Siskiya. I a doing a little better. THank you. You are so right about getting out a little every day. I did a stint in Stanford pain management unit and one of the first things they did was to get me out in patio every day. Before going to Stanford I had just got back from a trip to Disneyland. Did whole Park in a wheechair. When I got out 2 weeks later we celebrated by going back to Disneyland and I walked it!!!!! Of course a change in meds helped. I had been going to a very conservative doctor here in Sonora who didn't really believe in Fibro, even tho he was the done who had diagnosed me. (Took him 2 years to get there...but this was back in 89-91 and docs didn't know much) First thing they did at Stanford was double my antidepressants and pain meds. Also established a routine; ie up at 7a.m. shower, dress ...15 doctors in for consult....then meetings the rest of the day. We all sat around in our wonderful warmed up blankets and were miserable for the first few days. We had to stay up all day! But, good food..no coffee, gentle exercise, coping methods and discussions...we all started coming out of the flare... I kind of believe I would do much better in a more regulated atmosphere. There was no real life stress in there tho.....so after a few weeks back out......here we go again. I was able to continue working for awhile, but I was absolutely miserable with pain and fatigue. I am doing much better now. Finally stopped looked for a magic cure and accepted I have this.....now do the best I can to deal with it.
Wow A purple sparkly cheer up card . Thank you so much !!!!!
OMM Thank you. I do the same thing!! Take a shower. Take meds...back to bed to wait for them to work. Walk the dog. rest get on Facebook rest run an errand rest. This seems to work best for me even on good days. I read an article on Arthritis once and it suggested do a little something for 20 min rest 10 and alternate througout the day. This really works for me. Sometimes I "do" for 2 hrs, rest 1//2 hr. or do for 10 min, rest for 30.....whatever works. But I can get an amazing amount done this way. My 30 yr old daughter has seen me do this and says Gosh Mom you get more done during day than I do! :) On really bad days I read a little, watch TV a little, Facebook a little etc, unless vertigo is real bad, then I can only sleep or rest in dark room.
Stanford is great about helping people to get a positive routine going. That is one thing I have heard very positive about it. Otherwise it has been mixed reviews about it but i personally think it is one of better places in Northern Ca to get a really good diagnoses and start on meds. USF also is great if they find out you have any autoimmune disease as it is their speciality and just up road a bit!
Sonora! It is really pretty in foothills of Calif, gold rush country with plenty of old buildings done up nicely for those not familiar with Calif. It was one of the towns we looked at and at least you are decent size and most likely have some Rheum there by now. I ride horse and backpack out of Hoover Wilderness. That is just north of Yosemite and very beautiful.
I live up near Mt Shasta and just is so small we hardly have any doctors that move up here that would not rather out be fishing, hiking or skiing. Other Words not working. It is extremely hard to find just a doctor that truly cares. I did have decent GP but he got ALS,lou gehrig disease, had to retire early. So now I am again searching for a GP up here. One doctor who sounds decent is not taking new patients and I really hate to travel over hour just for GP visit.
Sorry...Yes back in that time when you first went in I do not think many doctors had heard about Fibro either. How did you like the meetings at Stanford? I thought about going in there for similar only to get all my different diseases treated by one main team all working together plus I grew up in Napa and so have family.
I also was wondering if they have plan for getting off pain meds. I had the horrible experience of my new GP not prescribing my pain medication and literally was stuck for week until pain doctor could get me in...so started going through withdrawal. Luckily i had some extra meds to help but it was bad enough that I am thinking of trying anything but narcotic pain meds to get me through the pain. But pain PA thinks I have too much going on. What am I going to do if snows and road closes and need my pain RX again?
So why i am looking into getting off them slowly. Hey if you ever get in trouble here in CA i found out who to call about problems with doctors etc. It is DMHC or dept of manage health state of calif....if you say you have called them well my sister was right they jump. So keep that name.
I really glad you are improving and moving!! excellent that you returned to Disneyland walking! you should be extremely proud of yourself that took a lot of work and courage on your side! Please keep in touch!
Really...only you did it all that effort to enable yourself to walk the park on your own and i sure hope you realize that!! give yourself a ton of credit for not just giving in to the pain and let it win...i know you still hurt so it took a lot of courage!! Hope you keep it up and keep in touch!!
Thanks for reply! I know what you mean about pain meds. I have been in between pharmacies and ran out of Effexor. Not pretty! Was visiting son and wife in Blythe CA...They do not have a WalMart which is where I usually get my Rxs. They had a little podunk mom and pop drug store and they didn't carry my dosage. Took me several days to get it. Severe withdrawals in meantime. Riding back home with my daughter (Looooonnnnggg) drive, I lost it. I absolutely never cuss (well at least not This word :) but I was sitting in the back seat with the kids --daughter and daughter in law in front seat. The heater was blasting at me and like many Fibros I can't take it straight on me so I asked turn it down--got a little lip so I said it more forcefully and my daughter told me to "chill, Mom". I believe I said something like, you know Chelsea sometimes I just want to say F......... You. Except I spelled it, cause I couldn't really say it! It really hurt her feelings and was embarrassing at the time, but we laugh about it now. So.....yes it does scare me that I might not be able to get my meds!
Stanford was good but could have been better. More aftercare would have been good. The results were amazing, but honestly I think it was getting away from stress that did it. LOL
I used to go horse camping up in Emigrant Wilderness which is just west of YOsemite. God's country. Took my little Arab up to 9700 feet at Eagle Meadows. Heck of a climb-- he was 25 ish at the time and just marched right up that mountain. My friend was riding a big paint--7 yrs old, and he had to stop and just breathe every once in awhile. God I miss that horse. He was 30 when he died and I haven't gone horse camping since. Horses are the BEST for Fibromyalgia!!!
Maybe this site, M.A.G.N.U.M., which is dedicated to migraines, will have some information. I would search online for credible sites for information on migraines. Bringing this data to the doctor may help. The site I am including has a list of symptoms for migraines.
http://www.helpforheadaches.com/articles/Anatomy-of-Migraine.htm
WebMD is considered more credible than Wikipedia, but less than hospital or doctor sites. Still, there is a good writeup on migraines without pain. It also tells how to keep a diary - great info to bring back to the doctor!
http://www.webmd.com/migraines-headaches/what-are-silent-migraines
I hope this helps. I'm a fellow migraineur, and I know that many think it's "just a headache" or that it is so debilitating one can't get out of bed. However, there are many types of migraines, so your doctor may be used to only treating the classic migraines.
I have found that online research has helped me to communicate more clearly the variety of symptoms that I am experiencing. It would also help to get your eye doctor to write up the symptoms that have led to the conclusion that you are having silent migraines. Is he an optometrist or opthamologist? If he's an optometrist, perhaps he can refer you to an opthamologist. I don't know what level of eye doctor you have seen, but anything written will help you convey information.
I hope this helps!
Hugs,
Scribelle
What are pharmaceutical grade vitamins and where do you get them?
I am so sorry that you are alone and having to go through this! It is much harder than those that do have family or friends even a job ...mainly contact with other people.
I might suggest journaling or if you can speaking to a counselor so you can have some support plus get all frustration out.
Please do try and get out of bed daily....it is the key even if you just do one thing...but try and get up and move around a bit. It is good for you emotionally as well as physically.
I play game of either reading a chapter in a book than doing small chore or letting my dogs out as i live in country and no fences so i must go out with them OR watch TV and do same on commercials. Gets you up moving but resting mainly.
Again i am so sorry.
Thinking of you!
The non-prescription sunglasses sound wonderful. I have tried many shades and intensities but none seem to work for me indoors. I am therefor interested in the brand name if it wouldn't be too much trouble. Thank you!
Yes.. this works for me too. I live in a townhouse and the stairs are a challenge on bad days. They seem to take what energy I have. I know not to isolate..I get very depressed and have been hospitalized (usually when I go off my meds, even titrating down very slowly). If I am isolating...this is a red flag for me. I do get on Facebook daily even when very tired and interact with the community there and play FB games with friends and family. My daughter and I talk on the phone daily. I live in a safe good townhouse community..so when I can I walk, even if it is one lap around the complex. I am doing so very much better this week. We have a community pool not 50 yards from me so I plan to go in and if I cant do my water aerobics, I will water walk up and back to strengthen my legs. I am usually pretty good about exercising in the pool in the summer. It isn't heated, but I have a wetsuit. I play the same game you do ( I learned it from an Arthritis brochure) . Work 15 min, rest 30 (I change the ratio depending on how strong I am). If I had a one story, I would do the commercial thing too. When I was young and working, I would get my home chores done this way in the evening. It is amazing how much you can get done during the commercials :) Thank you for listening and thank you for your suggestions!. Had a bad month last month, but seem to be pushing my way out of it, slowly but surely!
thank you Robyn67....Doing so very much better!
Hi Pamela!
No trouble at all, sweet friend!
I went to my optometrist for the eyeglasses. I use the type that fit over regular glasses. They are cheaper than choosing a regular frame, and are great at blocking side glare as well. You can order light gray or dark grey. Also, they fit whether or not I have glasses on.
Because I am prone to migraines and have a cataract right in the middle of my vision (right eye), I went for the dark grey. They are great outside, but I may also get some light grey ones for indoors - especially when watching TV.
The ones I got from the optometrist are much better than the ones I originally bought at a drugstore, by the way. The lens has less distortion.
I hope this helps!
Hugs,
Scribelle
Siskiya, I totally agree! I have trouble getting going, so I schedule nothing for the mornings except meds, taking my dogs outside to do their business, and feeding my animals. After that I read or play games on my phone. For me, TV is too noisy for mornings, but that's just me. I seem to need quiet. If I don't get out of bed, I miss meds, acquire an invalid attitude, and my attitude spirals downward.
You are so right! Step one: get out of bed.
Hugs,
Scribelle