That is a tough tough thing. Have you tried many new drs?
When I change doctors I usually make an appointment and bring my meds in with me along with my records. Generally they just refill everything. But I haven't got any narcotic RX's--so that could be a problem.
Many doctors are reluctant to RX them period--but then maybe they will in time.
Or could you take your prescriptions to the ER? or ask your pharmacist if they can give you advice? maybe they know a doctor you could try? Maybe your insurance company?
Leave no stone unturned I guess. Is there a support group in your local town? cuz maybe someone there has the same drugs and could share info about thier doctor?
So sorry for your dilemna I will pray for you. maryView Thread
Hi... I've wondered about polymyalgia too. I understand what you are saying . I do not have positive tests for inflammation but I definitely do have inflammation. NSAIDS have consistently been helpful to me as well as steroids for short courses.
I'm also using gabapentin. Recently I am flaring pretty bad which is hard to deal with. For me--this fibromyalgia definitely involves inflammation though there is no way I can prove it to a dr. Such is the way it goes.
Lately it seems all the research is about the brain--which I think is good and bad--good cuz I think there is something to it--but bad cuz I think they are missing an elephant in the room. I think anyone who has chronic pain is going to also have some brain chemical changes-- but that doesn't mean that's the CAUSE Of the pain.
Its all very frustrating but it is what we must learn to deal with . I'm not saying I have always suceeded at 'dealing' well. I'm trying.
There is a great loss to face when you first find out about this diagnosis but there will continue to be more losses for most of us. As this illness tends to change over time and effect different parts of the body and change the way we life.
For instance last week I informed my daughter I can no longer do daycare for her little ones. I loved doing it-- but this recent flare I am sure was brought on by it.
I am 56 and I got this when I was in my 20s. Its a tough thing, it is life changing. Many of us wish we had some other diagnosis-- for me I have wished thta becuase this illness doesn't get much respect & becuase it is really a lot more debilitating than many other chronic illnesses that do. LOL. Sort of how it goes.
Using steroids long term is a bad idea--- you gain weight and its hard on your body. Its probably why the doc doesn't like it. But then using nsaids long term or opioids long term all have their problems too.
Mimi uses supplements only I think--along with pacing.
I dont do that becuase I havent found a supplement yet that can deal with inflammation pain--and that is my worst enemy.
I am willing to believe that fibromyalgia makes that pain worse perhaps-- than it should be. I tihnk it is very very common to have more than one illness with fibro.
It is not impossible for a doctor to be wrong in a diagnosis but what you describe is very likely still fibro. Also--you would probably find in time that the steroids don't continue to work as well. I have never found a drug that worked long term with this thing. Part of having fibro I think is reactions to drugs, and drugs not working as well as they ought.
Like Mimi I suggest you learn what is helping others here-- one way is ask specific questions and see if someone comes up with a good idea for you.
Welcome to the group, sorry you had to join us. maryView Thread
Hi to you all-- and welcome to Mel as many have said. It isn't often it seems that new members post in the daily check in threads. So nice to have another one.
I am another member of the "slept in the recliner club" been dealing with insomnia this week-- grrr. So yes flared up.
That goes hand in hand. My sacroillitis is acting up which is really a pain-- I mean that. LOL. Also other areas, but that one is getting to me as well as my right ankle and foot which --I know from experience is due to muscles in my calf. So I will heat up my rice bag next time I get up. I just sat down and put feet up after doing granny daycare and FORGOT my rice bag--don't you hate that? when you finally sit and get all arranged and realize you need something?
We got HUGE news this week. My oldest is moving his family to this area. His new position allows him to work from home and all he has to do is make sure he is near an airport for travelling. So he & his wife decided to come stay with us a while and look around this area. We are in SC but they are thinking they will settle maybe near Asheville--we shall see. They have 3 of my grandkids so I'm thrilled as they have been living in WA state so I almost never see the kiddos. Haven't even met littlest one yet.
Of course this means I will need to find ways to make sure i gt some peace in the day too even with a lot of folks in my little house. I do still do daycare all day here M-FR- and now the little ones will have their cousins here too--so 3 in diapers and a nearly 4 y/o and a 5 y/o will be in my house much of the time. I guess I won't be lonely.
Thinking of adding a recliner and tv to my bedroom so I can go hide if need be in the evening-for a little rest.
Nancy-- that is very interesting! I find often that pain in one area is caused by something else so I had already kind of thought of that--and so when things are worst I rub and try to calm down everything! Drives me nuts the way things are. I feel sometimes as if I have chronic tendonitis of EVERY tendon. grr. anyhow though I don't have bad days all the time--if I sleep good and the weather is ok, and there is little stress, and... and... LOL then things are not too bad.
I live in SC so it has already been HOT for a while. We've been in the 90s the past couple weeks I think now, and very humid. I am just having difficulty even running out to my car lately.
I watch grandkids so they really need to go outside a little so I have put a sandbox & kiddy pool out for them. I sit at a table with umbrella while they play . We keep that to mornings only and no more than 30 min. And not every day.
I also walk with my hubby when he is here but only morning and again--not every day--not 2 days in a row.
Other than that I stay in the AC cuz it just makes me so miserable--and even in the house I am flaring some and having trouble sleeping the past week or two. MaryView Thread
Hi, that would be hard to tell I think. I dont think there's been research on it. It is common for fibro patients to also have allergies and I think is common for one symptom to exacerbate another so maybe so..Bummer---my allergies so far are all things like dust and pollen would hate to be allergic to a pet. MaryView Thread
I I am sorry, that is probably one of the more difficult things. It is just really tough it seems for people to 'get' this. We who have it don't even get it!
Imagine how it must be to observe your loved one having good days and then crash, and simply NEVER get totally better. I don't know if they can understand. I guess the only people I know who consistently 'get this' are those I know who also have this or another chronic illness.
These will be your best friends now; they do understand. For me-- Prayer is also a really good friend. MaryView Thread