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Old 07-29-2005, 04:30 PM   #1
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Official DX from Rheumy

Well the rheumy dr dx same as my regular family Dr., Fibromyalgia, and arthritis in the spine and the neck per xray. He changed my meds again, I went today and got an injection of steroids in my shoulder, why I do not know, I have been sent to PT had my first visit, Rheumy dr and PT both said if you are looking for a miracle pill there is none. And that i will live with chronic pain from now on. Pt said I would have to change my lifestyle to make it. Rheumy dr told me to by a book on fibro because i will have alot of strange things going on. I have an appt with shrink on the 10th, i guess they will tell me i am crazy. Has anyone else had injections, I can not see how this is going to help my muscles. Also my legs ache so bad ,the other night if felt like bee stinging me all over my legs, feet burn, hands numb, what do you take to help this, because I have to have something. I see my family Dr next week and if anyone knows something that would help, please let me know, I do not think the drs know really what to do, but they are trying, thats is all I guess I can ask for. God bless you all And thanks for being here for me.

 
Old 07-30-2005, 11:33 AM   #2
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Re: Official DX from Rheumy

hello hummingbird, there are some doctors that feel that pain meds won't do anything and don't like to give it to us fibro patients. that really upsets me becasue it is not fair that we have to be in pain. yes exercise does help us and we do have to change the way we live our lives but sometimes we also need something to take for the pain. when i went to one doctor she gave me ultram and skelaxin which did nothing for my pain. they seem to not understand that yes it may help some fibro patient but not all of us have the same pain. some have it worse than others. you may need to find another doctor that understands how much pain you are in so that way he can prescribe something for you. it sucks to be in pain. did they prescribe you anything?
amitryptaline helps alot of fibro patients along with a muscle relaxer sometimes.
i am sure you will get alot of very useful advice on here after the weekend.
goodluck,
robin

 
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Old 07-31-2005, 08:22 AM   #3
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Re: Official DX from Rheumy

Thanks Girl75
They gave me Feldine and muscle relaxers, well Friday which was my third day of Feldine, I had and allergic reaction, so I am the wekend without anything because the office is closed, and I am truley hurting, so we will see what he gives me Monday. I hope it is something that helps because the pain is pretty unbearable right now.

 
Old 07-31-2005, 09:51 AM   #4
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Re: Official DX from Rheumy

Quote:
Originally Posted by hummingbirdhope
Thanks Girl75
They gave me Feldine and muscle relaxers, well Friday which was my third day of Feldine, I had and allergic reaction, so I am the wekend without anything because the office is closed, and I am truley hurting, so we will see what he gives me Monday. I hope it is something that helps because the pain is pretty unbearable right now.

Hi Hummungbird,

So sorry you are having such a hard time, I hate to see anyone hurt.

Feldene is a very old medication and I know of a lot of people who have had very bad reactions. One on my friends almost died from it, I don't know if it was an allergic reaction or what, she was found on the floor of her bathroom in horrible stomach pain and hardly breathing. I will not bore you will details but the doctors went oops!

I won't touch that medication, not just for what happened to my friend but also when I was young it gave me terrible stomach pains. They also gave it to my husband who has a history of stomach problems so I would not even let him take it.

A blessing in disguise that you coudn't take it. I don't know what your symtoms were but IMO it is not a good med. For some I am sure it works. There are so many other meds to give that I do not understand why docs still give this out.

Ask the doctor for samples of meds he prescribes you. A lot of times they have them but forget so all you need to do is suggest that he give you samples before you buy a script, it can't hurt to ask.

Make sure he explains why this feldene worked on your body like this, even if it is a guess on his part. That way it stays in his brain that you should not take it nor anything in that family.

Tell him everything about the stinging in your legs, etc. Be your own advocate. You obviously need something for your pain so do not let him make you feel it is in your head nor not as bad as it is. Sometimes they do not know what to do, however, until they can get it together you should not have to live in pain. I have had fibro for 11 years and understand what you are going through with docs.

Tell him you didn't call the office over the weekend since you didn't believe anyone would help you. There is always a doctor on call, unfortunately, if it is not your doc they do not help much but next time give it a try. Having an allergic reaction to a med is serious and they should take it as so. You could have ended up in the hospital IMO. As you can see I do not like Feldene at all. There have been warnings about his med for years.

When you see you family doc tell him that you feel that you are getting no where with your care. A good doctor will listen to their patients and nor take offense. They are human and have feelings. THey need to know that you are unhappy and suffering. I am looking on the bright side and saying that he is going to help you. You should not be in unbearable pain, espeically when you have a doctor. That is unexceptable to me.

AS Girl 75 said, not all docs like to give something for pain to fibro patients so you may need to go through a few doctors. If it becomes an issue, get your phone book out and call the docs and ask the nurse if they treat fibro and what is there policy. Do not be afraid that they will judge you, they usually do not have the time. Don't get discouraged, eventually you will find someone.

I asked my GP to send me to a pain speicalist and this PM doc has been my rock. Never judging and knowing I would not be there if I wasn't hurting. Since you already are diagnosed, this could be your best route. In the meantime, tell your family doc again what is going on and how you are feeling. Hopefully the compassion a doctor is supposed to have will come forth. He should try everythiing in his power to help you, that could be sending you to a PM doctor as well as a rhuemy.

Sorry to ramble but I get a little hot under the collar when anyone suffers. THere are too many options out there to not get some relief.

Going to a shrink is not a bad thing, it can help so much to talk with someone. When you are in pain it does a number on your brain as well as your body, so don't look at going to the shrink as a bad thing. I couldn't find one in my area otherwise I would have gone in a heartbeat.

By changing your lifestyle they probably meant that you will have to do things differently. To say "Live with it" is a sweeping statement so try to chalk that one up to them having a bad day. With fibro, depending on how bad you have it, you have to set limits on yourself and you will have good and bad days. This board is a great place for you to be.

IN NO WAY AM I A DOCTOR OR A MEDICAL PROFESSIONAL, I SPEAK FROM EXPERIENCE ONLY AND OPINION.

I am a little under the weather today so I hope I got the succession of doctors correct.

Good luck and please keep us posted. I am very interested as to see what the docs have to say, everyone else on this board also cares. You will get alot of info and support here.

Peace and love, Janet

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Last edited by hangin; 07-31-2005 at 10:46 AM.

 
Old 08-01-2005, 08:52 AM   #5
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Re: Official DX from Rheumy

Hangin, that was great advice! How are you doing these days and how is your hubby? That was wonderful of you to reach out with advice to someone else when I know you are dealing with your own problems these days.

Glojer

 
Old 08-01-2005, 10:25 AM   #6
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Re: Official DX from Rheumy

Hi there Glojer,

It always makes me feel good when I see a post from you.

We had to go to a luncheon for my hubby's work, he works in non-profit and he has to go to a lot of these. Usually I do not go, this time, he wasn't working, the tickets were in the thousands and we got them free from the people who owned the winery where it was being held at. Part of the proceeds went towards his kids (he works with children). It was so much fun and I could tell my husband was over joyed that I went. It meant so much to him. He was beaming, it was at a beautiful day and they raised money in the millions. It was awesome to see people who have money open their pocket books and give so much to the children.

This is what I was trying to get across to hummingbird, there are some things you can not do and some you can. I had rested up for days to go to this. After that I have been in bed for two days. I knew that would happen but the pay off on my hubby's face was worth it.

Hubby isn't doing well, he goes to the doc today. I think he is finally realizing that he has this lupus for life and as with fibro, has to change his life-style. I am going to ask you this Glojer, do you have a lot of joint pain from your lupus? It must be difficult to tell the difference between your fibro and lupus, you poor thing.

My hubby told me the other day that the biggest worry he has is not being able to work and going on disability. Men are strange creatures, they keep things bottled up inside and then when they tell you in a sense it is a relief. I told him that we would have to cross that bridge when we get there.

How are you doing? You have such a sweet heart, I can tell. I know you suffer and I do not hear you complain. Are you feeling well? I know that you are dealing with a lot of stress with you hubby right now. How is he?? I am confused on the dates of the tests, if you told me I do not remember.(Remember that fibro fog, LOL). Last I heard they were keeping an eye on it. It that right?

Well, my dear friend, gotta go and re-pot some plants that I have been meaning to do for 2 months. That is how it is with fibro and any other type of illness, you do what you can, when you can.

Take care, I was thinking of you as always and your hubby. My love to you both.

Hope everyone is doing well and takin care of themselves.

Peace and love,

Janet

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Last edited by hangin; 08-01-2005 at 03:28 PM.

 
Old 08-02-2005, 09:01 AM   #7
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Re: Official DX from Rheumy

Hi Hangin!

That's the way to do it, rest up so you can have some fun. I think that was a wonderful thing you did for hubby, but I'm sure you do a lot of wonderful things for him. It sounds like it was a great day and certainly made both of you feel good in more ways than one. When we know we are doing something to help others, it somehow makes our own discomfort seem so much less.

I'm glad your husband is starting to learn to live with his lupus, I think that is half the battle. It is hard for men to give in to the notion that they are not invinceable, but I see nothing wrong when they get to the point they finally except they have a problem to consider disability. Like you said crossing that bridge when you come to it is the best solution. That gives your hubbys mind time to think and absorb and accept what is happening.

Yes I have joint pain with the lupus, but the prednisone the doc put me on 4wks ago is helping. I still have some pain, but I am only on 5mgs a day and the pain is certainly something I can live with. I really don't want to go much higher, worried about weight gain and all those bad side effects. I can tell some difference between fibro and lupus, my fibro pain is more the burning constant pain that stays around my joints, and of course in my other muscles. Then I have the neck and back pain and soreness and who could forget those annoying shooting pains that make you jump. Well, we all know the list goes on but the lupus joint pain is a pain in the joint that hurts and aches all the time without meds and makes the joints feel inflammed and hard to move. So I guess I can tell the difference.

Thanks for asking Janet, yes my hubby is being monitered. Isn't that great, no chemo at this time. Of course we are praying that he will never have chemo and that 30yrs from now they are still testing and saying it hasn't shown up again. He says he finds it so weird to think he has cancer, the docs cannot say he is cured because they still don't know whether it has spread, it is too soon.

I know what you mean by needing to pot plants for 2mo. I finally did a little clipping and the like with some of my plants yesterday. Today will be a trip to the pharmacy and grocery store and that will do me in. I hate grocery shopping, but have put it off for so long. It is of course the fibro that makes getting through that store and getting it home and put away so hard. Thank goodness I have my hubby home and able to help these days. I really don't know how I would do it without his help. I admire all of those with fibro who do!

Take care Hangin

Glojer

 
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