Questioning diagnosis

[Jan1964]

I've read people talking about flair up and other factors of their FM and I'm questioning whether I really have FM or if it something else.

I have constant pain and there's not flair up because it never gets better. I have increasing lack of coordination of movements in my hand, and have fallen several times when my legs give way. I'm loosing my balance a lot and my hearing is worsening. I'm stiff and swollen every morning and it takes a while and a shower before I can regain any kind of movements. I have to shuffle to the edge of the bed and roll off it, putting weight on my arms to push myself up is unbearable pain! I work full time and spend my days off recovering which makes me frustrated that I don't have a social life because I refuse all invites as I don't have the energy to move and the house work suffers to!

I don't drink as I'm unsteady enough without adding to it. I blamed the Gabapentin and stopped it, to find that I couldn't move at all without it.

My bladder is constantly irritated and have to ignore the it as I often go to the loo with no results despite feeling as if I might wet myself, and loose bowels every morning despite a good diet. I've been checked for diabetes and cancer and they where both negative.

I don't feel I'm taken seriously at the doctors or specialists and I keep being past to another department without an answer or told "it sounds like FM to me".

Does this sound like others experiences or should I keep pushing for further investigation? I know whatever it is, I don't want it and need to find a solution. Help!

[tulips123]

I'm sorry Hun but I can relate to that. None of us experience exactly the same symptoms but mine is similar to yours, plus sometimes cranks up a gear. The Gabapentin is another clue because of the way it works with FM as opposed to other pain killers/conditions. xx

[Fallabella]

Hi jan1964, you sound as though you're quite similar to me except I no longer work as my job was quite physical and it became too much as my mobility worsened.

From what you say you have swelling every morning. I personally don't have that but the stiffness I definitely associate with. The pain too.

I'm no medical expert but there are several similar conditions and sadly you're not guaranteed to have just one of them. I think you're right to keep questioning what your condition/s is/are.

Nobody wants to feel so terrible all the time and I truly feel for you.

Sending you hugs and hope for a final diagnosis xx

[Creativeness1]

Hi Jan1964 so sorry you are struggling so much I tend to agree with both Fallabella and tulips123 some of the symptoms do sound the same and relate to fibro but also other possible conditions.

Irritable bowel syndrome can create a lot of pain and swelling it affects your bowel habits. Urgency incontinence can feel very uncomfortable to going to the loo may feel like you need to go there and then.

Please remember I am not a professional so I am only going on opinions sometimes knees can go making balance difficult. Please check with your GP as they do say to just go off medication is not advisable as this should be done under medical supervision and done slowly as the impact can be very difficult.

There are a lot of different things here an unfortunately it may be that you have a few conditions often these can interact with each other so you feel so confused and frustrated. Please make an appointment with your GP to go through them write everything down and take it with you that way you could ask the doctor to read what you haven't been able to discuss. Ask for a longer appointment as in some cases you can get 20 minuets instead of 10.

Good look my friend

[YASMINTINA FMA UK Volunteer]

I share your frustration it mite b that there is an another condition along side I wish you the best of luck keep plugging at docs I've been diagnosed with sleep apnea and fibromyalgia seeing my doc Monday my daughter like me really feels I've cfs as well wish me luck and take care we r rooting for you xx

[naturalnikki]

Don't worry. I didn't have flair ups at first as it was pretty consistent and seemed to only be getting worse.

I found relief with some natural anti-inflammatory, i didn't test first i just felt like i had inflammation.

Apple Cider Vinegar with mother drinks with raw honey Half a lemon and water has kept me functional. 15ml ACVwith mother 15ml raw honey about 8 ish oz of water. It took about a month to notice my inflammation going down and i starting feeling a little better.

I haven't found anything to make me pain free, but i can do what i need to do as a home keeper and a home schooler.

My mother in law can still out work me, which drives me crazy but i am functional and that is all i can ask for.

Good luck××

[Dizzytwo Moderator]

Hi, I am sorry to hear your not getting the answers you are looking for from your GP/specialists It does sound like fibro but then so do many other health problems. They may be just taking their time to rule out any other illness first. If they can't find any thing then as a rule your left with a Fibro diagnoses.

As for flares. Most people with fibro have pain or some discomfort every day this is not unusual . If your pain for example as always been a 3 on a scale of 1 to 10 but then it feels more like a 9 this could well be a flare up of your fibro symptoms. Some I understand have regular flares some just stay the same. It is a very individual symptom and not everyone suffers in the same way. This is one of the reasons it is very hard to get a quick diagnoses or even one at all in some cases xx

Mo

[TheAuthor]

Hi Jan1964

I am so genuinely sorry to read of your suffering and struggling and, as the others have said, it does sound a great deal like Fibro but we all do have varying symptoms. I was wondering if you have ever had an MRI of your brain just to rule out other medical conditions? I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[Jan1964]

Thank you everyone for your support and replies.

My wonderful partner has booked us a holiday to relax in Egypt. Does anyone know if I need a letter from the doctor to take my medication through customs? I'm on Gabapentin, vit D, HRT, Omeprazole, Naproxen and the doctor wants me to start steroids I go for the chat and prescription on Tuesday.

Thanks again,

Jan xx

[Midori]

I can relate to what you say, as I don't appear to get Flare ups either. I am also managing my pain quite well with Ibuprofen. My pain seems related to effort, for instance after a short time using my rollator my back gets incredibly painful, but it eases with rest. I do have increasing stiffness, and instability, and can only raise myself with great difficulty, but for me it seems more muscle weakness than anything else.

I'm also unconvinced with the IBS as well, as I find that if I avoid certain foodstuffs I can reduce the wind and bloating which results.

Having camped for many years in the New Forest, which has endemic Lyme disease, I'm wondering if I might have Chronic Lyme rather than Fibro, but getting doctors to address anything other than Fibro is a pain in the backside.