden to anyone but can offer to work or do housekeeping or volunteer in exchange for a room. I am also hoping to connect with a church family to have the support of a family and perhaps some spiritual guidance. So if its not too weird for them, you can add me as a friend to talk offline about local resources your friends or family may know.

32

I understand the frustration of dealing with such a nasty illness. I was on a few Medrol dose paks that help but the steroids create other side effects. I was then on Lyrica but it caused me to gain a lot of weight. I was at a loss to control the pain. I started taking a regimen of coconut oil, glucosomine, fish oil, turmeric, and msm all in tablets. since you are limited in income the main one I would invest in is the turmeric pills they reduce inflammation it will help a lot of the discomfort.

I live in Illinois so I don't know the programs available out there, I have a disability ID card my doctor filled a form out and I obtained the card and the handicap placard for my car. it's nice to have when a flare up happens. the Americans Disabilities program might have some resources. I know there are a lot of laws that protect from getting fired. I was out of work for 8 months when it first started they ended up sending me a desk that can go up and down and a new chair - I do a desk job all day so that helps. this was due to the ADA. I heard good things of Cymbalta and Savella.

My main relief is figuring out what sets it off. once I can pinpoint it better I try and avoid the triggers. If it flairs to a point I can't handle I take a bath in 1/2 cup baking soda, 11 drops of lavender oil and 1/2 cup Epsom salt. it really helps.

It's a lot to handle but don't let it overtake your happiness. You are in control. Once you get your living situation better, you should fight for SSDI.

Dani said:

I am really overwhelmed and grateful for all of the replies to my posting. I really appreciate all the good advice and suggestions which I will follow up on. Things in my life are really crazy right now, but glad to know there are still some good and caring people out there. Thanks again to everyone and I'll keep you posted about the outcome of everything.
33

You’re right Kathy, prednisone is one nasty drug. For short-term relief it can really work magic, but most doctors are reluctant to prescribe it long term because of the bad things it can do to you. Cancer isn’t one of them, though. Here’s a list from the Mayo clinic –
http://www.mayoclinic.org/steroids/art-20045692?pg=2




Kathy said:

Another side effect of prednisone is cancer. Use for more than a month is highly discouraged. But yeah, it works. I’m on cymbalta and neuron tin/gabapentine. But the med that is working for me is morphine sulfate aka MScontin. Good luck. You are in a bad situation but I do not have any good suggestions. Yeah, you should not be fired for an illness. At the least you should get unemployment payments. Apply for that for starters.

34

cortisone is the only drug that has worked for me. I have received 120 mg of injected kenalog every 90 days for 5 years. I did have to get cataracts removed, and now have osteoporosis. the doctor and I spent quite a bit of time discussing the risks vs the help I got in pain relief. I was willing to take the risks. I do not regret it. some of the other meds cause terrible hallucinations. tremors. depression. etc. now my pain killer is Norco and I go as long as I can without any kenalog, and when the pain level reaches a 10 which is about 6 months, I get a shot, but its 60 mg instead of 120. its really important to have a doctor who will listen and include you in the decisions.

35

I hope you get your wish. I have faced homelessness numerous times, it's our worst fear.

36

Hi, sweetie. I wish I lived near you so I could be of more help. Please do file for unemployment. Even though you’re probably extremely fatigued, keep fighting for disability. Those who jump through all the hoops win. Lyrica worked wonders for a few years for me. Eventually I had to switch to gabapentin, which still works great. If you can, go to a library and Google shelters/emergency housing in your area. Also see if Legal Aid can help with wrongful termination and eviction. Hang in there. It WILL get better.

37

I am so sorry for all your additional stressors. they only make things worse. I have had FMS for 30 years. Just finished a 10 week pain management program (have to many other problems to even start there) but it was the best thing I have done for myself the phycologicial side of the programs is where is gained the most. I did not know there are 4 stages of FMS. I have all 4 of them. Trigger pain, depression, stomach & intestianal issues & Fibro Fog. The question on Lyica. I have been on it they were able to start it for FMS patients. For me its a Blessing. I also take Cymbalta. It is for pain & depression a very good med if you are able to take it. You should try finding a pain management doctor. They have so much more to offer FMS patients than a Rhemetologist or GP. Im actually on my second Pain Management dr. because of so many other conditions. I have more that 20 different things medical I deal with and where I live is to rural to have the specialist required to really help me. So I travel over 2 hours 1 way at least once a week to see multip specialist.

have faith; may the best of this year, be the worst of next year

I have included a poem given to me by a wonderful lady who is a warrior. she reads this every week as she gives tours for patients and family members of the Mayo Clinic in Rochester MN. she suffers from something far worst than I can imagine and this is her 'song' so to speak. it has changed the way i see myself and how i want others to see me I hope all will open it. its worth the read.

38

sorry hit wrong button here is the poem

WARRIOR DECLARATION

I am tired of settling

I am tired of living beaten down

I am tired of being told that this is how life is going to be

I am tired of being afraid

So I am taking my position as a daughter of the Most High

I know who I am; I know Whose I am

I know what I believe and Who I believe in

I know who I’m fighting against; and what I’m fighting for

Today I am making the decision to stop living like a survivor and start living like a warrior

I refuse to settle; I refuse to just get by;

I refuse to lay low; cower down; and live my life in the background

I am in this thing to win.

Mountains don’t scare me, valleys won’t stop me, people won’t hinder me

I will fight until I conquer!

I will not give up any ground I have fought for;

I will not be pushed over; under; or backward;

I will stand my ground until I make progress

I know times will get tough, but I will get tougher

I know I might fall down, but I will get back up

I know I might fail, but I will keep on trying

I have settled in my heart, I will not be a causality

I will not be missing in action

I will not be a prisoner of any war

I am determined I am not a quitter, I am not a failure,

I am not a coward, I am not a victim, I am not a survivor

I AM A WARRIOR!

39


That is a really awesome poem! Thank you for sharing. I'm preparing to go into the new week without the structure and security of a job. Feeling better on the medication and really want to get back to work. I've made my lists of all the organizations I'm going to contact on Monday (including my job's EAP hotline) from the suggestions everyone sent on this site. The support and messages I've received have really helped to soothe my anxiety. Hoping to continue to take one step at a time and not freak out too much.


Wonky Momma said:

sorry hit wrong button here is the poem

WARRIOR DECLARATION

I am tired of settling

I am tired of living beaten down

I am tired of being told that this is how life is going to be

I am tired of being afraid

So I am taking my position as a daughter of the Most High

I know who I am; I know Whose I am

I know what I believe and Who I believe in

I know who I’m fighting against; and what I’m fighting for

Today I am making the decision to stop living like a survivor and start living like a warrior

I refuse to settle; I refuse to just get by;

I refuse to lay low; cower down; and live my life in the background

I am in this thing to win.

Mountains don’t scare me, valleys won’t stop me, people won’t hinder me

I will fight until I conquer!

I will not give up any ground I have fought for;

I will not be pushed over; under; or backward;

I will stand my ground until I make progress

I know times will get tough, but I will get tougher

I know I might fall down, but I will get back up

I know I might fail, but I will keep on trying

I have settled in my heart, I will not be a causality

I will not be missing in action

I will not be a prisoner of any war

I am determined I am not a quitter, I am not a failure,

I am not a coward, I am not a victim, I am not a survivor

I AM A WARRIOR!

40

I found a group called CICOA in Indiana. They serve the disabled and elderly and when I spoke to them last week, they said they could set me up with help at home.
I have a huge list of medical problems that meant I had to stop working but when I only had Fibro, I just kept moving and took pain meds when needed. Work is a great distraction and I loathe staying home and only getting out for dr appointments. You don’t mention what your work was but I would try going for another job that may be physically easier.
You should start seeing a pain management dr to work on drugs that will help. It seems like most drugs that give relief are not long term :frowning: but surgery may be an option if you have localized pain in your spine etc.
Check to see if you were signed up for long or short term disability. It’s a lot of work but if you had insurance, they will pay out every week. It depends how bad you are but if I were you, I would keep working. The longer you work the more credits you will have for social security payments.