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Catch up... nice to see you all...
dakotaspirit1957 posted:
As I said in the daily check in... I am finally walking again... If you call this a walk... I am slower than a snail... And usually very funny to watch... But today I have made it thru the house 4 times this morning already and only drug my leg one and a half times... And it wasn't quite a half... If it wasn't for that toy I slipped on I might have made it... And it wasn't a bad slip... Wasn't a big toy...LOL...

The pain is unreal... Doesn't only have me in tears but has me screaming out at times... Not that I do it on purpose... I can't help myself... But the tears are more tears of joy now for they all but gave up on me walking again... Still have no real understanding of what happened... That is the main reason they didn't think I would walk again...

But I laughed and said I was still walking... Just part of me dragged... and part of me did all the work... But If I had to get 3 feet or 6 feet... I managed to get there... and I usually managed to get back on my own too...

But now I am getting thru the whole house and back to my room most of the time... I do take a break before I return tho... Exercises are getting easier but my leg isn't moving any higher and I worry about it...

The swelling has gone down again... Soon as I got back off that garbapentin... That stuff is rough on me but I promised to give it one more try... I didn't figure we would see anything different... When I went back on my water pill and they doubled it causing me to dehydrate but the swelling just kept getting worse... I knew what it was... I had to flatly refuse to take it...

My pain management Dr wasn't happy and wanted to take my oxycodone cold turkey... But she had second thoughts... But she wants me on Parkinson's meds and they are really hard on your stomach and my gastero dr disagrees I need it yet... I don't think I am all that spastic yet... and they are dangerous meds for me with my other illnesses...

I may be looking for a new dr there... I don't think going off Oxy cold turkey is cool... And she claims I won't have pain if my Parkinson's is treated... Yes... It causes Pain but so does my FM, MS ad severe spine problems... And Neuropathy and muscle ad nerve damage I have from my back... She has acted like FM is nothing and the other things altho very well documented... are a figment of my imagination... She always was a tough one to win over I liked it when I dealt with the lower gal and she signed the prescriptions... But times change... I am ot o my tramadol anymore... It is not proven to help FM... Even tho it helped mine... She said her office said I was o too much meds so I was pulled off it for it couldn't have helped me the way I said it did... I had to be lieing... Yes her words... I gave her a few choice words too... I told her if I was just i it to be a pill popper I wouldn't have told her that all the muscle relaxers didn't work... I would have kept taking them for the heck of it... I have tried and turned down 4 of them...

The only thing that helps my spasms and muscle cramps is valium... given to me in the hospital... And she refuses to give it to me... But the dr in the hospital discussed it with her and I didn't take it unless needed there.... She was adamant that it couldn't help me...

To change Dr's now and prepare for a move in November to NM... I feel is futile... For I am making a life change and moving to NM to be with my daughter ad her family hopefully sometime in November... Getting along with Dr'sand praying I can hang in there till then is I think my best route... I wish I was moving now... But I have things to deal with here first...

Wow... I talk too much... Take care and thanks for listening...
love you... Jan/Dakota
missist responded:
Hi Jan-- that is a lot of stuff you have. Funny about the doctor. Don't they drive you nuts sometimes?

My husband thinks that all stop learning when they leave school. He says I'd be better of diagnosing myself and finding my own cures.

Maybe so.. the drug part though Probably does require some lab tests and a white coat.

I hope when you get to NM you find a doctor that understands better.

Best to you!! Mary
Anon_10089 responded:
Hello and sorry for what you deal with. It's so funny (not in a good way) how doctors get stuck on trying meds. For me, I have the fewest side effects and do the best using Norco. I tried the gabapentin and gained a bunch of weight and didn't feel much better. It seems like some of these other non-narcotic meds are much tougher on our bodies and can cause so many other problems. But the medical and political world would rather us take those than narcotics. And I know the issues there, too, but if our conditions indicate controlled use, then we should be able to. I am glad she didn't make you go cold turkey. That is horrible and could be dangerous!

I wanted to mention that you might want to see a copy of your medical records from this doctor before your new doctor in NM requests them. Just in case she has notes about the meds that are not accurate. I hope you find someone who understand FM better. This doctor obviously doesn't!
missist replied to Anon_10089's response:
so true. my printout showed my diagnosis is stress. Who has joint pain and weakness and difficulty walking from stress??
BetteK responded:
Oh my, Jan! It's great you are walking again, but horrible that you have to experience so much pain to do so.

One possible tip for you: Do you have some Ambien for sleep? When I went off oxycontin, I was fine until the very last when the only way to decrease the dosage was to eliminate it. My arms and legs flailed especially at night when I tried to sleep. Finally, I took an Ambien hoping it would override the restless limbs. It did! I actually slept. Just to be on the safe side, I took the Ambien the second night too. The third night, I was able to read myself to sleep with no medical help.

Anyone who goes on these powerful drugs cannot imagine that she will ever be pain free enough not to need them. We just cannot believe that withdrawal will be a problem in out lifetime. But it may be.

Again, it is just wonderful that you are finally able to walk and your "STRESS (*!#@!!!)" is under control to this extent.

All the best,

Bette K
dakotaspirit1957 responded:
Thank's for your responses... I love hearig from you... It really helps me stay positive and it helps me deal with all this pain to come here and be understood and cared about... To know someone cares enough to open my message and leave just a hello... And/or leave a message of understanding and help...

Thank you for being here for me...

Take care... Luv... Jan/Dakota
ajnsmom replied to dakotaspirit1957's response:
Hi Jan, What town in NM are you moving to? I used to live in Alamogordo when my ex-husband was stationed at Holloman AFB. I hope the climate there will help you feel better too. Very little humidity in the area we were in. Now I live in Jacksonville, FL. I pray you will get better very soon!

Linda S.
dakotaspirit1957 replied to ajnsmom's response:
Yes... It is Alamogordo that I am moving to... And I felt like a different woman in days... The change in heat had a lot to do with it... Even when it was hot it didn't seem to effect me as bad... And the humidity and threat of rain and little we had just felt great for it actually cooled things off unlike here it gets hotter... I think I am just burned out of all the 106-112* here and a cool rain being an absolute miracle... if at all...

And like my daughter says it is time to share the wealth... lol... Don't know how wealthy she is getting on my ssi income and added appointments... lol... But I think she also meant share the love and we have plenty of that...

Been in Jacksonville, FL... Beautiful place... But was hot when I was there... Was trucking with my husband... Worked up a sweat in the shade in the evening coming from the shower... Don't remember how how hot it was... But was a long 3 days we were there for...

Take care... Love... Jan/Dakota

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