New diagnosis

[Natj]

Hi everyone.

I'm new here, and this is my first post.

So I have just recently been diagnosed with fibromyalgia, although I've been suffering for the last 2 years of symptoms.

I am however having some issues with my GP, and as this is all new to me I thought I would seek your advice.

Now I'm 30 years old and pre illness very active / gym 4x a week / full time work and I ran a small business.

The last 6 months have been the worst I've ever experienced. I am currently signed off work (6 weeks) , but I'm struggling to get any support from my doctor.

I also have anaemia and as some of the symptoms overlap my doctor has been reluctant to offer any medication to help manage the fibromyalgia.

My current symptoms are as follows :

- Heart palpitations

- Fatigue

- Trouble sleeping

- Unable to concentrate

- Dry mouth

- Nose bleeds

- Rash

- Swollen tummy

- Chronic Muscle / joint pain

- Itchy Skin

- Headaches

- Breathlessness

- Physically hear joints click / grind

Basically the pain itself is constant, it's affecting my whole body and I'm really at the end of my tether and don't know where to turn / what to try / ask doc for.

There's not a day that goes by that it doesn't cause me to cry, either through physical pain or mental frustration.

My main question is what medication / alternative therapy / natural remedies has anyone had success with to take the edge of the pain.

[SnazzyD]

Hello there, How have they ruled out other conditions?

[Natj in reply to SnazzyD]

So the fibromyalgia diagnosis came from a rheumatologist. He completed blood checks also to test for arthritis and other issues and diagnosed fibromyalgia after receiving the bloodwork back.

The only medication I take is for my anemia and that is reviewed every 3 months.

[SnazzyD in reply to Natj]

So the GP says no meds for Fibro because some of the symptoms overlap with anaemia, is your haemoglobin still low? Have they checked vitamin B12, and while they are at it, vitamin D?

[Natj in reply to SnazzyD]

Yeah so my levels are currently sitting at 3 (I'm in the UK, so not sure what the measurement is)

Other tests were okay, although I was also low on vit D.

To be honest it basically just feels like I've been overlooked by my GP. I appreciate that they are busy, but I can't continue trying to live with this consistant pain.

But yes basically the reason I was given for no medication was they wanted to improve my iron levels first and the review it in three months time.

My problem is I can't go another 3 months in this much pain.

[SnazzyD in reply to Natj]

So are they supplementing vitamin D if you are deficient? They should be. When you say levels are 3, which do you mean? CRP perhaps??

So what is the physio thinking they are treating?

Can you see another GP? You need to push for information I think so that they are telling you exactly what they are testing for and why.

Sometimes we need to advocate for ourselves which I know is hard when one is feeling dire.

[desquinn Partner Volunteer FMAUK Trustee]

some of your symptoms would not automatically be put down to fibro and would hope the GP would progress them to see what they may be related to:

# Heart palpitations

# Nose bleeds

# Breathlessness

-

- Rash

- Swollen tummy

- Physically hear joints click / grind

- Dry mouth

These would either be worth investigation or are not fibro. The first three could be your anaemia. But you should talk to your GP about your quality of life and that you need something to help with the pain.

[SnazzyD in reply to desquinn]

I agree, it all seems to be a bit half baked.

[Natj]

Yes sorry I probably haven't explained myself very well.

So all of my symptoms have been put down to my anemia and also (newly diagnosed) fibromyalgia.

I have been tested for sticky blood syndrome and arthritis, of which I have neither.

My GP has advise dthat some of my symptoms will get better once my iron levels come up (which I appreciate)

But I have explained to her its the constant joint / body pain in my whole body that is unbearable. She still advised she would like to wait till my iron levels were higher before further medication

[JOULES12345]

I m on amitriptaline and duloxitine..plus naproxen for pain..ask to be referred to a rumatologise.PACE YOURSELF...Have naps and as much sleep as you can gett❤Ask anything..

[JayCeon]

Hi Natj, good answers already, but I'll have another look at the pain aspect which is your focus, even while waiting for iron to improve your anemia. You're also asking for meds, but I think pain and life management comes first, esp. as your doc is reluctant atm.

I'll re-group your symptoms like this

A: muscle/joints pain, joints clicking/grinding.

B. sleep / fog / fatigue / breathlessness,

C. dry mouth, rash, itchy skin.

D. tummy.

Starting at the bottom, least priority:

D. Check for IBS or stomach hyperacidity: try analyzing for food-triggers and eliminate. Psyllium for constipation and/or diarrhea. Bentonite & almonds for acid.

C.&D-connection. Oversensitivity of inner and outer skins, if you have more, e.g. bladder, esophagus: MCAS? But'd still leave you focusing each symptom alone.

C. Dryness & oversensitivity: like D trigger elimination (or in the case of water: minimization). GC dry mouth gel for mouth. Good cream for skin, or in my case that doesn't work, just reducing water contact. (Soy or almond milk improves my bladder.)

B. Pacing! Sleep hygiene! Trigger hunting. Exercises, gentle and short: pacing, sweet spots, starting small, increasing in baby steps. Supps: My personal faves are passiflora and GABA (amino acid), also well-known is CoQ10 for sleep/relaxation, as well as for fog/alertness, for that also good magnesiums (malate & glycinate to not increase tummy problems), for energy/fatigue also L-carnitine (or ALC more for fog, but not together).

A. Pacing for the Ache! Good gentle PT, expert or youtube for local pains - exercising, acupressure, massage gadgets. Clicking/grinding: scans to make sure it's not dangerous. Supps: Magnesium malate, Ω3, CoQ10, for me: again GABA. These supps are selected according to medical evidence more than experiences I've read, plus my own trials.

0. If mental and/or physical pain is causing you to cry that often, then I'd definitely suggest pain management, CBT and/or ACT, relaxation (many sorts, e.g. youtube), mindfulness etc. It might be a healthy grieving process you have to go thru before you can "radically accept" and then build up again from there.