Any suggestions to relieve the burning sensations?

[Sueb24]

They're good things you're taking , oh the weird sensation I was referring to, the crawling moving feeling I get in my leg's. They tried me on pregabalin years ago, (I had to stop taking it, it was giving me auditory hallucinations)

Do you just pour the green tea over the fire ants and drown them?!

 

[SBee]

Thanks @Sueb24 I think because the OA/IA/fibro have all hit me in very close timing I'm a bit overwhelmed with all that's going on! After a while I stopped worrying about what symptom/pain came from what condition, but recently I have been trying to work it out purely from a possible medication viewpoint.
As some of my worse points for pain and stiffness is in fingers hands and wrists I finally had someone decipher the rheumatologist letter and it seems that part of my body is both inflammatory arthritis and osteoarthritis. There's already a fair both of damage in both hands so am hoping the methotrexate will at least slow progression, and lowering the inflammation a happy bonus. Early days, and alternatives out therefore need be.

Someone I know had biologics introduced along side the mtx and also said it's a game changer.

Yes, here in SE the fibromyalgia is pretty much seen as using anti depressants and lifestyle changes, up to us to deal with it . Because of that I fear they have little or no idea as to how debilitating it can be.

Thanks

 

[Auriel]

Hi @Moose welcome to our forum , hope you find it a good and helpfull place to be (it's always nice to have new people join that can understand what this is like) how do you find the side effects of the gabapentin that you take? (I find mine to cause me to slur my word's a bit and make me incredibly drowsy)

 

[Sueb24]

SueB Have they suggested sulphasalazine for the RA as yet? It is supposed to also slow the RA progress. I take it alongside the biologics.

 

[SBee]

Early days for me @Sueb24 only began my mtx injections for the first-time this week - but I am storing up advice like yours in case I need alternatives in the future.
I know with biologics they prefer us to try single meds at first before a person becomes ' eligible ' to have the biologic alongside.
Am willing to give the methotrexate a good try to see if I'm luck and get it right first time

 

[sunkacola]

She just said it was neuropathy

hmmm. That's not very helpful, is it.
I don't know if what I experience is the same as yours, but I do occasionally have the feeling of little electric shocks, or ant bites and crawling feeling in my legs. It's enough to make a person feel sort of crazy.
What has helped me with that is using a TENS machine. Don't know if it would work for you, since everyone is so different, but might be worth a try.

 

[Auriel]

Do you have a lot of injections @SBee (Are they very painful?), ps if I'm asking too many question or crossing questions line's please let me know

 

[SBee]

Hiya lovely @Auriel () Oh, just ask away. I'll answer almost anything! You never know if any reply might help someone else.

I am just on one injection once a week, it's more like an Epi-pen, so very easy to use. Doesn't hurt, , just stings a bit. Side affects are a bit bleurgh, nausea, headaches and the worst for me, even more fatigue. Like I needed that added on to the chronic fatigue ..

It's for the inflammatory arthritis to help reduce inflammation and slow the progress of the arthritis.

I didn't want to take tablets as I have IBS and a hiatus hernia and as gastric problems are a pretty common side effect I was stressing they would complicate things and set the fibro off worse. Then The spiral effect begins again. The jabs help minimise this ( I hope ) and folic acid tablets should help with side effects too.

Lots of blood tests to check its not messing other stuff up. Bit scary at first but I guess it becomes routine. All meds have side effects but I think it's weighing things up to try to get achievable benefits.

 

[Sueb24]

hmmm. That's not very helpful, is it.
I don't know if what I experience is the same as yours, but I do occasionally have the feeling of little electric shocks, or ant bites and crawling feeling in my legs. It's enough to make a person feel sort of crazy.
What has helped me with that is using a TENS machine. Don't know if it would work for you, since everyone is so different, but might be worth a try.

My neuropathic pain is more constant & definitely a burning sensation (worse on waking from a deep sleep as mentioned previously) . When I had ME (20+ years ago) I got the ‘crawling ants’ sensations. I think they are called formications after Formica acid produced by ants. No electric shocks as yet here.

 

[Sueb24]

I think because the OA/IA/fibro have all hit me in very close timing I'm a bit overwhelmed with all that's going on!

My RA came on in the middle of the M.E. As they are all now thought to be autoimmune problems it’s not really surprising. I think personally (I’m not a medical person but I am a biologist) that fibro is a variety of M.E. but with pain as the predominant system. M.E. is more the fatigue. I felt as if I’d been poisoned with M.E.

A question: did you have any problems having the Covid vaccine with fibro? I didn’t but that was probably because I was in remission at the time. I need a Covid jab now but I keep putting it off for fear of how my body will react at present.

 

[SBee]

Hiya @Sueb24 I fully understand the link and timing of ME and that triggering the fibromyalgia as it appears to have been for you. For me, I honestly believe both the fibromyalgia and inflammatory arthritis were triggered when my perimenopause symptoms ( most severely for me the mental health side).
Fibro and RA or similar, can both be known to kick off at times of stress and other health upheaveals.

But with your covid question, the timings for me didn't really coincide. Although peri had started slowly, that's when covid was at its worse, so I had the ' usual ' 2 ( or 3? ) vaccinations as did most people. At that time I was not in a higher risk category as fibr o or RA had not affected me at that point, so had no further covid jabs since.

But now I have the inflammatory arthritis your covid and flu jabs question will now be relevant for me too. Actually I have been looking at the NRAS ( national rheumatoid arthritis society ) and others on the forum are asking the same thing - does a covid vaccination set off a fibro or RA flare ? Unfortunately for some it appears it does. Probably not what you want to hear.

It's something I have so far been putting off thinking about myself. I think I will need to be sensible and take the vaccinations at some point, but I am very wary of any consequences as are you.

 

[Mary Alice Long]

They're good things you're taking , oh the weird sensation I was referring to, the crawling moving feeling I get in my leg's. They tried me on pregabalin years ago, (I had to stop taking it, it was giving me auditory hallucinations)

Please request to have an overnight in-lab sleep study done. I had one done a couple of weeks ago, and am waiting on the complete interpretation of it. From preliminary report, looks like I'm getting only 55-60% sleep efficiency, due to restless leg syndrome (which I've had for decades) and possible periodic leg movement disorder. My decades-long "fibromyalgia" diagnosis may well be a mis-diagnosis.
Hopefully they can prescribe a dopamine agonist to relieve the symptoms. (I also had negative response to GABA and Neurontin.)

 

[Mary Alice Long]

Thank you Mary. It will be interesting to know what the tests reveal. I was diagnosed in 2006 after 8 years of ME between 1992 & 2000.

When he diagnosed the fibromyalgia I remember the consultant saying that ME & fibromyalgia were at opposite ends of a continumn and that they merged somewhere towards the middle with a lot of overlap. Now that both conditions are being considered as autoimmune diseases I am hopeful that treatment will eventually be as good as they now have for conditions such as Rheumatoid Arthritis (which I also have).

I too have had long periods of remission from the fibro when I’ve almost felt ‘normal’. I wonder if it’s that as we get older everything takes longer to recover from generally? My consultant also told me that with the RA I had a very high pain threshold as others would have been screaming in pain when I was ‘coping’. This fibro episode has almost had me screaming

I have been anticipating a diagnosis of hyperparathyroidism (this disease includes all the symptoms of fibro.) Initial blood work didn't confirm this, although my blood calcium was elevated; the dr. is going to repeat the same tests every 4 months for a year to see if a pattern develops. Also, I highly recommend you request an overnight in-lab sleep study; I had one done and am waiting for the final interpretive results. The initial report said I have only a 55-60% sleep efficiency (normal being 85%). This is caused by restless leg syndrome and possible periodic limb movement disorder. Hopefully they will diagnose and prescribe dopamine agonists to relieve the symptoms.
(This is the most "hellish" condition....my prayers are with you - that you find relief and peace.)

 

[Auriel]

I would love a sleep study done (it's quite challenging for me to get my gps to do anything these days) the only thing I can think is to see a private gp and ask them to put in a request? I've not seen your name before, so I'm gonna welcome you to our forum

 

[Moose]

I’ve been through the whole gammet of diets, acupuncture, vitamins, wholistic doctor… I was misdiagnosed with MS in the 90’s and it’s been a journey since as I suspect for most. I only take meds when I discover they help outweighing the possible side effects. I did the 30 day autoimmune diet by Amy Meyer- it was definitely helpful with energy. I have Hashimoto’s thyroid disease also.