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I'm new and I'm venting!
6 Replies
iame1948 - December 16

Hi all:

I have never posted on any site before.

Around 1972 I was diagnosed with a herniated disk l5-s1. I had surgery in 1986 for it with a partial laminectomy. That relieved the severe pain and reduced my endurance. Also in the 70's, I had a "roller skate" honda and totaled it. In my teens I roller skated ~15 hours a week and fell many times.

I was diagnosed with degenerative disc disease l4-l5 and l5-s1 in the early 90s. I pushed myself and kept working, as well as finishing graduate school in clinical psychology. I became a therapist. My jobs had me driving all over the county.

In 2004, I realized that I could not be good at my work anymore, even though I loved what I was doing. Finally, after many years an MD agreed with me. Finally. I filed for social security disability, quite working, and 1 year of California disability. Amazingly, I was approved for SSDI in the first time thru and would start on it after my California disability ran out. Cool! (showing my age here) I was very surprised.

I sold my house and bought an RV. I was going to travel all over the place. At least, that is what I thought. However, wherever I went I grew "roots". I ended up in Southwest Arizona at an RV resort. I liked it and stayed. Made friends. Was able to drive and was mostly functional.

After about a year, things changed. A neighbor of mine had bought a book on fibromyalgia and I decided to glance through it. Oops, the symptom cluster sounded like me.

My local MD referred me to a rheumotologist (who believed in FMS) and my own diagnosis of myself was confirmed. That was around 3 years ago. I "fired" my second RA MD because all he was doing was making me go 100 miles monthly for pain prescription. He was the one who finally convinced me to use them after years of refusal (MDs wanted to prescribe it for my back pain).

I got angry, I got frustrated, and I got depressed. Over the last 3 years, I have gotten progressively worse. I now have a decent day around once every 3-4 months. I can walk about 10 steps before FMS pain stops me. I stopped driving because I couldn't predict when fibrofog would set it and I would no longer be able to focus. When that happens, my eyes wander so neither my brain nor my eyes focused. (diagnosed at 18 months as cross-eyed). Now I have to have someone drive me to all of my appointments and to go shopping. Over time, I use a cane with the other person on my other side keeping me upright. I lose my balance with no warning. I fall with no warning. Day after day. One day I counted 23 losses of balance in the day. Aargh! I could no longer even clean my RV.

I love to cook, now I cook only minimally using a bar stool to do so so I don't have to stand. I can't even stand for longer than a minute. My arms, well, if they are up over shoulder height I have about a minute before pain sets in. I have GERD, I have IBS, I have bladder problems, I have balance issues, I have remaining alert issues,

I am so fortunate (sarcasm) that I have probably about 90% of the cluster of symptoms. And now here, someone asks about itching. Well, I have that one too.

Everything I read or doctors said: fibromyalgia is not progressive. You don't die from it. My 2nd RA MD disagreed with that saying yes it can be progressive and yes you can die from it.

As of 1 April, I will be "homeless". I have no funds to pay the rent and I receive too much income from SSDI (in Arizona) to receive any help from the state. I have 2 dogs that I am not willing to giv up and now, I can't even drive my RV to anywhere. I feel fortunate when I am able to get up the steps without stopping. Last year I asked friends and family to "donate" to my rent. I knew I wouldn't be able to pay any of the money back. This year that isn't an option.

I am open to suggestions on what I can do as being homeless weighs on my mind. Living under a bridge: well, that would most likely kill me. And OH, I forgot, I have severe emphezema (yes I smoke) and am allergic to steroids, meaning that any treatment for respritory problems are SOL. Steroids are used the most.

So.... here I sit. Where I always sit. Scared to move because of pain. Even taking 30 mg daily of norco.

thanks for you eyes (ear) and giving me somewhere to vent.

shanti,
bobbie

 

Stacey373 - December 16

Hi Bobbie - Wow! I don't even know what to say. I'm very happy that you found this forum...Welcome to the group! I hope the people on here will be able to help you even just a little bit.

I wanted to tell you that I take well over 30mg of Norco a day. ALOT MORE than that! I'm wondering if you are still not wanting to take the pain meds? Obviously you are willing to take them, but could it be that you're only taking a minimal amount?

The reason I'm asking you this is because if you let a pain cycle go, you will only feel worse. I realize this is probably the least of your worries with all the problems you have...but maybe you could at least try to get your pain levels better under control and that would help you a little?

I don't know what else to say....I'm so sorry for your situation and I hope you can get this all figured out before you actually become homeless. Hopefully someone else on here will be able to help you more. Hang in there and Take Care of yourself, Stacey :o)

 

Noca - December 17

Welcome to the board! I am sorry to hear that FMS has taken so much from you! I really think you should consider using more pain medication to get your pain levels under control. What would you rather have?, being dependent on pain medication or "walk about 10 steps before FMS pain stops [you]"?

There are pain mecications out there, assuming you arent allergic to them, that can treat your pain. 30mg of Norco is really not that much. To give you a picture, it is only equivalent to "15.4 mcg/hr" of Fentanyl patches when I am on 75mcg/h of Fentanyl, + Dilaudid & Lyrica on top of that. I am able to actually get my pain under control about 4 or so days out of the week now.

You should see a pain management clinic doctor if you don't already, on top of your Rhemuy. Hope you are able to find relief.

Keep your head up! :)

 

kimzsoa - December 17

Wow..and I thought I had it rough. BTW...I think I am the one who mentioned itching, one of them if not the one. I married an adulterous husband, then an abusive one, now have PTSD, am a recovering alcoholic past 27+ yrs. Spent 21rst B-day in rehab. Have fought with eating disorders from age 15 through most of my life....

Finally married a wonderful man who treats me like gold then I get this. I guess looking back I have had symptoms for a long time but not severe as they have been the past few months.

I guess all I can say for me is to remain grateful...always find the positive in life no matter how glum things seem and "Expect A Miracle:. That is the bumper sticker on my little Honda CRV.

Venting is good, for me, keeping things bottled up led to more problems with my health. My dream has been to run a marathon...picked one in SLC UT in April. Proceeds will go to Huntsman Cancer Institute. I have a friend who had a mastectomy in Oct. One diagnosed with cancer 2 days ago, another who has known, but just told her friends yesterday...so yes, pain and all I will be jogging, maybe crawling but am determined to do this. Began walking when I quit smoking in 1987, and jogging past 8 yrs. It sucks to be in pain but I do it anyway.

Won't take addictive pain pills, can't take SSRI's or Gabupentin so all I am on is meloxicam which is not ideal for fibro but helps with joint stiffness and some pain when mixed with Tylenol...but, can cause stomach issues which I already have and sudden death with no warning, lol...sometimes life just sucks but you have to learn to squeeze. lemons that is, and I have enough lemonade to cover the country.

Life is as good as I make it, as good old Abe Lincoln said..."You are as happy as you make up your mind to be." It is a choice...so, develope an attitude of gratitude and eventually you will find peace.

Best wishes and God bless!!

 

kimzsoa - December 17

BTW...I am talking half marathon, no way the full 26 miles and expect to be in bed a day or so after. I good friend, very healthy just did a full and it put her down for a few days so I will be lucky to live, lol...jk. Have jogged 10 once and 123 once so 13.2 should be easy unless this problem gets worse as it gets better and worse whenever it decides to. I used to jog an hr non stop every day just va yr ago...10 min. miles...now more like 13 minute ones, grrr...but, it is actually what caused the swelling in my ankles from the Gabupentin to go away after elevating my feet 3 hrs the day prior to no avail.

Just smile and fake it til you make it...could always be much worse...our biggest fears normally never happen anyway so stay positive :-)

 

iame1948 - December 18

I thank you so much for reading my vent and understanding what I am talking about.

I did fail to mention a 21 pound weight loss, which puts me at 85 pounds and that I am on 3000mg gabaptine a day for neuopathic pain. Also on 7.5 2x day of meolicam and zoloff 200 mg a day.

I do have one "yes but" to the suggestion of more pain meds: I am on medicare with part D rx plan and can't afford anything not generic.

My wants: I don't want to run a marathon. I want my brain back!! and the ability to drive again. Those things would be amazing and wonderful.

I am so sorry, however, I stopped believing in miracles though re my living situation I could use one right about now.

Thanks for you support and I will keep reading responses. I am willing to do the pain management MD if the doctor belives in FMS!

shanti,
bobbie

 

Fantod - December 18

Bobbie - Welcome to the board. I am really very sorry to read about your situation.

I agree with Noca that you need a fresh set of eyes on your situation. A pain management specialist would be an excellent place to start. Also, have you ever seen an neurologist about your balance problems? You can call your local hospital and ask for the physician referral service. See if they can match you up with a pain specialist and/or a neurologist who has an interest in FMS. You need a complete overhaul on your medications and treatment plan in general.

I have degenerative disc disease too. I think your inability to walk may be originating from your back rather than the FMS. I have a great deal of leg pain from my back problems. And I also have hip pain which is from chronic bursitis. Either of these problems will keep me from going too far on my feet. I sit when I do things in the kitchen too.

That being said, the longer you sit the more deconditioned you become. That is certainly going to contribute to your inability to stand, walk and maintain your balance. Physical therapy to regain some strength would also be helpful. I own my own home with a large piece of property. I do have help but I also do as much as I can to stay active. I do use a wheelchair as a walker and also as my chariot when needed. I have some balance problems too. But my wheelchair is primarily used to save energy for special outings that require a lot of walking. I'd rather sit and enjoy myself than be overtired and miserable.

Most of the pharmaceutical companies offer assistance with prescriptions. You'll find information and vouchers on their web sites. Ask for samples whenever you see a doctor.

You could try Curamin to see if that helps with your pain levels. Yes, it is a spice but for this application it is highly purified and comes in capsules. Phosphatidylserine is a supplement that helps with memory issues. I buy mine online from Puritan's Pride - good sales. They call it "Neuro-PS." Both of these items were recommended to me by my nutritionist.

Do you use oxygen? Some of the cognitive problems you are experiencing may be directly related to your COPD. That would also explain your weight loss. Is no one (ie: your medical gurus) paying attention to this???!!

FMS is variable from one person to the next. It is progressive for some people and not for others. You will not die from FMS itself but rather from some of the "perks" than may accompany it. Complications from one of the many associated conditions may prove fatal. Personally, I think that your doctor should have put a sock in it. There is no reason to add fuel to the fire by saying things like that to a patient who is already really struggling.

I've been giving some thought to your housing issues. Have you contacted your local United Way Agency, the Salvation Army or Catholic Social Services (you don't have to be Catholic) to see what assistance that they may be able to offer? How about local churches? You need an advocate to help you stay in your home with your two dogs. The sooner you start making phone calls the better. All of these agencies are overloaded right now. It will take some time for your request to work its way through the system.

Bobbi - You are going to have to be your own best advocate when dealing with all of these problems. I think that you are still angry and very depressed (who wouldn't be). Somehow, you need to put that aside and start working on making some positive changes. Anything is possible but you have to be the one to make it happen and believe it. I'm glad you found us so that your sense of isolation is not so acute. You are not alone - more heads are better than one. God Bless and take care.

 

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