Fibromyalgia Action UK
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Can anyone relate?

Hi everyone,

I thought I'd post to see if what I'm experiencing is similar to those of you already diagnosed. I'm waiting on a referral to a rheumatologist for diagnosis.

Around a year ago I started having extra worsening fatigue, muscle weakness mainly in my arms which seemed to be getting worse-around 6 months ago I started developing a lot of stiffness which is also accompanied by sharp shooting pains all throughout my body.

The only way I can describe it is that it's like someone has a 100 throwing knives and is throwing them at all different parts of my body at the same time. It's in my knees and legs, and ankles and also my wrists and hands as well as back, shoulder, neck and chest. The pains come and go but have recently been at an all time high. So much so that I was running a fever and was in so much pain I went to an emergency doctor who advised me to go to A&E as he thought it was due to a severe infection. I was negative for any infection and sent home with painkillers. The pain can be in about 15 places at once all moving around my body as if someone is shocking me? I just feel absolutely dreadful. Everything hurts, I take codeine, have a heatpad and a tens and nothing seems to help. Along with shooting pains I have dull aches. The past few blood tests have been flagged for high crp levels so they keep making me repeat them. I know fibro is different for everyone but is anyone's pain symptoms sound like mine? My gp and A&E doctors can't understand why I have such a high fever and chills all the time with no infection.

Any advice would be great. Really hoping this flare up calms down soon. I'm so anxious waiting for it to get as painful as it did last weekend before I had to go to hospital.

Thanks,

Jordan-Melissa

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Hi Jordan -Melissa. Poor you - it sounds terrible. I've not had it quite so bad but certainly the pains are in the same place, the knife pains sounds familiar and I do run a very sight fever sometimes with no infection when they test for it. I cant imagine codeine will help much but they don't often give you serious pain relief to take home from A&E. Surely your GP can prescribe some better pain relief for you while you wait? It may well turn out to be Fibro but what ever it is you sound like you need some better meds until you get a definite diagnosis. I have also got other symptoms but the pain relief I take is tramadol when its really bad and co - codamol a little more often and loads of warm magnesium baths to stop me tense up. They help me relax and they really do keep the pain under control. Worth a try? I also use an acti patch for some of the nasty pain spots like my knee today! I think another trip to the GP to get some interim pain relief - and other fibro recommended meds maybe. Good luck with this. Annx

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Hi Ann thanks so much for your reply. It's reassuring that I'm not the only person having these issues. With not having a diagnosis yet I feel a bit all over the place and I'm just desperate to understand what's going on. The codeine hasn't been helping but that's what they gave me at the hospital. I can't take any anti inflammatories due to asthma and stomach lining issues and I can't take a lot of meds due to some of the other conditions I have. I'll have to try the acti patches. I do have Epsom salt baths too which help slightly whilst im in them. If this is fibro I never knew how painful it could be! I'll be going back to the gp for my recent blood results so hopefully they might be able to suggest something else whilst I'm waiting for my appointment. Sending lots of love and hope you're having a pain free day.

X

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Welcome as I haven't seen you post before. I am glad you are having further investigations as unfortunately Fibromyalgia can have overlapping symptoms with other illnesses and they need to make sure that these are ruled out first.

Many of us say that our thermostats have gone wonky I seem to be either freezing or boiling nothing in between. Any times my fibro feels as though I am going down with flu as I seem to be running a temperature but feel shivery and can ache from head to toe but I know not isn't flu as no chest infection or sore throat.

I too have burning and shooting pains mine are mostly in hands and feet and across my back and down my spine but they have been known to rear their ugly heads in other regions of my body there doesn't seem to be any rhyme or reason mm to them when I am having a flare. The two things that seems to have helped with this are Pregablin (Lyrica) and Lidocaine plasters. When you have a firm diagnosis you could ask to be referred to a Pain Management Clinic.

I don't know whether you have a bath or a shower but sometimes warm water with several handfuls of Epsom salts in can help with the overall pain. Rest as much as you can as if you try and push your body too much when you are like this it seems to escalate the pain. I actually finds freeze gel helps me more than any of the heat rubs. I also see a Chinese medicine/acupuncturist once a month as he has more knowledge about fibro than any of the other medics I have met.

Hope some of the above helps. Look forward to your future posts.x

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Hi Rosewine thanks so much for your reply. I've never posted before but thought I'd see if anyone else can relate. I have a few other chronic conditions but not any that should cause all over body pain so that's why I've been trying to see a specialist- I'm just waiting on an appointment with a rheumatologist. When my gp first suggested fibro I tried not to look into it too much as I didn't want to self diagnose but after doing more research so many of the symptoms I suffer with including brain fog and fever.

That's exactly how I described it at the hospital! It feels like the flu but worse and minus the ear nose and throat issues. I've just been going a bit crazy since the hospital sent me home. I can't understand how I can have so much pain and nothing apparently wrong like infection and such. I do have Epsom salt bath's every now and again and they do help with overall stiffness. I use deep heat rub and a heatpad currently but I will definitely have a look into the Chinese medicine suggestion as I'm willing to try anything to get some relief! Thanks again for the reply and hope you're having a pain free day! Hopefully I'll be able to get a diagnosis soon and a handle on my pain. Lots of love X

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Hi

Your description sounds just like mine although some of my pain is also down to hypermobility. Sorry you are in so much pain and hopefully it will ease soon. I would do as already suggested and go back to gp for some pain relief in the meantime. I take amitriptyline which helps me. Good luck and let us know how you get on?

Gentle hugs x

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Morning hun,

This sounds exactly like how I feel. I tend to describe it as someone is shoving steel rods in my spine and other parts of my body!! I also have base pain which is the dull aching that you seem to be describing! The only thing that I can suggest is going back to your doctor and try and sound out the best way to move forward....💗💗

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That certainly sounds all too familiar. I remember the first time I felt the'knives' I actually tried pulling them out. Bit crazy I know but it felt like they were really sticking into my body.

Good luck with your rhuemy appointment lovie xxx

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I can relate to the temperature problems. Yesterday I was burning up while shivering. On probably the hottest August day for years I was under a winter weight wool duvet...

Pain. Yesterday it was all about my head and neck. Headache from hell that nothing would shift. Paying for it today too in stomach pain from the painkillers. Can't win.

And I often describe the random pains as if someone is stabbing my leg, now my shoulder, oh moved to my arms now. I don't think I get these pains as much as others, they're more annoying and just happen at random times.

I'm in the UK and still waiting for a Rheumatologist appointment, minimum 8 month wait. This is after the last 8 month wait for another specialist who couldn't help ( but was very nice , at least listened & did very thorough tests) I got a diagnosis of fibro by seeing a private Rheumy.

It's a miserable illness, hits you randomly, wherever it feels like it and no one else can see a thing.

Try pain patches and gels like Perskindol might help.

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Welcome I hope you get a diagnosis and soon iv only been on this site a few wks but you should keep posting the people on here are really friendly an so helpful good luck with every thing :0) x

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