Hi all, I'm a Newby on here. Diagnose... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hi all, I'm a Newby on here. Diagnosed with Fibromyalgia & CFS/ME. Hoping to chat with other sufferers (support & info). Xx

jellynpain profile image
15 Replies

Has anyone out there found a helpful pain killer (always hopeful

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jellynpain
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15 Replies
Chirnie profile image
Chirnie

Hi

A warm Welcome u will love this forum , I only Joined a week again and every one is so friendly :) I'm in pregablin sertraline and tramadol ! They work for me but everyone

Is different

Lilbit1234 profile image
Lilbit1234 in reply toChirnie

I as well take neurontin but makes me very sleepy and can't tell much different I used to take cymbalta worked well but to many side effects so waiting on lyrica being hopeful!!!:)

Chirnie profile image
Chirnie in reply toLilbit1234

We'll I hope lyrica works well for you!! It has helped me a lot but everyone is different .

Chirnie profile image
Chirnie

Hi

A warm Welcome u will love this forum , I only Joined a week again and every one is so friendly :) I'm in pregablin sertraline and tramadol ! They work for me but everyone

Is different

Lilbit1234 profile image
Lilbit1234

I take methadone and vicodine but I'm experiencing extream hip pain can't walk next step is removal of hip bursa sacs

Rosetta2014 profile image
Rosetta2014

He He He LOL You're soo Funny, I'm still waiting with baited breath, But miracles do happen, i been a member for about 2 months and that's the first thing I asked and I'm finding it's usually the first or second, I am seeing a pain specialist who does research in fibro pain management he has me on Buprenorphine 8mg/ 2mg naloxone sublingual tablets, this drug was not cover by my insurance because it is not used for FM so he had to get preauthorization. So far its helping everything but the back spasms they are still severe and keep me from walking or standing for any lenght of time. But they are slightly better than last wk. it has one side effect that could have hindered me from taking it and that is it lowered my blood pressure a lot but I am hypertensive and I am on 3 meds so I haven't been on any of them since starting the med. my b/p is normal. By the way I'm in the USA and I was told it's not available in the UK. But at least the researcher are working on it.

Nice to meet you

jellynpain profile image
jellynpain

Hi and thank you for your replies. Fab to hear from you.

I'm in the UK and it seems possibly different countries get different medical help.

I have a very good GP, very supportive but Consultants are a different story. Fast to 'poopoo' things and get patient s off their clinics asap (all down to money it appears and not a caring professional attitude when they go along with).

I am on low dosage of Amitriptyline which I'm not sure has much improved things. I am apt increasing though due to gastric problems and so many other issues (too many to list... you'd fall asleep if I did loll). Otherwise left to get on with things.

Interesting to hear re severe hip pain, I suffer that alot. Everything fluctuates unpredictably, from day to day, often hour to hour. Grrrr....nightmare. My mobility can go from almost zero to short able periods.

I've lost the plot on what parts are CFS/ME or Fibro relevant.

I'm well into my third year now, so accomplished at 'getting by' and acceptance... even got a sense of humour at times (taken a while find it again!!!

Fibrofoggiest profile image
Fibrofoggiest

Hello jellypain and welcome to our forum, which I consider to be the best, the most informed and the friendliest. I would also suggest you take a peek at our mother site fibroaction.org where you will find a huge amount of information and advice :-)

You say you have a good sense of humour which is great as a lot of believe that laughter releases feel good endorphins. You will soon find the fun posts and one of our wonderful

Administrators - gins, does a lovely post in the morning where we can all get together over a cup of whatever takes your fancy, and enjoy lighthearted chatter which is great fun :-) so do feel free to join in :-)

Having read through all the lovely responses to your question, I should point out that we always advise members to talk to their own GP about their meds as pain control and all the things associated with Fibro are all so very individual. As you have already found, GPs can be good and yet consultants almost sceptical, but if you have your good GP then that is great and you can work with him/her in conjunction with consultants, they (your GP) can often offer as good suggestions too.

Sending lots of welcoming positive vibes your way :-)

Foggy x

rosewine profile image
rosewine

Hi welcome to the site. I am on several lots of painkillers but have osteo as well as other health problems. The only one I am on specifically for fibro is Pregablin (Lyrica) which has certainly helped with the burning, shooting pains and a bit with the tenderness and Butrans patches have also seemed to help my upper back but not lowwer back and hip pain . I too have very bad hip pain which the doctor was sure was bursiritis but on having Xrays I actually have osteo in my hips as well as my back and neck which is the reason I am in such bad pain. I am being referred to a physio for this pain initially but haven't got an appt. yet. It is difficult for any of us to say specifically what could help as we are all so individual. I am rather like Jellynpain as I can start off quite well with walking but as the day goes on the pain and stiffness gets worse and then I can have periodsthat I can hardly walk. The only thing that helps this is having a complete rest or an Epsom salt bath. Hope you find friendship and help on the site, everyone seems very friendly and supportive as we are all going through similar experiences and can empathise with youx

Hi love welcome to the group I have had it twelve year I'm on a few pain killers just started cymbalta so fingers crossed as I'm screaming inside with pain big hugs xx

TheAuthor profile image
TheAuthor

Hi jellynpain

I sincerely hope that you are feeling as well as you possibly can be today? As many of the members have already stated that we are all unique individuals and therefore we all tend to react differently to both our illness and our medications.

I have pasted you a link to the Fibro treatments page from our mother sire, FibroAction, so I hope that you find this useful:

fibroaction.org/Pages/How-I...

I want to welcome you to the forum and say that it is wonderful to make your acquaintance. I genuinely look forward to bumping into you around the site.

All my hopes and dreams for you

Ken x

joed profile image
joed

hi jellynpain ive had fibro me/cfs for over 10 yrs diagnoised just under 3yrs been through seeems like every med and treatment in the last 5yrs havent found anything that suites just staring seeing a physio thinks i may have a tilted pelvis which may be causing my servere thigh pain currently im taking zapain and perskindol gel both take slight edge of well thats enouth bout me welcome to this friendly sight hope you are feeling as well as could be today joannex

jellynpain profile image
jellynpain in reply tojoed

Hi Joanne,

Thanks for your message. So pleased you did as I have a tilted pelvis! Not something ever considered. Mine was discovered after xrays taken after a difficult childbirth sometime back. I will mention to my Dr. This being the case for you have you been suggested a solution?

After saying that my pain isn't just in the hip area/very upper side of thigh, many others, but very interesting that tilted pelvis may be part of the problem.

Please would you let me know what the Physio suggests.

Hope your day is ok xx

mitziblue profile image
mitziblue

Welcome sweetheart. So sorry for your diagnose. I had to go to a pain clinic. I'm now on Opana ER and it has saved my life because I was in so much pain before that I couldn't even sleep, or relax from the muscle tension. Hope this helps!!! xxx Mitzi

jellynpain profile image
jellynpain

Hi Mitzi,

Thanks for your message

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