heather or anyone?

[uk2]

Hi All,

I've got my pain clinic asssesment today, i phoned my support team who work with my consultant and got talking to a lady there about what i should do about if to stay on requip or not and she said i shoulde even though it does cause emotional inbalances specially if your head is not in the right place as well yet my GP thinks i should come off it.

The lady also mention about the fentanal patches that i was on and that i'm on such a high does the highest there is which are only used on terminally ill cancer patients and that its a drug that in america is not liked much as its an opiod. Has anyone else heard of this?

She also thought i was sufferign from a condition called myofascial pain syndrome on top of the fibro and this is why my mobilty is so bad and my muscle constantly solid and not relaxed and that it can be treated with triggar point injections and to find a special physio who can help too and to ask about this at the clinic today.

has anybody else heard of this pain syndrome? maybe there is so light at the end of the tunnel.

sam x

[uk2]

Quix

Thank for link hun. x

Heather.

I got your PM and suggested both drugs to my GP but she suggested i stayed on the medication the rheumy has set for now though she wanted me to come off the requip but i've recently talked to a lady from the fibroaction uk and she suggested to stay with it and that i need some CBT to help but you have to go to them for that all counciling you do and i can never keep up with hte appointmments thats why they taking me in on this input residential 3 week thearpy treatment as i cant make the pain clincs course either. I'm abit frightened about that but i should here in 6 weeks to be away from my family is really scarry and for them to push me hard and not understand my condition as all physio's seem to have an idea about fibro and some dont even know about MPS. Still faith in God. I feel for you and your son in law so but at least we have each other are faith and our sense of humour. I was reading the bible last night and this scripture jumped out at me

"when i think my bed will comfort me and my couch will ease my complaint,even then you frighten me with dreams and terrify me with visions,"

Thats how i feel being on this new drugs with my pain

But if you read on in job we all know that God blesses him beyond what he could imagine and although he feels like losing his faith he does not, and that gives me and us all in that place one day God will bless us beyond are dreams.

spastic

I'm glad you got the right dx now, has it helped getting the right drugs, how come they did not spot arthritis by blood tests.

I've heard fibro and MPS are the worse mix and a friend sent me an american book that covers both condition this DR had it and wrote an amazing book on all the sx and treatment of both.

kathy

i hope they find the cause of your pain, i dont know where i will get these injections i think i have to wait to go into the hospital to get these injections so there is a wait i can go private but i dont have the money for that so i'll have to wait.

swallow

thanks for asking hun got to wait for residential pain clinic which is a 2 mth wait!! i can go private but i've not got the money for it.

shadowsister

i feel for you hun so much you are in my thoughts and prayers always

love sam

[ShadowsSister]

Hi, I have an internal Morphine Pump. have had MS for 23+ years. Was given the label of Chronic Progressive so I am not in line for any of the new treatments they are coming up with. I have to use oral morphine for pain break through. This doesn't address the bladder pain, but does help with the bone pain.
You may read my journals if you think they might be of some help.
I will keep you in my prayers...
Sending you Hugs across the ocean{{{{~!~}}}}

[sllowe]

Bump for Sam.

How'd you make out?

-Shell

[Akcowboy]

I have had them in the past as less I think there are the same for my back but I get really little help from the ones that I have gotten (maybe a day or 2 at best) and now I'm on perkasets (sp) for most of my pain but I'm sure that will not last for long.

   Cowboy

[Fluffysmom]

I hope that your appointment today goes well.  

I've had trigger point injection and they helped briefly.  I have had the suggestion of a myofacial pain syndrome diagnosis a couple of times, but other things showed up as the cause of some of my pain, so no one has quite figured it all out.

I'd suggest you give it a try.  I have no issue with needles, and appreciated even the brief respite from some of my pain.

About Fentanyl patches; a woman in my area was arrested and convicted for dressing up as a nursing assistant, walking in to assisted living centers, and stealing the Fentanyl patches off of patients, and then selling them on the street, where they apparently bring a high price.  That kind of garbage is what gives such strong pain relieving options a bad name.

Wishing you well,

Kathy

[spastic]

Hi Sam, I have had trigger point injections, they do help, if only for awhile.  I get injections put into my hips, especially after the long drive to the Dr's office.  Mine have only lasted for a few hours and by the time I got home, it was worn off.  They thought at first I had fibro and CMPS (chronic myofascial pain syndrome) but it was the early signs of the arthritis.

The bad thing about the myofascial pain syndrome, is the physical therapy for it flares up the fibro and the pt for the fibro flares up the myofascial.  Its a bad combo to have.  There is a really good book on both subjects and its called A Survivals Guide to Fibromyalgia.  

But I would definately go have the injections, any relief, if for just awhile is worth it.  Have you checked out the National Fibromyalgia Association?

Many Hugs & Love,

Ada

[doni54]

Hi Sweetheart, it sounds like Heather has reached out to you and given you some great advice.  I wish I knew more about all the meds, but since I don't take anything, I'm not much help.

I am here for you, always, and it makes my heart feel so good when I open the forum and I see that "UK2" up there.  You have been sorely missed, my friend, and I am so glad you are able to be back with us.

Take care and know that you are always in my thoughts and prayers.

Love & Hugs
doni

[Heather3418]

Yes I have heard of this pain syndrome, Sam, but I have yet to hear anyone that suffers from it, speak of real relief.  The trigger injections are suggested and have even been suggested to me.  I know they can bring relief for a little while, but it's like anything else, you have to keep going back to have another, then another.  I just don't know if I have the mental strength to do it.  I do hear that it DOES bring great relief, though.

My son-in-law is on the Fentanyl patches for his pain from Lupus.  He says that he couldn't live without them, but still says that do not address his overall pain.  He is in continual pain, like so many of us.  He too, has been offered the injections, but as he tells me, "Mom, I am in pain in so many areas of my body, the injections would be many.  I wouldn't even be able to drink Ice Tea, without sprining a leak, somewhere in my body."  At least my precious son-in-law still has his sense of humor throughout all of his pain.

Sam, I wish I had the answers.  I really do.  I did speak with you through a PM and tell you about two new drugs that I am on to help with the inflammation.  They are kinda tough on your stomach, but hopefully I can find a way around that.  As it is, I been taking something for GERD most of my adult life, so it seems that anything upsets my stomach.  Drugs that could really help me get off the opiate that I am currently on, which does little.

Please keep us updated and let us know what you find out about how they are going to try and treat you.  As much as I hate to say it, I really think the trigger injections may be of some benefit to you, so at least you can get around without so much pain.  Maybe even getting out of the bed and have a relatively pain free day.  I'll say a prayer for you my precious friend.

We are ALL here for you, 100%.  I know that none of us can take away your pain, but we can be here for you to listen....there isn't a greater gift from God than the love of  friends.  Friends ARE gifts from God, in my opinion.  Having so many of them have enriched my world, beyond measure.  It all started with this Forum.  Gosh I am so thankful for my friends here.  Where would I be without them?  I don't want to think about the alternative...

I send you gentle hugs and much love, dearheart.  

Heather
Earth Mother

[Quixotic1]

I'll be on later today, but try looking at this link:

http://www.fibromyalgia-symptoms.org/fibromyalgia_mysofacial.html

Q