In limbo

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In limbo

Postby Kriistiee » Thu Dec 17, 2015 3:30 am

Hello everybody,

About two months ago, after visiting the doctor for nearly 4 years, I was told I may have fibromyalgia. I had several blood tests and only last week did I get the results (my Doctors are useless). Basically, each test I had (iron, inflammation ect) came up fine, no issues at all. I have another appointment next week after begging to see my doctor. I am in agony every day, my upper back/neck area is so painful and stiff, I have pains in every joint in my body, this week it's my fingers.

How were you diagnosed? How did you feel? I feel like I must be making it up as blood tests are inconclusive and due to these tests, my partner is unsupportive and doesn't believe there is anything wrong with me. Despite explaining about (potential) fibromyalgia he said "well there's nothing doctors can do so just get on with it".

It feels like a never ending process of not being diagnosed with anything and not being believed. I shouldn't wake up and have a cocktail of pain relief just to walk, not at my age :(

Sorry for the rant, feeling it tonight :(
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Re: In limbo

Postby Sarahjbass » Thu Dec 17, 2015 9:26 am

You certainly aren't on your own Kriistiie. You're story is the same as most people diagnosed with fibro however to make it 'official ' it has to be diagnosed by a hospital consultant. The frustrating fact about fibro is that it's a lifelong illness that ebbs and flows and is usually originally preceded by an episode of persistent chronic pain.

I was only diagnosed this summer yet I've had the symptoms for about 18 years. My last full bought was 10 years ago when I tried to tell my GP that I was feeling low because I was in pain most of the time, but they insisted that I was depressed. I'm currently suffering only my second bought in that time which has seen me off work since September. I am convinced that the only reason I've lasted so long without a bought is down to the fact that I try and exercise every day. I am aware that most people are so unwell that this is not possible.

Something else that has helped is medication, I know this does not appeal to you however most pain teams would encourage you to medicate in order to give the hyper sensitive pain receivers in the brain , a rest. This will then allow you to undertake daily tasks pain free. After a few months free you can then reduce medication until you have another attack of the illness. Again I am aware that for some people this isn't an approach they would consider.

Support of your family is essential and maybe your partner has taken this approach because he doesn't understand your pain. Have you tried printing information out for him to look at ? Or even taking him to doctors appointments with you. Also, ask your GP for a referral to your local pain team and look for a local support group. When I was first diagnosed I was in complete denial. The consultant told me that unless I accepted that I had this and learnt to live with it, I would never move on and get better. At the time I was so cross with her, but now I understand what she meant.
Good luck (( gentle Huggs ))
Last edited by FluppyPuffy on Thu Dec 17, 2015 10:02 am, edited 1 time in total.
Reason: SPlit into smaller, clearer paragraphs for easier reading.
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Re: In limbo

Postby FluppyPuffy » Thu Dec 17, 2015 11:06 am

No need to apologise for letting some of those frustrations out Kriistiee xx It's something most of us need to do at some point along the way, and doing it on here means you're in good company with fellow FibroFolks who understand what you are going thru xx

Being in LimboLand is so frustrating, you don't know how long you will be there or what will be involved in finding your way out. The results from your blood tests are fairly typical of what have come back for others as there currently isn't any test, scan or other process available specifically for FM here. Instead it's done by a process of elimination where conditions which share a similar symptom range with FM are looked for then discounted when no trace can be seen. Generally, when all other options have been ruled out, the FM dx tends to be given.

As to who can give you an FM dx, originally it was down to Hospital Consultants/Specialists to do carry out the process. However, more and more dx's are being made by GPs as they are able to refer you for all the tests, scans, and other pokings and proddings they think necessary in trying to find the answers to the question of what it is that is giving rise to all the symptoms and problems that are affecting you. If the patient has confidence in their GP, then they tend to be happy that they finally have a name for the cause of their various issues.

If someone doesn't feel comfortable with what their GP has said and done tho, a referral to a suitable Specialist/Consultant can be made. Sometimes this is done as a matter of course, such as when a GP suspects FM may be the reason behind symptoms and is looking for confirmation of their provisional dx. It tends to be a Rheumatologist who deals with conditions such as FM, altho in some areas it can be another department that has the speciality/interest in such conditions, such as Neurology.

With you seeming to have little confidence in your GP, you might want to consider asking about a referral to an appropriate person who will be able to give you a definite dx. If your usual GP seems reluctant to do so, you could make an appt with another one and ask again. To see if you are being seen by the most suitable GP for FM, you could also ask if there are any other patients with FM or similar conditions registered with the practice, and if there are, then ask if there is a particular GP that tends to see these patients.

FM doesn't take age into consideration when deciding who is going to be the next member of its club, if it has picked you, no matter how young or old you may be, then you will be the next one to join the ranks unfortunately. Wrt the meds cocktail, if it's something that is needed to get you out of bed and moving around, then go with it and try turning your focus onto what it does to help you rather than whether it is what should or shouldn't be needed. FM affects us all so differently, and we each need to do what makes the difference to ourselves so that we can life with this condition rather than battling against it.

Support can help make a difference when dealing with FM. Sadly tho, it isn't always there. And the lack of it from those that we thought would be with us whatever came along cuts so much deeper than anything else. Whilst it's not quite the same as what you would get from someone who is extremely close to you, there is support and understanding. Support groups, forums, FaceBook pages can all help, it's a case of trying things out to try and find what suits you best. Sometimes, just knowing that there are others with similar experiences can be very powerful.
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Re: In limbo

Postby dragonwarrior » Thu Dec 17, 2015 11:40 am

I know its a hard place to be where you are but you have to try and stay strong. i have just attended a fibro course that was at doncaster royal infirmary. I was told about the spoon theory and it being a good way to explain to loved ones of what we have to deal with in energy terms it helped me understand alot too . here is the link if you want to read it as it may help you and your partner understand better. ... on-theory/
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Re: In limbo

Postby AlisonL » Thu Dec 17, 2015 12:48 pm

Really not a lot to add to to the detailed and wise replies. You DO need to be correctly diagnosed - a referral to a rheumatologist first, and then a pain specialist. Whereabouts do you live - there are some excellent pain management courses around the country.
Have you got the typical fibromyalgia tenderpoints? there's a good diagram at ... points.htm (although I don't agree with some of what else is said there) If you haven't got these tenderpoints, it's possible that your GP has misdiagnosed - fibro seems to becoming somewhat of a catch-all diagnosis for "I don't really understand why you are hurting so much". See a specialist!
While you are waiting for specialist referrals there are some self help measures you can try - not everything works for everyone. Have you got IBS? Reducing inflammation in the gut can lead to reduced inflammation overall. Personally, I found the FODMAP plan very helpful - maybe not one to embark on until after Christmas, as it is very restrictive for the first six weeks. Epsom salt baths can help with the aching - a 5 kilo tub can be ordered on eBay for not that much. Gentle exercise helps, as do a few mindfulness minutes every day. Pace yourself - take restful breaks before you are driven to bed with the pain. Relaxation, gentle exercise, mindfulness exercises and watching a funny or soothing tv show all count as breaks! A lot of people find supplements, especially magnesium, helpful. Don't know much about these, but check out these pages and other forums.
Husbands are tricky. Sounds like yours is in denial - men don't like it when their partners are broken and they can't fix them! Give him a little information and major on possible positive actions. Maybe your GP is to some extent suffering from a similar mindset?
You are not at the end of the road, but starting on a new one. Every best wish for your journey
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Re: In limbo

Postby Kriistiee » Fri Dec 18, 2015 1:56 am

Thankyou everybody for your lovely replies :)

Finding time to relax is difficult as I work full time (day and night shifts) in a often fast paced job (not such much night shift) and I have a 4 year old daughter. I stay awake even after a night shift sometimes just to spend as much time with her as possible because I feel so guilty. My partner doesn't work, that's just the way we did things, he wants to look for work in the new year but at the moment we're 'comfortable'.

About my GP. I was supposed to have a telephone appointment today at 19:00, they rang at 17:30 and I missed it. The voice mail said something along the lines of 'run back if you still need a chat'. Got through to reception 30 minutes later and was told that I didn't have an appointment and the doctor was just going to ring for a general chit-chat at an undisclosed time!! Have no faith in them whatsoever.

Rant over, again haha x
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