Feeling awful.

[Mandypandy1969]

I feel so tired/fatigued. soreness all over my back down to my waist. It's like a sunburn prickly feeling. Had to remove my bra. I feel so fed up and useless. Aching and feel so weak. I am on gabapentin which I thought was for the soreness feeling which I assume are the nerve endings. My immflamation rate is high at 72 and sjogrens lip biopsy came back inconclusive and been put back on steroids for two months to see if they help. That's a yes and no. I feel so low as I know something else other than Fibromialgia is going on due to immflamation rate which I have been told has nothing to do with fibromialgia.nwish I had a partner to give me some hugs. Sorry for being morbid. X

[YASMINTINA FMA UK Volunteer]

Hi there Mandy I’m sending a hug to you , it’s pretty rotten having these symtoms all together, I do know how you feel I had a flare day yesterday laid up and not being able to do anything, did manage teatime to have a bath gettin loose fitting nightie got back into bed watched a couple of good dramas and hoped today would be better. Have you a friend that can pop over for a cuppa ?? Or family member, sometimes we just need that little extra support to see us through. See if you feel any better with the steroids , I did try gapapentin it didn’t suit me then eventually Was put on a duloxtene tab one a day it’s supposed to help with fibro and anxiety which I had , but has differently helped me . Think we all try different meds hoping something will at least help our symtoms . Take care xx

[Mandypandy1969 in reply to YASMINTINA]

Steroids helped a little but after tapering to 10 mg then 5 mg, everything back with a vengeance and I am very low and tearful. gabapentin have dine nothing. xx

[honeybug in reply to YASMINTINA]

Such empathy Yasmintina

😊🌸🌿🦋

I’m sorry you’ve been flaring. I hope you’re doing better.

Squidgy hugs 🤗 love 💗 and kisses 😘.

EJ. 😊🌸🌿🦋🙏

[Mandypandy1969 in reply to YASMINTINA]

I forgot to say, my rheumatologist has said if steroids help that he would be putting me on mycophenolate. It's inconclusive about sjogrens after the lip biopsy I had. so frustrating not knowing what the immflamation is in my body. xx

[honeybug]

Sooo sorry sweetie.

I’m sending you cyber hugs 🤗 love 💗 and kisses 😘.

😊🌸🌿🦋🤗💗😘🙏

[Mandypandy1969 in reply to honeybug]

Thankyou. Do you get this burning on your back? sending hugs to you too. xx

[honeybug in reply to Mandypandy1969]

Welcome. Yes I get burning everywhere. I have neuropathy and inherited Erythromelalgia Sjögrens Scoliosis neck/thoracic sciatica demyelination disease EDS Raynauds Phenomenon arthritis and a mound of other conditions and most of them produce burning in my back and elsewhere. The only thing I’m on is Gabapentin 2400mg daily. I can still increase the amount if needed.

It turns down the worst burning to a constant but tolerable level.

Tell me about your experience.

Xxx 😊🌸🌿🦋🤗💗😘🙏

[Mandypandy1969 in reply to honeybug]

Gabapentin isn't doing anything to be honest. I have the burning nearly everyday. it goes into my arms, legs, face, eyelids and forehead but mainly my back. my skin feels hot and prickly with the burning. xx

[honeybug in reply to Mandypandy1969]

Mmm... my response disappeared before I finished it.

I’m sooo sorry to hear that you’re symptoms are your limbs and back but I’m the most sorry for your face.

Does your skin turn lobster red in color and feel swollen too ???

I get these symptoms with fiery hot pin needles skewers dagger stabbing pains everywhere too.

Maybe you have this too or a form of it.

Xxx EJ 😊🌸🌿🦋🤗💗😘🙏

When it involves my head it affects my breathing and I pray for death to claim me to stop the pain. These symptoms belong to Erythromelalgia. I am 1 if only 3 globally diagnosed with this rarest form of it where it also is triggered by salt intake too. It was diagnosed by DNA blood testing and was double tested to confirm with multiple colleagues. That took 8 months total.

[Mandypandy1969 in reply to honeybug]

Blimey. no, don't go red but just feels a bit tender, odd feeling. xx

[honeybug in reply to Mandypandy1969]

I’m so happy for you that you don’t have my symptoms too dear. Xxx

[Roselil in reply to Mandypandy1969]

Yes, I also get a burning pain everywhere. It seems to be a major symptom with Fibro. Hope you can find a less harmful alternative to Gabapentin. Do consider taking Turmeric, and B.12 Vitamin, and some Magnesium. Hope you get some relief soon. Love Roselil

[Mandypandy1969 in reply to Roselil]

Thankyou. lose the will to live at times as get so low and frustrated. xx

[rosewine]

You have my sympathy as that is why I can't wear a bra to be honest some days even a vest hurts. I am just coming out of a flare and found I couldn't lean back properly on a chair as the tender burning feeling in my back was unbearable. I'm sending you a virtual hug and hope the pain eases soon.x

[Mandypandy1969]

It's awful. just like sunburn feeling. I have a lot of pain down my left side of my back which is hard getting up and down. sending you hugs too. xx

[Roselil]

dear mandypandy, Your description sounds so typical of Fibromyalgia. I am also in a flare and been confined to bed for almost 4 days again. I did not ever take Gabapentin, though prescribed, knowing my reactions are always so bad with drugs, but have taken herbs and natural things instead. I am now on Turmeric, B.12 and recently started taking the medicinal drops of cbd but not long enough to know whether they are helping the pain or not. I am also using a Magnesium lotion on my body. I also have M.E,. and IBS and lots of other add-ons. It is coping one day at a time. You will have some better days, so I wish you more of them. Love Roselil

[Mandypandy1969 in reply to Roselil]

Thankyou for your kind words in your reply. so much appreciated. I want to get off this gabapentin. what's the point if they don't do anything to help? xx

[Lorraine56]

Oh Mandy I'm sending you lots of love and hugs I know what its like I live alone too it is a horrible feeling you are not useless and I am always here for you lots of love Lorraine xxx

[Mandypandy1969 in reply to Lorraine56]

Thankyou. sending you hugs too. I live with my mum and fur baby so I am lucky. they keep me going if you know what I mean. xx

[honeybug]

I’m sorry to hear the gaba isn’t working for you. Have you talked to your doctor /rheumy about meds change? I’m sorry about all the places you get the the prickly burning pain. I get that too but my Erythromelalgia was mostly responsible for the same prickly burning stabbing pain but when it involves my head it is excruciating and it affects my breathing. It’s so bad I pray for death.

I hope you can get relief soon dear. Best wishes.

EJ 😊🌸🌿🦋🤗💗😘🙏

[MsJ1]

Hello MandyPandy

I'm newish here, but just wanted to say I understand some of it, it's very hard having fibro etc and being on your own, no one to give you a hug, just make you a brew etc or even someone just to talk to, that's my upset, just someone to talk to. We have this forum though thank goodness.

Also, I tried gabapentin, it did nothing but it's sister drug pregablin, is helping a little. May be worth asking doc about it?!

Take care of you X

[Mandypandy1969 in reply to MsJ1]

Thank you. I suppose I ought to visit g.p. again and talk to him about meds. xx

[Mandypandy1969 in reply to MsJ1]

I am going to speak to either rheumy nurse or g.p. not sure which one as fed up with going docs all the time. feel I am being a hypochondriac. xx

[cefnonn1]

Sending you big gentle hugs. It's so hard isn't thank goodness for this site. I have had some really low days over the last few weeks which is understandable with everything we put up with. You take care and wishing you better daysxxx

[Mandypandy1969 in reply to cefnonn1]

yes it's very understandable. Gabapentin isn't touching the soreness prickly/sunburn feeling. I was toying with phoning the rheumy nurse as fed up with going to g.p. and he just increasing gabapentin. what's the point. I think I will have a big weight and a lot of stress lifted when I have had tribunal next week for my e.s.a. then waiting on p.i.p. a kind man has done a statement for exceptional circumstances concerning my anger/bipolar unstable personality disorder as I can lose my rag so easy with people and it has happened in the work place in the past. sending you gentle hugs too. we can always talk when we feel down and yes thank God for this site. xx

[Hidden]

Gentle hugs xx. Sorry that’s all I can offer 😔

[Mandypandy1969 in reply to Hidden]

Gentle hugs to you too. Thankyou. xx

[grandmama16]

Hi again....I'm lucky to have a Dr. who understands. I've been on Cymbalta which is duloxetine , 90 mgs. and an opioid combo for so long that I don't know if they are really working well enough but afraid to switch to something else. What is amtripbaline, spelled wrong? I've tried gabapentine but it seemed to cause restlessness. I also take Ambien for sleep. Was pres. Xanax but found out it conflicts. Take other meds. too and kids want me to cut down. Now antibiotic for UTI. I bought a Hemp oil but not sure what to do with it. I might try rubbing in on sore knee. I do take B12, a multi vit, and a Super B. Also CoQ10 for high cholesterol. Might try magnesium rub. Must go...just learned that a friend died...cancer...not unexpected but still sad. M.A. in USA