Meds advice. ..?

[AngelinaN]

Hi everyone

have been struggling this last 3mths with the amount of meds I am taking for not only APS but fibromyalgia and spine problems

I have now gained another 10kg and feel angry & frustrated and still in pain.

now I want to chuck everything... rivaroxaban / pregabalin / tramadol / diclofenic / oramorph / and going back to simple asprin for anti coag and paracetamol

then using food therapy to get well.....

Is this suicidal?? Can I have your thoughts - think I need a witch doctor at the moment and some good old fashioned home remedies

thanks so much

Angie

[MaryF Administrator]

Hi there, sorry things are so rough, please don't ditch your anticoagulation, and push your GP and consultant for more help. I am afraid people are often told they have Fibro when actually it is an under active thyroid which does not show up in the TSH test, if not treated you will feel awful, I know I did. An under medicated slow thyroid will case weight gain over time. Also make sure they check your D, B12 and iron. MaryF

[MaryF Administrator]

ps: via Thyroid UK: thyroiduk.org.uk/tuk/relate...

MaryF

[Manofmendip]

Hi there.

I fully agree with the advice that my colleague, Mary, has given you.

Dave

[panda60]

I really sympathise with you as I too have fibromyalgia as well as Hughes and find it impossible to lose weight. But you shouldn't stop any medication without talking to your doctor. My fibro support group leader is very good at finding out about alternative remedies and some have found them very beneficial. But it is difficult to try them when you take warfarin!! Have to confess that it was only when I forgot to take it for a few days that I appreciated it as I was in a pretty bad way and think I probably had a TIA as my balance was hopeless. The one thing that I have really found made a difference is vitamin D. The consultant who diagnosed my fibro told me a lot of his patients were deficient and when I was tested my levels were seriously deficient so I had a very strong dose for three months and my aches and pains improved without doubt.

If you haven't been on the HU fibromyalgia support site have a look. They are a great crowd on there and have a wealth of information.

Take care.

[Debbweb01 in reply to panda60]

They say I have it too, but I'm wondering if I don't have Fibromyalgia? I am thinking maybe it's been The APS all this time! Docs said I've had it most of my life! They waited till I lost my left leg to find this out! I too am Vit D deficient! I am glad ur aches and pains have calmed down! I'm hoping it does soon for me too! I just can't imagine living my life like I've been since July! Not a happy camper!!! Lol... But still keep on Truckin'

[AnnNY]

A lot of people gain weight on pregabalin and another drug which is very similar called gabapentin. After I had a seizure a neurologist put me on gabapentin and I gained 25 lbs fast. It didn't seem like it was going to level off, so I quit taking it. I just don't think the extra weight is going to help me, and 3 years later I haven't lost it either.

It can help with fibro type pain, and nerve pain, but it was one I had to toss out.

[Ozchick]

I don't have Fibro (well I don't think I have), but I do have chronic pain from Raynauds and I found that Pregabalin was less than useful for me. I put on a lot of weight with Plaquenil gaining a Kilo a week over 12 weeks with no real benefit. I've taken off a few Kilos when I've stopped and now on Targin 10/5 daily which manages the pain and at least I can go walking again. One of the opioids I had (Jurnista) had me off my face and I dropped that one very smartly! Most days are OK but I find the phantom pain gets me down. Nearly 2 years on after amputating the finger it's still irritating me!!

[Debbweb01 in reply to Ozchick]

Wow my phantom pain went away for a long time then suddenly came bak out of nowhere,with a vengeance! I had my leg amputated in Jan 2015! Due tobAPS, I'm newly DX'd! Be well and GODSPEED

[Fra22-57]

Hi Angelina..I have APS,RA + Fibromyalgia and am on loads medication but I darent stop any incase I get worse so I wouldn't if I was you.

I didn't know pregabalin increased your weight and I am on that.I thought my prednisolone and not being energetic now had done that for me so I know more now.When you are not getting anywhere apart from more tablets given it does make you have bad thoughts.I feel spaced out with the pregabalin.I think like me you need to be more assertive with doc.not rude but say what you want and are not happy with and ask for alternative drug to try.there I go again giving people advice when I don't do that myself.

[Lure2]

Have you read above what the Admins have said?

Do it again because it sounds very wise in my ears.

Kerstin in Stockholm

[Kbjp]

I have APS and fibromyalgia and I am taking warfarin and Cymbalta. The Cymbalta helped my pain a little overnight the first time I took it. I have APS joint pain too. I am taking the very lowest dose (20) but I am going to ask my doc to increase it to 30. It is also an anti-depressant which I figure can't hurt with all this going on, and it seems to reduce my appetite too.

[Debbweb01 in reply to Kbjp]

Hi Kbjp I hope you're doing well! I was diagnosed with Fibromyalgia and years ago with MS! One doc said yes to MS other opinion said no! I took the no and ran with it! I just am not so sure I have fibromyalgia at this point! I was recently diagnosed with APS! After years of going thru hell on earth at the ripe old age of 62, I finally have the answers! I also have another very rare Bliod Didease called POLYCYTHEMIA VERA! Also thick blood and too much of it! This diagnosis came with much pain and suffering! I lost my left leg due to APS & 2incompetent doctors that at Christmastime they were too busy to send me to hospital with 5 purple toe and a blockage! At this point in my life I'd like to help anyone who asks! I've been on 60mgs of cymbalta since the passing of my only child Jesse age 24! You're on 30 msgs! That's a low dose! The 60 will help more, in my opinion! I'm nota Doctor! Please let me know how u r doing! I'm learning very much from this website! I was told from my past medical history that I've had this most of my life! I now must move on and get rid of the ANGER towards the medical profession! At this point there's nothing I can do, but try to help others! From Wat Mary says the med profession is starting to GET IT! About time! I pray each night for all of us with this dreadful disease! GODSPEED!!!

[AngelinaN]

Thank you all for such great advice...

I am being referred to a pain management clinic so I will make sure I push for alternative to meds. Will stick with my anti coag till January and then ask ref asprin alone.

you have all given me great advice - I think I will ask to go to fibro clinic and discuss alternative to pregabalin, I have gone from 10st 4lb at 5feet 7inch to 14st 7lb - its killing me and my walking is hard enough after 2 dvts

your are great support - thank you so much

Angie