Scared of fibro meaning no longer able to work.

Bones, joints and muscles
1

Hi, last week I saw my gp and was told that I had clear signs and symptoms of Fibro, along with osteoarthritis for which she has referred me for xrays to confirm the oste. In the meantime she has placed me on 900mg of Gabapentin and prescribed Feldene gel. She did tell me that I would be on the tablets long term and would need to be weaned off them.

Im scared, terrified more like. A woman I work with has told me that she has a family member who ended up in a wheelchair from fibro, a friend of mine has fibro (and other conditions) and she is in a wheelchair. Neither of them can work - too ill. I absolutely love my job and dread being unable to continue to work due to the 'fog'. Constantly make notes anyway so I remember things work related. When should I tell me employer? After the confirmed diagnosis? But Ive been told that could take some time (months). I am also going to be applying for PIP in the next few days, I will write down that I am awaiting a firm confirmation of the illness. Will also make reference to the fact that I have medical records showing a history of joint and back pains. Before the GP visit I was going to apply for PIP.

Can anyone please help with easing my fear regarding the diagnosis?

2

Hi my cats. First thing to do is breathe! Your GP said you had signs and symptoms but did they do a tender point exam or refer you to a rheumatologist to confirm the diagnosis?

Next you need to talk to your GP about your meds. What does your treatment plan look like? Often times doctors throw a lot of information and scripts at you without discussing it all first. Be your own advocate and ask questions and demand answers. If they can not do that then get another doctor.

As for other people in wheelchairs and unable to work, please know that we are all different. We are on different medications, diets, supplements, physio. What works for one may not work for another. And all of us are at different pain levels and have different symptoms.

Hold off on telling your employer until you have seen a rheumatologist and had your ex rays. You can not inform them of what you need until you know what you're dealing with and how meds and illness are going to effect you.

Many people on here have had fibromyalgia for years and are still working. It depends on your job and the severity of your symptoms and whether or not your boss is understanding with your situation.

Read up on the illnesses and know we are here to listen, give advice or moral support as needed.

Don't forget to breathe!

3

Hi mycats,

                 I too was diagnosed with osteoarthritis and fibromyalgia. At the time I was working as a nurse, but was really struggling with pain and fatigue. Eventually the Occ Health doctor decreed that it was unsafe for both me and my patients, for me to continue nursing. I was offered a temporary ward clerk post, in the small private hospital where I was working. I enjoyed it, although it was fairly stressful, and it was scary dropping to half my previous salary, but like you I claimed Pip at that time. Then my husband was diagnosed with prostate cancer; more stress and worry, and I was signed off sick by my GP. My husband had surgery and recovered, but I was beginning to struggle more at work. I decided to stay off sick for the last few weeks of my contract, and then claim ESA, another scary thing to do, contemplating being unable to work any more. However, I have to say that I only occasionally miss being at work, and we are managing financially at the moment. 

         That's my story, you of course may well be able to carry on working. There was another nurse where I worked who was diagnosed with fibro before I was, and she is still there in a full time post.

           Your diagnosis does not mean you will be in a wheelchair; there are plenty of people on here who are not in wheelchairs. Personally I use a crutch outdoors and a mobility scooter in supermarkets.

             Don't despair! And it sounds like you have cats to cuddle as well. Good luck, gentle hugs. You can PM me if you want to. 😊  xx

4

Hi Mycats; I completely agree with what the others say.   I did have to give up work, but 4 years after symptoms started (and with BAD Osteo too).  I do have trouble with walking, but only if I go out for a long time (and more so when in air-conditioned shops etc), but have not had to use a Wheelchair, and have been diagnosed over 20 years. 

​I am also concerned re the high doseage of Gabapentin that you have been started on??  I also agree with the suggestion that you get a referral to a Rhuematologist, as these are the specialists trained in "pain control".

​I am pleased that you have found/have a GP who knows of and understands Fibro, though, as too many of us have had a problem even being understood by the Medical Field.  It sounds as though your GP willl give you all the help you need, and after being seen by a Rhuematologist , will follow through with your care/treatments.

​Keep asking questions on this forum, and you will also find answers to other "little  issues" that we have alll needed answers to.                     Good luck on your journey.                            Bron

5

Thank you for your responses. My gp did the tender point exam re fibromyalgia as well as my osteoarthritis. There's no referral for a rheumatologist yet. Or pain clinic but I think I'm going to call my gp in the morning and request being sent there. Last few days I've had plenty of pain and stress (work) to deal with. Had to start leaving notes at home for myself. Feel silly going in shops and not remembering why I'm there.

Upside - this Saturday I'm going out with a friend. I don't drink so won't mess with the tablets, she knows I've some 'issues' so told me "going out for a laugh and to cheer you up".

Because of what the gp said I've become very aware of how I cope with everyday things, cooking etc realised I've adapted as much as I can to function.

6

Morning - update. My tablets are now creating some concern, blurred and double vision, was scary heading for the bus to go to work. Persistently blinking and moving my head to see what am working on. When I need to get up and move around I have started to use a finger to check am not walking into things. Left a message at 10am for GP to ring me back about this (now 11.45). Also requested a referral to the pain clinic but was told the list is 32wks long, the appointment for an xray is deemed 'non-urgent' so can take at least 4-6 weeks for a letter.

Scared and frustrated that nothing is going to get done. Had to speak to my direct supervisior (unofficially) because he noticed my hand trick and persistent blinking. Told me to keep up to speed with things and as soon as anything confirmed then he will work with me so I can keep working.

Can I ask GP to refer me elsewhere for a pain clinic?

7

I'm glad that you are going out with friends tonight. I'm sure talking to your boss was added stress. But luckily, they are willing to be patient and work with you.

I had isolated myself when I first got sick. I didn't have energy to do or go anywhere. I have learned that it is important to try to keep those connections. It helps relieve some of the stress.

When my brain was in a fog I started setting up the calendar on my phone with everything. I have notifications going off for everything. Otherwise I would forget my head if it wasn't attached.

I hope you heard back from your GP about your meds. Everyone on this site is different so there isn't a one script fits all. Sometimes you can have a sensitivity to one med and not another or it could just be as simple as adjusting the dose.

Stay strong and have some fun tonight!

8

I was first told I had Spinal Ostioarthrtis with degeneration (not uncomon) in june of this year and would end up in a chair eventually (I need one now when the pain is bad enough unfortunatly). In october I went to my GP because the gabapentin she'd put me on wasn't doing anything for the pain and the side effects (went deaf in one ear) was intollerable to me. 

I demanded a referal to a rhumatolgist to get to the bottom of what was going on and find a treatment program that would work for me. I got my referal and saw the rhumatolgist the next day for a two hour appointment, near the end of the appointment he told me on top of the ostrioarthritis I also have Fibro. I was floored to say the least, that was so the last thing I thought I would be told. 

Like you I know other's with it who are in a chiar, but I also know those who are not - but all of them have employment issues in one form or another (most are now self emplyed because of the fibro). I was let go from work last year because I was in so much pain being on my feet from 7am until 5pm and in constant movement I just couldn't keep up and I didn't understand why (that was the start of my journey to find out what the world is going on with my body). 

I can walk for short periods of time, but 90% of the time I'm in constant pain and sitting I am 100% always in pain there is never not a time that I'm pain free unfortunatly. I've also gotten to the point that I do need a cane on my bad days just to get around and on my worst I need a chair (which is really annoying and hard to deal with since I've gone from running marathons to bearly being able to walk 10k without needing support in the span of a years time, plus the loss of muscle mass has freaked me out to no end). 

I hope you are able to get the help that you are seeking, but you are not alone in your drive to live a full active life and work. 

9

Hi Mycats. I was diagnosed with fibromyalgia ten years ago and more recently with osteoarthritis in my neck and shoulders. 

I have continued to work full time throughout. My employer has always been supportive,but has been more recently and with some adaptations I cope well. 

I think it's important that your employer understands fibromyalgia and puts support in place. Some days I can only do easy pieces of work due to the "fog" other days I am fine. 

Working from home some days if possible helps I find as there is no noise and no 1 hour commute. I'm very sensitive to noise that others in the office don't notice.  Working in a quieter part of the office helps. 

There is new hope for us sufferers. Three weeks ago I had an infusion of lidocaine I am virtually pain free for the first time in ten years and have completely stopped taking tramadol. I am managing on four paracetamol a day. 

I am sleeping better and have more enjoy. I can actually walk around shops without the crippling stabbing pain in my feet. 

i hope its not fibromyalgia in your case but if so don't give up hope. There is a much better understanding of the condition now. 

 

10

I just saw your post about the referral to the pain clinic. I saw a consultant within two weeks of my GP's referral and five weeks after that I had the lidocaine infusion. 

Perhaps it it depends on where you live but I believe you can asked to be referred to anywhere in the country. 

I took the first available appointment which happened to be a private hospital through the NHS. 

I would certainly discuss the waiting times with your Dr. I'm sure the timescale for being seen is under thirty two weeks that is a ludicrous amount of time to wait. 

Push for the rheumatology referral and hopefully they can get your referred to the pain claim nick much much sooner. 

 

11

Hi I have

Fibromyalgia

Brittle Asthma

Osteoporosis

Osteoarthritis - hips- knees- Shoulders

Cervical spondylitis

IBS

B12 defiency

Hypothyroidism

Reflux disorder

Had numerous hospital admissions for asthma over the 25 years I've had it, stomach operated ( Nissan Fundoplication and a repair)

Major op coming up jan to remove part of my collar bone, release the biceps tendon and remove the calcium from the tissue. I will lose the use of my dominant arm for 6-8 in a sling and it will take a year to, as the surgeon put it, to be able to do stuff but you'll never be fixed.

I have a total of 31 medications on my scripts.

I work full time, when I was first diagnosed with asthma 25 years ago ( it was an industrial injury) I was forced to give up work by Drs who would not sign me fit to return, I spent 7 years in the benefit system as a single mother,being nebuliser every 2 hours at first and something I struggled long and hard to get back to work.

I have been lucky and had good bosses who have been understanding and I have have crap ones who started going down the occupation health route if I was off for a while, I would look for a new job before it went too far down that route.

My current boss is great, I work from home on days when the Asthma is kicking off, my colleagues are used to me swearing under my breathe when my shoulder is hurting or my fibromyalgia is joining in on the party. I have a portable nebuliser in my car and another under my desk at work. My chest consultant despairs of me I'm sure!

There are days when to be honest I'd easily turn over ( if I could pain free!) and go back to sleep rather than have to exhaust myself at work, but I have a good job a good salary and comfortable standard of living, this I would not have if relying on benefits.

Plus I would go stir crazy at home!

Its not easy and some days I'm so tired, exhausted from lack of sleep for weeks and in pain that I could happily curl up in a ball and cry ...... but working works for me because it occupies my mind and distracts me. But you have to do what works for you.

X