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Thyroid UK
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Right dose of Gabapentin for fibre myalgia

Hello. I haven't posted for sometime as been waiting for results from second opinion. Seems mostly normal apart from subclinical hyperthyroidism.

The dizziness has now stopped but in a lot of pain. My rheumatologist thinks might have fibre myalgia or oespeopratic fractures. At the moment my GP is experimenting with different pain killers and I was wondering if anyone has fibre myalgia and is taking Gabapentin. I've just increased the dose to 600mg per day. If anyone can tell me what dose works for them it would be extremely helpful as at some point I have to decide whether they're working or not and want to give them a fair go. Thanks

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A doctor's idea of sub-clinical hypo isn't always sub-clinical at all. I wouldn't just take his word for it. Why don't you post your results here, and let's have a look?

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Thanks Greygoose. The problem is he didn't give me the ranges. This is what he gave me:-

Plasma ACTH 9 ng/l (normal)

Plasma metanephrines normal

Renin <0.10 nmol/l/h (low)

Plasma adolzterone 65 pmol/l (normal)

FSH 72 mU/l

LH 25 mU/l

Prolactin 162 mU/l (normal)

Cortisol 143 nmol/l (normal)

Free T3 4.5 pmol/l (normal)

Free T4 12.2 pmol/l

TSH 0.22 mU/l

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Oh dear. Results are meaningless without the ranges. Your TSH is low, but would be within most ranges. I do hate this sub-clinical nonsense! If the ranges are like the usual ones we see, then your FT4 is low, and your FT3 is just under mid-range. But that is just a guess. I certainly wouldn't call it any sort of hyperthyroidism. But, doctors seem as keen to diagnose people with hyper as they are keen not to diagnose them with hypo! Strange old world.

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If I were a cynic (perish the thought!) I'd say he deliberately didn't give you the ranges so that you couldn't see what a rubbish 'diagnosis' subclinical hyper was!

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You're probably right. I've been ill for 16 months, most of the time quite seriously ill and nobody seems to have a clue what is wrong with me. I've seen 18 consultants who mainly just pass me on so I don't have much faith in any of them. The first endo was a waste of space. The second one, who is a professor, at least did more tests and felt my thyroid and said it is enlarged and arraned for me to have a DEXA scan. Something which my rheumatologist forgot to do. When I next go to see him in May I will ask him for the ranges.

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Good. And ask him to test your antibodies, too. :)

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Will do thanks. I thought he was going to do that last time!

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I'm going to see my immunologist next. She said I didn't have any immunity to pneumonia or tetanus so I will ask her if she tested for these antibodies, just on the off chance that she did. Otherwise considering getting done privately.

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Well, the antibodies I had in mind were Hashi's antibodies - TPO antibodies - which have nothing to do with pneumonia or tetanus. And they very rarely test them without being bullied. So, I would say she didn't, no. :)

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Yes, I know its a long shot but as my appointment is only 2 weeks away I may as well ask the question while I'm there. I will make a note of the specific antibodies to take with me.

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Well, you certainly should ask for them to be tested.

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I'd say coming down off a Hashi flare now with low free T4, but TSH not risen yet OR secondary/central hypo when TSH will never rise. Definitely not hyper - but you need ranges to be sure.

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Thanks Angel of the North. Hope to get ranges soon. The endo posted them too me so wasn't able to question them.

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On what basis does the Rheumy think you might have osteoporotic fractures? Have you had a DEXA scan? If not, then perhaps ask for one to exclude osteoporosis. It would help to know one way or the other in order to manage the symptoms.

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Thanks Nanaedake. In Jan 17 I had a CT scan which showed a moderate closed T12 wedge fracture. Based on that and looking at my back she felt I might have osteoporosis and osteoporotic fractures. She also said I had osteoporotic nodules by looking at my hands and toes. She gave me D3, calcium and alledronic acid tablets but can't take them. I'm waiting for the results of my DEXA scan. I haven't seen her for months and in the meantime I've been in a lot of pain now for 15 months. Codein has started upsetting my stomach, my endo suggested pain patches but they didn't work so my GP is trying me with Gabapentin to see if it is neoropathic. 3 consultants have suggested fibromyalgia and osteoporosis. I'm due to see the reumy at end of April.

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It sounds like the results of your DEXA scan will help to clarify the situation. Osteoporosis itself isn't meant to cause pain but fractures do. You could get advice from Healthunlocked bone health Forum.

Do you find hot and cold applied to painful areas helps? I use wheatbags. Also had tens machine suggested. What about acupuncture and hypnotherapy?

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I find a hot water bottle helps but cold makes it worse. Thanks for the other suggestions I will look into them.

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I've ordered a tens machine will let you know how it goes.

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The bisphonates make you more likely to have fractures (and more serious ones when they happen) as they cause dense, brittle bones, so best not to take them. With D3 you vit K2 (MK-7) to get the calcium into you bones, plus magnesium - you rarely need extra calcium.

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Thanks for this info. This confirms my suspcions. After reading up on it didn't carry on with it. I also have problems with my teeth and ears but was not asked about them and it says to tell your doctor if you do. All sounded a bit scary and not got a diagnosis yet. I am taking my own D3 and K2 after reading advise on here. The D3 is a higher dose than the ones the doctor gave me. I bought some magnesium tablets but I can't swallow them so using the external spray. Betteryou.

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Magnesium spray is often better. You can also buy magnesium sulphate crystals (from somewhere that does soap making supplies) and use it in the bath or make a body lotion by mixing it with an oil.

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Thanks. My husband does aromatherapy so have the carrier oils. Will try that.

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This is a link of a doctor's archived website. He died through an accident. His patients who had fibromyalgia or Chronic Fatigue were prescribed T3 (liothyronine) which is no longer prescribed in the UK.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

web.archive.org/web/2010103...

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Please be very careful with Gabapentin. My daughter was prescribed this in ever increasing doses until she was up to 1400mg/day for her joint and spinal pain that was diagnosed as rheumatoid arthritis, then fibromyalgia and all stops in between. Each time the dose was increased, she'd be ok for a couple of weeks and then she'd be in crippling pain again. She was getting horrendous side effects and was eventually helped to get off it very gradually and carefully (you can't just stop as you're likely to kill yourself... It's evil stuff!) It took her almost a year to come off it with the side effects continuing all through that time... She was finally referred to a (somewhat older) rheumatologist who took one look at her and the photos she'd taken of her joints during a flare up and finally diagnosed 'classic' lupus! She is now on the right medication and has been given her life back. Her time on Gabapentin was horrendous and I had to watch helplessly as it almost destroyed her and I would certainly recommend going very carefully with it.

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I'm really sorry to hear that but glad that your daughter has got the right medication now. I don't intend to try it for too long but as it is licensed for fybromyalgia in the US I wondered what dose actually works before I give up on it. It does seem to be woking to some extent but not nearly enough. I just want my life back too. I will be particularly careful now I have read this. Thank you.

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Increasing the Gabapentin doesn't seem to be helping so will give it another week and then slowly stop them if no improvement.

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Please sure you get the doctor's help doing this as it has to be managed properly.

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Will do. Thanks for all your advice. Its been very helpful.

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Have you had your Thyroid anti-bodies checked - anti-TPO and Anti-Tg - to rule out hashimotos. Reading your last post of six months ago I see greygoose did ask you if they had been tested. Cannot see any results ? I was diagnosed with Fibro in 2000 and Hashimotos in 2005 .... LOW T3 was my problem as it can be for many with Hashimotos and many other health issues :-)

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Thank Marz.I thought my new endo was going to check my antibodies but seems like he didn't. I will ask him to do them when I go next. I will also look at T3.

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Are you able to have Private Testing through Thyroid UK ? The NHS rarely test the T3 or do both anti-bodies - and so people remain unwell with some other diagnosis .....

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Yes. I am seriously considering having them done privately. My results took a long time to come back to me and I was waiting to see them before going down that route. Thanks.

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thyroiduk.org.uk/tuk/testin...

The link above takes you to the main Thyroid UK website where you can read about the companies offering Private Testing. Sign up for Newsletters so you can be made aware of Special Offers :-)

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Thanks. I will do that and will also ask my immunologist if she did them 10 months ago.

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