New to Fibro..

[Alizah]

After hard long 3months GP has diagnosed me with fibromyalgia. This invisible condition for others- that's the hardest part! Been suffering from burning pain in Thighs, legs bottom of feet, lower back and sometimes in palms. Along this extreme fatigue which lead to anxiety/panic attacks, insomnia and bed ridden. Felt was left on my own due to pandemic restrictions done my own research found this platform. Just trying to figure which meds will work so I can get mobile again and what to learn how to mange At the moment on pregablin 75mg 2 Xday. Moved from Paracetamol to Co codomol. Not much difference. Dreading this journey but hoping to find a light at the end of the tunnel.

[CM1EDSUK]

Hi Alizah,

As everyone's different, as far as chronic pain goes, it's sometimes finding that combination of things that might work.

I don't have fibromyalgia, rather the hypermobile type of a genetic disorder called Ehlers-Danlos Syndrome, the pain of which has been most likened to fibro. I also have neurological problems with subsequent burning pain, so you definitely have my sympathy.

I take Pregabalin, which just takes the edge off, use daily gentle exercise & stretches, a breathing exercise, CBD drops, distraction, & mindfulness, for example.

Here’s a link to the breathing exercise, which is diaphragmatic/abdominal breathing, which helps reduce stress & pain: guysandstthomas.nhs.uk/reso...

Also some resources from the Physiotherapy Pain Association, which I hope you may find helpful: ppa.csp.org.uk/content/link...

[Alizah in reply to CM1EDSUK]

Hiya, thanks so much for sharing links. From chronic fatigue syndrome to disfunctional limb disorder and now fibromyalgia. These past few months been such a struggle from a fit healthy person to a person half crippled thought that was the end. But I'm positive I can find support and reassurance here. Thanks so much.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

[Alizah in reply to Hazel_Angelstar]

Thank you

[Canbedone]

Alizah, You found a good landing place - it is friendly and helpful here.

Invisible - yes and if you seem tired or a little grumpy people make judgements so it is best to tell people about you condition and what that means because most have only "heard" of it.

For muscle pain relief I found anti-inflammatories were best. Taken orally Naproxen worked for me but you have to be very careful about mixing that with other drugs. For instance decongestants with Naproxen caused me very serious heart Arrhythmia. Naproxen feels a little brutal when you first take it but you get used to it. Cocodomol always seems like a last resort to me and I have heard of too many people becoming detached and dysfunctional on such a strong and addictive drug.

Ibuprofen gel or Voltarol (Diclofenac) or both very good ectopic treatments that can be rubbed into the painful areas

When you have lumps in the instep that is sometime called Plantar Fasciitis and is cripplingly painful especially when it get to under the heel. I found that Voltarol was best. When numbed, rub the swelling frequently to help remove the pea size lumps. Hot baths help to relive the tension. Make a foam insert to go under you instep in your shoe to support and warm the arch - then walking on it improves the problem.

Fatigue: get you thyroid levels checked - even a small slumps can make you tired.

Liver and kidney functions can be affected and that has a lot of consequences. Take a multimineral and vitamin tablet daily - it cant harm you. Keep up your vitamin D in the winter. Increase fruit and veg, decrease fat intake - improving your bowel will help symptoms. It did for me anyway.

If you find painful swelling then massage them with some oil on your hands. Massage frequently not too hard. Most lumps will disperse and the pain will ease.

Try and stay moderately active - exercise helps - avoid sitting or laying still for long periods - muscles stiffen and atrophy. Limit exercise - don't ever push too hard because it can induce multi-day exhaustion.

Plenty of blood tests are need to see what you syndrome is doing to you - it varies person to person and for the same person over time. The condition is cyclic and subject to flares. Hopefully you gain some periodic remission. I found a link to Vitamin D deficiency and would slip into a flare as soon as the summer sun weakened. Now I take Vitamin D all year round and increase the dose if I feel a hint of a flare.

Good luck and best wishes to you - keep talking - it helps

[Alizah in reply to Canbedone]

Thanks for the advice, all tests are negative GP can only rule out fibromyalgia. Was baffled as I thought I had a defiency or thyroid problems. Having never heard of fibro felt alone and very scared. Worst part is not understanding why feeing so unwell. these pains are awful. And the fatigue Omg! Not to mention the paplations. Just freaked me out. Now I just want to find the right balance of medication so I can control and manage it well. I'm so glad I found this place. One thing sure I won't feel alone here. Thanks

[Hereward_68]

Three months is an express diagnosis 😁.

There are always plenty of people here who will steer you in the right direction.

[Yassytina FMA UK Volunteer]

Morning, yes hopefully you will find some light at the end of the tunnel, trial and error until we find a combination of things that will at least help the horrid aches and pains. I take duloxtene for anxiety and is also prescribed for fibro sufferers as well, codiene some day s if pain is high(although I’m not allowed to use it constantly). My fibro body can be good some days and then I wake up and it’s either a very slow day with lots of pacing, or even odd days it a complete bed day and I tend to kick in again. Just getting the balance right for you, hard if people work to pace , I’m not working due to this. I try not too look back and hard as it is take each day knowing life is slightly different now, you will find some great people here to chat with , ive been on the forum 4 years , you actually don’t feel so alone and good to pop on sometimes for a chat , read posts of interest xx

[Sisook]

since I got this bloody illness, just noticed any condition in any body has diffrent reaction. amitriptilin goes my blood pressure high and makes me sever headache as I was in hospital last night for this reaction (upper bp 185 and lower 110 ). It was extra pressure for my body , the medicin not only help me but also kick my health out more than before. It affects any single moment in my life . this is not only with amitriptin also gabapentin and dulaxetin , morphin , co-codamol & so on. theses are narcotic drug and For long time consume, they just make more pressure for the brain and distroyed the brain cells too pluse addicted. At the end we just kill ourself by drugs and disagreeable effects because these are not right medicins for fibro, just give order to brain to be quiet and block the pain by stop any signal. My advise is try to be patient first, do some exercises and meditation,change the routin foods and just mild painkiller at the end. that's my experience after 7 years struggling with fibro. Think even the doctors just wanted to shut up me with prescribed hundreds type of medicin like mouse lab😞

[athenadark]

I'm an old hand, anti inflammatory seem to work best for me but on bad days I mix them with paracetamol in two hour increments (a trick recced by the dentist), which keeps the codeine for really bad days. I take 300mg gabapentin 3 times a day so my pain tolerance is well and truly shot.

As advice try to keep mobile within reason, your limits will change day to day, walking works well for me, some days it's a few miles some it's a few hundred meters it's easy to not but it's the worst you can do. Even a little helps