My legs are killing me

[MartySews2]

Kathy, the key to filing for SSA disability is to document all of the things that you can no longer do with specific examples. Do not focus on what you can do, make sure the focus is on what you cannot do anymore. Include info on memory loss as well. The more you document, the better off you will have a chance of being approved especially if your doctors will corroborate what you have said. Though remember, all first time claims are almost automatically denied. It took me with my heart disease 2-1/2 yrs to get approved for my disability. Basically, your condition has to be so severe that you cannot hold a full-time job in any field or you are on the verge of death. That is only way that Social Security will approve a claim. If you need some help, call me & I'll help you with the wording for your documentation. Good luck!!!
Marty

[sewingmom]

Kathy, I do not want to put a damper on your hopes for being added to your husbands Ins. but you have a pre-existing condition and they probably will nto cover your back problem. I am so sorry you are in such a quandry. Do doctors still use provatly contracted transcriptionists. I know a couple of ladies that do that from home and only come to tow a couple of time a week to pick up paper work and their paycheck.

[kjh9835]

Well if it's pre-existing and they won't cover it, I'll just have to figure out how to get the meds covered. I will not have another nerve block b/c the first one (bilateral sciatica) helped six weeks, the second one (left leg) not at all and the third one (right sciatica) not at all. I'm not doing it again. If I can't get the meds covered, I'll contact the pharmaceutical company for help in paying for them.

Most of the transcriptionists here work thru the hospitals as they are contracted with the dr offices (one hosp. manages one set of drs, the other hosp manages the other set). There are very few "single office, old timey" dr's left that have not "joined forces" with a hospital and the one that is local, I could NOT work for anyway (personality).

I filed my claim this morning, only took me 3 hours not counting the hours/calls I've made to gather the info. What a mess!!!

Kathy

[Mule]

Most group insurance policies will cover a preexisting condition as long as there was prior coverage on a "creditable" policy (which yours would almost certainly be) with no lapse of 63 days or longer.

[Sancin]

Kathy, I am retired but I also have the same back problem as you describe plus degenerative arthritis in many many other joints. I seem to recall responding to you earlier in the discussion.

I don't have the mind stuff you have but I am on Cymbalta and frequently have to top up tylenol with opiates. I am Canadian and our health care system is quite different. For a few years before I retired (8 years ago) as an RN in a school of Nursing, I was not able to supervise students clinically, but had a physicians letter to have work adaptions made. Application for disability was turned down. The work adaption ended up doubling up on classroom teaching, but was nearly as hard as standing is a killer as well. As I was close to retirement with pretty good benefits I retired. I wish I could say that leaving work solved my problems but after a few injuries and surgeries (not all orthopedic), I am finding that each incident has slowly slowed me down more.

Regarding your antidepressant med (used for chronic pain), and your mind working, I wonder how long you took them before deciding to quit. They do take awhile to become effective and side effects do wear off. You should discuss this with the professionals at the pain clinic. Something else, as well as the swim exercising, that may worth learning to meditate. There are lots of ways of meditating and as more and more practice it there are more teachers available. If
you can't find one near you you may want to find and read books by Jon Kabatat-Zinn, who is currently publishing on Mindful Meditation. Meditation will not cure all your ills but will quiet your mind and act as an adjunct to medications. BUT, you must practice using it and work it into your daily routines. I suspect your pain clinic has information on it and maybe even classes to attend - don't give up.

I find with my back I suffer slot from spasms which cripple me right up. I go to a therapeutic massage therapist occasionally ( it is expensive and my benefits cover very little). I find 3-4 treatments help for quite awhile. I also go to an acupuncturist for about 3 visits before I travel. You have no doubt found out that sitting can be as bad as standing or walking!!!

It is important to keep moving One physio, years ago told me to 'walk through the pain' - it did work for a few years, but now my feet won't allow that. I am using a cane and/ or a walking stick (which keeps my back straighter and upright).

Regarding govt help. As I make more with my retirement income, I have not reapplied for disability. BUT, having just heard about it I am in the process of being declared disabled with the tax dept - I am hoping it will help pay for some of the extras I don't qualify for elsewhere.

Wishing you success in finding some relief somewhere.

Nancy

PS. I find shopping a killer, I refuse so far to use the wheelchairs in big box stores, but have no trouble asking a clerk or service person to find me a chair to sit on. They are usually glad to do something they know what to do!

PACEING is all important, and yet so difficult to those of us who have worked so many years walking and doing so much in a day

[Sancin]

After writing the previous I thought a while to add that sometimes about adding another serotonin protection med (as Lyrica, Cymbalta, and antidepressant medications are), is often ordered or recommended. Then I went back and read this thread from the beginning. You mention that you are bi polar - are you taking separate medications for that? If so you should get a pharmacist to review all your medications to see if there are any interactions. It may be that your psychiatrist and/ or primary care physician have to change medications or adjust dosage

Re rheumatologist -I hear you re bedside manner. Rheumatologists can't do anything about degenerative arthritis so don't like us - makes them feel inadequate. Advent of pain clinics are God sent. My mother, whom I inherited all this from and she her father before her used to say "doctors are useless, they either push pills or want to cut". With all my years in the business I believe she is right.

Again, good luck and hang in there.

Nancy

PS We had a wonderful potter here in town, who unfortunately found his true love in Australia. He made wonderful whimsical 'things'. One of his best was a clay hand hanging on by fingertips, to a ring hanging on a leather tether - hang in there!!! When I was going through a divorce I used to move it from room to room and hung one in my work office
I bought so many of them over the years for friends. When he stopped ma

[kjh9835]

Thank you very much Nancy, haven't seen you in awhile. I took the Lyrica for a couple weeks before I felt "high" from it. I was at work, left early, passed out in my car, woke up by staff on break and waited til my head was clear before I drove home. Honestly I did experiment with marijura when I was a teenager and just let me tell you now that if I was still a teenager wanting to get high, this med will do it very well. I called the dr. and he said quit taking it and go see another dr.

I currently do not take any mood stabilizers. I used to take Abilify but ins. stopped covering it and it was over $700 so I called the dr and he stopped it but did not start anything else. Then we moved. I went to him a couple times, was doing well on just anti-depressant so I finally asked my primary dr if he would prescribe it so I didn't have to drive 3 hours every 2 months to see the psychiatrist. He said he would but if I needed to change it I would have to go see that dr. I've been on Wellbutrin for quite some time.

The pain clinic dr ordered the Cymbalta, I can't remember when but it was mid-April I think. I took it til first week of June but actually became manic sometime the end of May, lasted a couple weeks and the family noticed it and called it to my attention. I told the pain dr June 4th when I went for nerve block and he gave me a smaller dose and is weaning me off it.
Maybe if I had a mood stabilizer I could handle the Cymbalta but I don't know and I don't know how to find out other than to go back to my psychiatrist in my hometown. I definetly felt better while taking it and didn't need the prn pain meds nearly as often. My mother also has fibromyalgia and deg. disc disease along with arthritis and she has been quite well/more active since she started taking it. I have a couple other females on her side of the family that also take it, that's why I asked the dr for it in the first place.

Yes I know I have to pace my activities and I also have figured out that if I know I'm going to be extremely busy one day that I better plan to rest all of the following day. The pain clinic dr has also told me to "work thru the pain" and keep active, bedrest is a big no-no but I couldn't do that anyway as I have to be busy all the time even if it is just small mediocre things to do. My biggest issue now is the memory loss/concentration issues. I swear I am going crazy.

Went to pain clinic yesterday about the memory loss as one of the nurses mentioned at my nerve block appt that it might be the Neurontin. Saw nurse practioner who said maybe it is, maybe it isn't but since you didn't tolerate the other two meds, there's nothing else to try so I guess I'm either going to have memory loss or increased pain and that's life!

I am considering seeing another neurosurgeon for a 2nd opinion. Not that I want to have back surgery but if the first one had said I needed it I would have gotten a 2nd opinion for that suggestion so why not get a 2nd opinion on the fact that surgery won't help? I'm thinking maybe going to a larger town with more drs/more sophisticated equipment or maybe even Mayo Clinic for their opinion. I've read online about where they can actually remove the affected discs and put in artificial ones. Maybe that's an option that's not available around here? I already had a laminectomy on my neck in 2003 (C4-5, 5-6) and those are fused together with a metal plate.

Kathy

[Sancin]

Kathy and all others who are having back problems, I highly recommend visiting the following site. It is loaded with information both from physicians, other health care workers and has blogs and discussion forums for those who suffer the many problems highlighted on the site. It is informative and not selling any service or products (unless bracketed as advertizing that pays for the site). I have learned a great deal there and refer back to it frequently as well as referring others to it.

http://www.spine-health.com/

Unfortunately, Kathy, you are going to find similar information that your physicians have given you - surgery is not likely to help you and may in fact make situation worse. Hard news to swallow. In fact I had 2x conversations today with 2 friends who have been told the same thing.

FYI - I also have fibromyalgia and have had it for many years, even before that was it's name. It waxes and wanes, but when I am having really crumby days I think it is the fibromyalgia and not the arthritis. They have different types of pain. The fibro has fibro fog as one of it's symptoms and it feels like what you describe as being on a 'trip' with the Lyrica and the Cymbalta. It is also interesting that one of the treatments that is being used in Canada for fibro and chronic pain generally is marijurah (yikes - spelling). Some physicians are prescribing it for their patients after getting government approval (required for many meds that are not usually government funded). Those who take it say it is great. Some cancer patients also use it. Personally I don't and won't consider d/t fact I tend to hallucinate when I get a high fever and with some meds so don't want to even try it... tho it is tempting some times. Canada / BC is in the middle of a controversy about legalizing Mara.

A tip that I have found is that if I am going to do something that will cause increased pain, I take Tylenol with Codeine before I start out, even if I don't have pain at the moment. I find that I can then get done what needs to be done, but if I don't watch the time I am busy, I pay for it the next day.

You do have a complicated life and health problems. As you are dealing with different clinics and physicians in different locations, is there anywhere you can get someone who will coordinate it all. Here, Nurse Practitioners are more and more frequently taking on that role. Ask at the pain clinic if they can refer you to a closer psychiatrist,/ mental health clinic or perhaps they themselves are knowledgeable about your bouts, if they know about them - likely don't.

I wish you well and some peace.

Nancy

BTW - I have not been here for quite awhile. I decided I needed to spend my time on things other than my computer. Well I never did get that much done and yesterday I spent 7 hours just getting up to date with discussions here and Stitchers Guild. I didn't even visit any blogs. How on earth do you all get all the sewing done that you do!!!? Laura particularly seems to be so productive and I know she works and has some health issues of her own, let alone a big family and she posts frequently.

[kjh9835]

Thanks again for your post and link. I think I've been on that site awhile back but not recently. I'll read up later today.

I find that I can then get done what needs to be done, but if I don't watch the time I am busy, I pay for it the next day.

I know exactly what you mean. Mornings are more "actively" productive for me once the am stiffness and slowness goes away. Then I can get done what I need to/want to until early afternoon. After that, I'm pretty much done for the day. I can fold laundry, sew a little, etc but don't expect me to clean the bathroom or mow the yard, etc. and if I do, the next day is shott! I can pretty much gauge how my day will go within a couple hours of getting out of bed. Some days are good, some days not.

I think some of the problem is that the pain clinic is focusing on just the nerve inflammation, mostly the right sciatic nerve which has been injected a couple times. The aching does start in my lower back and radiates to the buttock but once it get to the buttock, its down the right leg to the knee. So IMO, the achiness is probably the arthritis/protruding discs and the buttock/right leg is nerve inflammation. I'm scheduled to go back in August to see the N.P. for a re-eval and scheduled in Sept for bilat. sacro-iliac joing injections to see if that helps the lower back.

Sometimes I feel like the clinic will keep me coming back and coming back again and again, doing different procedures in different locations depending on the location/severity of my pain. I do not want to spend the rest of my life going to the freakin' dr. every 2 months to be a guinea pig!!! BUT around here, if you have pain anywhere that is not relieved with one trip to your primary dr, you are referred to the pain clinic. There are some primary drs. that won't prescribe ANY pain relievers even on the first visit. You may get an anti-inflammatory or maybe a muscle relaxer if you are lucky but then off the to pain clinic you go. (I also sometimes think they are in cahoots with each other).

And oh yeah, I've briefly thought about the marijuana for pain relief but I would not ever do anything illegal esp since that would definetly put my nursing license on the line. I worked too darn hard for it, not that it's doing me any good right now.

The clinic did suggest I see a therapist as did the DON at the LTC facility where I worked. I do not like the one here in town so I am going to reseach who is covered by dh insurance the 1st of July and start going. I know I need someone to talk to as Joe is not very supportive right now and is working alot. The dogs just look at me funny when I talk to them but at least they are warm and love me back unconditionally.

Kathy