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I hope someone can give me an answer of any kind!
20 Replies
conniehurts - October 27

I have fibro and reynauds. For the last 6 months I have had problems with my right hand being "dead". For 18 weeks I had no ability to move anything from the wrist down. I now have use of my hand tho it swells slightly and is weak. I wear a fingerless compression glove like you wear when doing needle work and it helps but now something new is happening. From just above my elbow I have pain, mostly following my veins and slight swelling. The brace being tight on my wrist might contribute but I do take it off every few hours to make sure the blood flow isn't getting cut off. Also since regaining the use of my hand my ring and pinky fingers look and feel like I am getting arthritis. I cannot straighten them all the way without using my other hand and really working at them to get them straight. I do this at least every hour or so. I don't know what kind of dr to see since every dr has his own square inch and this could involve anything from my hand to my neck! I did have some nerve testing done and tho he eluded to the fact that it wasn't "normal" I don't know the results. There are also 3 spots on my tendons in my hand that are hard round bumps that I can feel but not see. Does anyone have this type of problem or any ideas of what dr to see or what can be done? Please answer soon, I know this forum is pretty slow being we are all in pain of some sort but I need some ideas asap! Gentle hugs and peace to all. Connie


conniehurts - October 27

I forgot that I should have told you that I also have spinal stenosis, degenerative disk disease and bulging disk all the way from my skull to my tail bone. Gentle hugs and Peace to all. Connie


axxie - November 1

Connie my dear, you are in some sort of crisis. Please see your gp and then ask the good doctor to send you to see a neurologist and a specialist in arthritis. Your gp should be getting MRI's and specialized x-rays. I hope you get some relief soon. Hugs and peace to you


conniehurts - November 2

Thannk you Axxie. Sadly even halfway decent medical care isn't to be found in Fairbanks Alaska. My dr just says she doesn't know what is happening and wohtn order tests. The neuros which I have been to previously are so stupid that they don't believe that you can get headaches from neck and back injuries which should give you a clue as to their abilities and there isn't a dr that specializes in arthritis in town. Anchorage is a days drive and don't have much better that I can find. We are hoping to move to the lower 48 in July where I hope to find better medical care. Right now my hubbys health must take precedence right now so that we have an income and I have someone to care for me. I was hoping that someone has had similar symptoms as mine but unlikely since I always come up with something weird. Specialized tests are something you have to go out of state for. This hospital here doesn't even know how to care for burns! They but ointment on them and don't carry sulfadine cream! With some emotional support from others who suffer pain issues I will survive until I can get decent care. I just hope with the new "health system I can get any care including meds and not be offered a little pill to take care of all that ails me. Gentle hugs and Peace Connie


axxie - November 3

Connie, I feel for you, my poor dear, now lets see, do you know if Raynaud's came first or was it secondary to other injuries or other illness, such as lupus, Scleroderma, Rheumatoid arthritis, Sjogren's syndrome, etc. Or just you being in Alaska don't help, do you smoke, high anxiety, hormone or thyroid acting up etc. Treating this first would help with the rest, except Raynauds is not always acting or flaring up. How did you find out you had FMS? I am so beside myself of you not able to go see a descent doctor, I did not think that was possible. Well I should not say that, I have my share of incompetent doctors that I have seen over the years.


conniehurts - November 3

axxie, my best guess is that first came injuries from a couple of bad car accidents the worst being thrown out of a car at 65 mph and landing on my head on the pavement. I got up and walked away with no treatment for 20 yrs. I had migraines that would last for weeks at a time. I suspected fms for at least 20 yrs before I was diagnosed about 10-12 yrs ago. I had all the symptoms of ms so went to a specialist in Seattle who diagnosed fibro. Several years later I started having problems with my hands getting patriotic (red white and blue) when cold and feeling like they were dunked in hot oil as they warmed up. The dr I had at that time diagnosed raynauds. I was on some pretty heavy drugs, a lot of which I considered to be crap and gave me bad side effects. I had a disagreement with his business office when my insurance had paid over $20,000 in one year to him I owed him $2,000 and had to pay upfront for yet another test he wanted me to have. I couldn't do that so they fired me! I had to cold turkey off all these drugs at once. For the next 4 years I self medicated with ibuprofen, valerian tea and some other herbs that people suggested and in the process I tore my stomach up. Oh I almost forgot that I had a total hysterectomy for very severe endometriosis when I was about 30 so have been on premarin since then. After I got "fired" I couldn't even get a dr to see me for hormones or a sore throat so had a lot of er visits. They nurses at the er finally found me a wonderful dr who actually listened and treated me like an intelligent human being. Sadly 2 yrs later he left and now I have a dr that I don't trust who wont listen and I fear is not even knowledgeable about any of my issues. I went to a surgeon and another dr who did nerve studies on my hand and arm but wouldn't give me the actual results and was playing the cheat the insurance game. Since then I was also sent to another dr who took me off premarin and put me on an estrogen patch (and the difference is????), I just pray every month that my current dr will continue my pain meds!I have so many differing and strange symptoms that I don't know who to see or what to do anymore and as obamanationcare takes effect I don't know that I will get any care and it scares me to death! All I ask is a quality of life, to be treated like a person and to spend many more years with my loving hubby hopefully with time to sit under a shade tree drinking iced tea and watching our 2 horses munch grass at our feet. Being on heavy pain killers that isn't likely to happen as our level of medical care goes to heck in a handbasket! Gentle hugs and Peace Connie


axxie - November 4

The accident wow blows my mind, that you just got up from it and walked away, it's not when you are young that you feel it, it's when our bodies start changing. I would go back to the gp and say please check for my thyroid and also for high blood pressure, and if you have diabetes. Those 3 things you need to get checked. Then if all is well, then look at what you are eating, stop the red meat, eat soups with legumes, and eat pasta with a sauce that you add all kinds of vegetables and legumes. It will reduced your cholesterol. Drink lots of water, warm water if you don't want the sudden urge, warm water doesn't do that.
On another note, I am from Canada, but lived in the US for a while, I just did not like the medical insurance game, so after a few years, I returned to Canada, I did not want to loose my Canadian citizenship. We pay more taxes, but everyone has a health card and everyone has access to a gp. I read what Obama wants to bring in, and yes it's true it would be much better but social medicare is best, there is no one that does not get medical help. I don't know what valerian tea is, but I would just drink green tea, after eating your evening meal it helps to clean the system. Have you heard of krill, two softgel a day will help you feel less of the inflammation in your body, it works I take it. Again you need to evaluate what you take we are not all made the same.hugs and Peace


conniehurts - November 4

Axxie I know that you mean well but sadly I have known several people in Canada that committed suicide because they couldn't get any treatment for their pain and couldn't find the light at the end of the tunnel. My sister has a friend who comes to the U.S. for her medical care because she cant get into a dr for months at a time in Canada. Maybe it depends on what part of Canada you live in? Socialized medicine is going to be a nightmare worse than the insurance system we have always had. My hubby and I had no insurance for years and even with my health problems at least I was able to get into a dr. Of course we didn't live in Alaska at that time where drs are few and far between and good ones as rare as hens teeth! Sadly there isn't anything that we in the U.S. can do about the change in the health care system except hope for the best and prepare for the worst. I already know of one dr who closed down her practice because of our upcoming nightmare :-( and sadly she was a pain dr who personally understood pain and is in the area we plan on moving to :-( Gentle hugs and Peace


axxie - November 4

Reading your last post, I also know people who have committed suicide, being in the State, Canada or elsewhere we will always have those, and we can't blame the doctors. It's a choice they do to themselves, it being social or insurance or a combination medical cares, there will always be problems. At least, if you are born with a deformity or an illness you are covered and will get the medical care needed even cosmetic, which I have not seen in the US, at least not the States that I lived in. I know that there are many fascets with the insurances. Hopefully the changes will help people/families not be without insurance. As for no doctors in Canada we don't have shortage, some stories were very exaggerated at one point, because people did not read the story completely. I remember a few television on news about Canada not having enough drs. Sadly this was at the height in the 90's and 2000's era where we loast some drs. because they wish to make money and felt that the government in Canada did not want to pay the exorbitant prices some specialist were demanding. These left and went elsewhere, majority worked out a great deal with the government and are being paid quite well. The only difference is the way we regard the payment of doctors and their specialty. The good thing is, I can go to any clinic or hospital and I will be seen by a qualified doctor and will get referred to any specialist if the gp say's its necessary, no copayment etc. Anyway there's no Cdn that would cross the border to go live elsewhere just for medical. As for your friend who gets treated in the US, there's are people who have medical insurance that their employers pay premium and they have the ability to go elsewhere to get treated for a specific reason. I know of the Provinces, may not be able to treat a patient because they come from a small town, may have cancer and are treated in the STates, because of the urgency of the situation each province can and do sometime send patient across the border for treatment and is still being paid by the government province coffers. That always existed and it's not because of lack of doctor's it more just would cost more more to treat them in Canada and have an understanding of what the treatments are. I know of people who across the border from us who are US citizen and come and get treated in Canada because they feel they get better care, I guess it's to each their own. One place or other have their own set of problems and none can be perfect.


conniehurts - November 5

That is true, no medical care is perfect, some is better than others. Gentle hug and Peace Connie


January - November 16

Hi Connie - how big are the hard round bumps on your hand, and where are they located? Do they feel "mushy" and movable - or more like grains of sand? Aside from the bumps, I would guess - as you probably have, that you have some kind of neuro problem, maybe related to all your spinal issues? Make sure you get copies of the results of your neuro tests, and keep them in a file at home - so you won't have to repeat the tests later - or if you do, you will have a baseline to measure future tests against. If you're going to move, get ALL your records to take with you. It's SO hard to get old medical records, I try to get copies of records regularly now, especially of test results. It's amazing the number of errors in files - and the times lab tests come back with abnormal results, but I am told everything is fine. If I didn't review the records myself, I wouldn't know. You can google just about everything now, so it can help you understand what your lab tests mean.

Axxie mentioned MRIs, I just skimmed through the last couple posts here - but if you haven't had an MRI, I think they are the best at diagnosing problems like pinched nerves, bone spurs, herniated disks, etc. Especially, if you can get one, a Sitting MRI shows spinal issues clearly.

You mentioned being taken off Premarin - that is GOOD. Premarin is bad for you - it's made from horse urine and is not like human estrogen. It has been linked with cancers, so I can't believe doctors are still prescribing it. The estrogen patch is probably (?) better - if it is estradiol. You might want to do some research on bio-identical hormones - there are several different kinds of estrogen your body needs, not just one (which is what most doctors prescribe) - truly bio-identical estrogens are usually given in the form of creams. Suzanne Somers has done some very intelligent research on hormonal issues - and has written several books.

As for the new health care coming in… who knows?? I know several people who are very happy with their new insurance plans and the care they've received. As always, the problem we face is finding a doctor who is knowledgeable about our issues.

I'm very sorry you are in such pain and having such a difficult time finding a decent doctor. I live in a large metro area with top notch university hospitals, and I have the same problem. You just have to keep looking. After years of arrogant doctors who made dumb mistakes, I finally found a very smart CRNP who teaches nursing - she is now my PCP. She can refer me to specialists if needed, but she's wonderful for basic care - she listens and explains things I don't understand. I hope your move will get you to a better place with better treatment. Hang in there.


conniehurts - November 18

Hi January. The bumps are small, like little hard pimples almost but not really. I am going to try to do some research on arthritis because I believe there is a type that affects the skin too. I have had MRI's, cat scans, blood work, emg's and anything else they can think of to torture me lol. I am very wary of surgery , especially on my spine. The surgeon of course says its from the narrowing in my spine. I would believe that about the "dead hand" that I had but now with only 2 fingers affected (they wont quite straighten out by themselves)I will hold off on surgery as long as I can. I do not trust drs at all after many many years of such bs from them! As long as I can keep my pain under control, even tho I am very limited in what I can do I just cope day to day.
I have tried a lot of "natural" estrogen prooducts with no help so even with the dangers of estrogen I will keep taking it in whatever form I can get that will work. I figure it cant be any worse than going totally out of my mind and melting the polar ice cap singlehandedly lol. If you look hard enough someone eomewhere will connect anything and everything with cancer! Life causes cancer *grin*. I will check out some of Suzanne Summers books tho. Thank you.
I would like to know what area you are in if you don't mind since I am not sure where we will end up and if I can find what we look for in a place to live and good medical care at the same time that would be awesome! I must say I had better medical care when I lived in Atlanta but that is not an option for us to go back to. I was so happy with the dr I got a few years back and actually cried when he told me he was leaving the area! I would be tempted to follow him if he had gone to an area that was warmer than where I am currently but sadly its in a different (windier, wetter, nastier) part of Alaska. It scares me to move without a job to go to but how do you get a job from 4,000 miles away when it will take a month to pack and get ready to even start the drive down? My hubby and I have not been apart for more than a short time in 36 years and with my health the way it is he cant and wont leave me behind while he finds employment. Scary when just one of my meds will be over $2000 a month without insurance!
Gentle hugs and Peace Connie


axxie - November 19

Hey my evil twin, the bumps you are talking about could it be: It could be a ganglion cyst. They appear close to a joint and are made of the clear fluid (sinovial fluid) usually found in joints. The hand is the most common area; elbow is second most common.


conniehurts - November 19

I guess there are stories on both sides being there is some good and bad in everything. Gentle hugs and Peace Connie


conniehurts - November 19

Oops forgot to answer your question. The bumps are tiny, like pinhead size and hard as rocks, definitely not ganglion cyst. Had one of those on my wrist that got to be half the size of a large plum before I got it removes. It had wrapped itself around my tendons. muscle and bones! Would have been easier to remove had removed it sooner but I don't do anything till it starts hurting lol. Too many things appear in one form or another to run to dr for every little thing. I did ask dr what they were and she had no clue and offered no suggestions as to seeing another dr. With drs each having their own square inch hard to know who to see :-)
Gentle hugs and Peace Connie


January - November 20

Hi Connie - first of all about the bumps - I don't know if you have the same thing I had - lots of tiny bumps on my forearms - like big grains of sand just under the skin. I thought it was normal until an old boyfriend remarked that they were strange. Guess what happened when I went gluten free… after a few years, all those tiny little bumps disappeared. Gluten is linked with SO many weird (and run of the mill) health problems!

I hear you about not trusting doctors. Medicine is big business, and some doctors try tol sell you the most invasive, expensive stuff they can. Every specialist I've been to acts like spinal surgery is a snap. They never discuss the very real and serious risks. I know of two people who woke up from "routine" spinal surgery paralyzed, and a lot more who were made much worse by their surgeries. But I also know a couple people who did OK. I guess it all depends on your situation, what you can tolerate, etc. I don't ever want to go there!

I didn't mean "natural" estrogen products, like over the counter creams at a health store. To get the real bio-identical hormone protocol, you need a doctor who knows about it. They test all your hormones (estrogens, progesterone, DHEA, testosterone, etc.) and then send a prescription to a compounding pharmacy for the hormones YOUR body needs. The pharmacy makes the creams for you. The book Suzanne Somers wrote - I think its titled Ageless - is really good. I had a doctor who said he was using bio-identical hormones - and he was - sort of. Estradiol is bio-identical to human estradiol, so it's a good one to use. It's just that he was ignorant about the entire bio-identical hormone *protocol* - there are other forms of estrogen you should also be taking in small quantities. Some people need a bit of progesterone and/or testosterone too. It's all about returning your body to its natural balance. From what I've read, there is not so much "danger" if you are using bio-identical hormones, and if your patch is estradiol, it is bio-identical. I've read articles that say using the right kind of hormone replacement is probably one of the best things you can do for your brain and body. The dangerous ones were Premarin and Prempro. I'm amazed they are still being prescribed.

As for my area - family issues caused me to move to the mid-Atlantic East Coast, access to Philly, Baltimore and DC. I don't like it here, and would have moved, but I got sick and was not able to. I don't think you are looking to move cross-country - but if you are, I wouldn't recommend this area. Cost of living is outrageous, as is traffic, and the weather is bad for people with pain. There are great jobs, but most require a long commute into the cities. I'd love to find a nice little town that's always warm - but I've moved a lot, and don't know that I have the stamina for another one. Hope you can settle on a place you like - Alaska with all the cold weather sounds like a tough place for a fibro person. But as tough as moves are - if you are still strong enough to do it, do it now - before you get too old! As for insurance - I know a couple of people who have signed up for Obama's new insurance and are happy with it. Hope you have a relatively pain free week!


conniehurts - November 22

Hi January, I am definitely going to talk to the dr about those blood tests. She doesn't have a problem ordering high priced, invasive, painful tests so a blood test shouldn't be a problem should it? I had missed that side of the story some how. I know that when I first had my total hysterectomy they had me on a testosterone but I quit taking all my hormones at one point and never got back on the testosterone. It has been 30 years and not one dr has helped me, even the "specialist" that my current pcp sent me to.
We definitely do not want to be in the area you are in, nothing east of the Mississippi and definitely not a big city! Seventeen years in Atlanta suburbs was enough of that for a lifetime! We both grew up in very rural areas and currently have horses so must be in an area that we can have land , I will never board my horses if I can possibly help it! I don't know how I will make this move. Sadly, like everything else it will all fall on the strong , loving shoulders of my hubby. His health hasn't been good since he had all but 8 inches of colon removed from FAP that we luckily caught when it was ready to turn to cancer but hadn't yet. He is a heavy equipment operator and has never worked am inside job in his life. As he ages it is getting harder but a change in the hours he works will help. Right now he is working 12 1/2 hour shifts and it is 4 days 3 off 4 nights etc. Even with 7 days off every month it is very hard on him, especially since everything like cooking and caring for the animals falls on him. It would be much easier for both of us to live in a place that had running water and indoor plumbing!
Gentle hugs and Peace Connie



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