Is this Fibromyalgia?

[Jian77]

Hi, I'm new to this & looking for advice. I've been struggling with pain for 4+ months now. GP did loads of blood tests, all negative. I seize up if I don't move. My back & legs seize up when moving from sitting to standing & it takes a while to unlock. If I'm on the floor I have to crawl to somewhere I can lever myself up. I can't lift my new grandson, which is sad. Lifting pots, pans or anything from cupboards is well nigh impossible. Pain is awful at night as my arms & shoulders go into spasm. It's excruciating. Recent visit to different GP basically said I was mobile & I didn't have enough sore touch points. I was made to feel like a fraud. Now getting referred for xrays on shoulder area. I also suffer with IBS & Vestibular Migraines.

Can anyone advise me please? Should I ask for second opinion?

[Cat00]

I would say yes, tender points are no longer considered relevant diagnostic criteria anyway so that GP is out of date. Besides there are athletes with fibro so being mobile doesn't rule you out either, I do a lot of sport. IBS and migraines are also commonly found with Fibromyalgia, I have both although chronic rather than vestibular. If they don't find something else wrong with you they will no doubt revisit a Fibromyalgia diagnosis anyway.

[Jian77 in reply to Cat00]

Thanks for that Cat00. Last night was sheer purgatory, virtually no sleep. I have looked at many sites, which say likewise regarding the tender points. She didn't fill me with confidence.

[Trappedmoth in reply to Jian77]

Jian, have you seen a rheumatologist or other pain specialist? If not, talk to your GP about this.

[Jian77 in reply to Trappedmoth]

Sadly not Trappedmoth. It's a bit of a battle getting GPs to understand the amount of pain & discomfort. Swimming was suggested, which I've returned to. However, the arm movement required is painful, so I've taken to just walking in the pool using less arm movement. I have difficulty getting dressed also which isn't fine, but I get there eventually. All this I've explained to GP over the phone.

[Trappedmoth in reply to Jian77]

Both my current GP and my previous one were excellent and understand the horrible-ness of fibro. You need to find one that is more sympathetic. In any case, you should request an appointment with a rheumatologist.

[Cat00 in reply to Jian77]

I've never found a GP that has filled me with confidence regarding Fibromyalgia although I have found them helpful for others things so there is always hope! Insomnia is the part that I personally battle with the most and has the largest impact on my family so I'm with you there too!

If you are thinking about going to a different GP, which I think would be best, then I would print out some material from a website like the one affiliated with this forum - I think its called Fibromyalgia Action UK but I'm not sure so hopefully a moderator or someone can furnish you with the details, go through the list and work out what you think you have, obviously there may be some confirmation bias but hopefully a better GP could discuss the symptoms with you and see how you get on.

I don't take any medications for my fibro but I think it's still useful to have a diagnosis as it will hopefully take less time to get some help if you find yourself unable to cope later on.

[Hazel_Angelstar Administrator FMA UK Staff in reply to Cat00]

Yes, link to our website is fmauk.org

You can read our patient information booklets at fmauk.org/publications

[Cat00 in reply to Hazel_Angelstar]

You star!

[penny]

Have you ever had any whiplash? This could be as little as falling from a bike/tree as a child or a car accident. (A client got hit in the back of the legs by someone’s shopping trolley and had really bad whiplash.). Perhaps a visit to a person who does Fascial Release may be some help. Good luck.

[Jian77 in reply to penny]

Yes I was in a car accident 25 years ago, but injuries were confined to my lower back & have bothered me ever since. However, the pain I have now is upper arms & legs, shoulders back of neck/head and down upper part of spine. These pains suddenly came on 4 months ago.

[penny in reply to Jian77]

Everything is linked. Injury to one part impacts every part. Our bodies are very good at adapting but there usually comes a time when they say ‘enough is enough’.

When I have treated someone for a displaced pelvis they tend to fall over afterwards as their body has adapted to being out of line and is unused to everything now being in balance.

If you watch a film of a crash dummy you will see the entirety of the dummy being affected.

[LPASQUILL in reply to penny]

It's funny that I was in an accident in August 98 and was off work for 4 months with really bad whiplash had physio and acupuncture I never thought about it till now.

[penny in reply to LPASQUILL]

I can recommend Body Realignment.

I treated someone who was due to have surgery for whiplash; completely unnecessary surgery. After Body Realignment for their whiplash they were fine. (I was training at the time and it was a stroke of luck that she became one of my ‘cases’ before subjecting herself to surgery.). Treating whiplash with Body Realignment is very curious as, when supporting the client’s head, the head and neck repeat the motions of the trauma and can move very fast backwards and forwards. One would have thought that this would be painful but quite the opposite because nothing is forced, the movements are all involuntary. It always amazes me.

[LPASQUILL in reply to penny]

I have never heard about it but wil look into it thank you

[E8L8dh]

Hi Jian77, Like you I also had difficulty getting a diagnosis. The pain started when I was 14 I’m now 65 and it was just luck that I was seen by a young doctor in 2017 and he got me on to the proper treatment. Apart from the Fibro, IBS and other ailments I have also been diagnosed with osteoarthritis. Since I started taking 2 x 400mgs capsules of Turmeric daily for this I’ve found the pain of the fibro has not been as bad. Also a glass of pineapple juice at night. For IBS if you cut out fizzy drinks, citrus and spicy foods this also helps. I hope this helps and you manage to get a diagnosis and receive the proper treatment.

[Jian77]

Thought I'd add an update. Different GP has now prescribed low dose Amitriptyline, in the hope it will help with the overnight pain. Physio is going to give me more exercises to help, though I won't hold my breath on that. Still to get xray on arms/shoulders, whenever that comes through. Fingers crossed Amitriptyline does the trick. 🤞As for the IBS I've been taking acidophilus which has calmed it down considerably.

[LPASQUILL]

Hi jian77 please keep on at your gp ask to see rheumatology as they do the diagnosis of fibromyalgia your touch points you mentioned I was the same on my 1st check up but as time went on I did get it as all my joints started I have found a weighted blanket is helping at night time also can you not get a muscle relaxent from your gp to help with your spasms but please keep on St your gp as it is a invisible illness its hard to get that diagnosis and you won't be the 1st to feel like a fraud i think we have all been there at 1 time or another.

[Jian77 in reply to LPASQUILL]

Thanks LPASQUILL. I've to wait until I get xrays before they will take it further. Today I've to see physio again as she wants to check I don't have a trapped nerve in my neck. Apparently xray list isn't too long, but doubt I'll be seen this side of 2022.

[LPASQUILL]

Oh I no yea it's hard though waiting for the diagnosis I waited about 3 yrs in total and then nothing changes as if you get different pain they put it all down to the fibro hope you get sorted soon