Sick of being sick

[TKLOVE]

I can’t remember the last time I actually felt really well. It all started 15 yrs ago at age 37 I was diagnosed with RA. 5 yrs later my diagnosis was changed to As with inflammatory arthritis and they still haven’t found a combination of treatments that works well for both conditions. Then 2 yrs ago I was diagnosed with severe anxiety and depression. Then this year I’ve developed extremely high blood pressure and also boarder line diabetes, and on top of all of that every other month I seem to have some type of virus or infection. Oh and I’m also suffering from hair loss which no one seems to know what’s causing it. I’m 52 and I feel more like 82 most days. Not sure how much more I can take 😩

[sylvi]

Oh darling you could be explaining my life so yes I can understand where your coming from. It does take a while to get the regime right for your diseases sad to say. Your hair loss could be due to the drugs your taking. Some have said MTX causes, I don't know as I have never had that problem. So I am sending hugs your way.xxx

[Hidden]

Oh I hear you!!!! I’m the same age and started showing symptoms at 37 but misdiagnosed and only confirmed and started treatment 3 1/2 years ago. I only said to my husband the other day when am I going to feel ok not normal not great just ok. Life is a daily struggle with ever changing symptoms. I try not to drag my family down but I restrict what they do. I tell them to carry on with theirs lives and activities. I’m lucky they don’t won’t to leave me out. I couldn’t even leave my room on holiday🙄🥺I keep just hoping things will change I don’t want to be a burden.

Hate!!!!! This disease.

Sorry I’m ranting and not much help

[Mmrr]

I empathise with you. Although 'only' 3 years for me, it is still a long time to feel unwell.

After a big flare on holiday, in Scotland, no flights or excessive travel involved I'm feeling very p....d off.

I can't get a good combination of meds, so nothing else to do but move forward I guess and hope something useful emerges.

Stay strong.

[KittyJ]

I hear you 🤗 I too can’t remember the last time I actually felt well or got up in the morning because I wanted to not because I had to. This disease really grinds you down and you have depression to cope with too on top of it. I’m glad you feel able to post here and I hope that it is a help to you. Post as much as you like, let it all out. I try to put on a brave face but it’s so draining. We are here to support you until hopefully you get some help to get some relief. Please remember that you are not alone x 🤗

[Amy_Lee]

Oh, dear! Suffer for such a long time is really killing you, I can feel how you feel. In my case, I was in remission after 1 1/2 treatment, from what you guys have posted, I think I am one of the very lucky one to suffer for a very much shorter time though I still have to take the medicines and my joints are very much weaker after RA.

Do not give up, just work closely with your rheumy, I hope that you can find something working for you soon. God bless you!!

Amy

[Hidden]

You haven't mentioned any drugs you might be taking, Just to mention that if you are taking Leflunomide (Arava) this causes high blood pressure and for some, it can cause hair loss.

[Hidden]

Please don’t give up my love. Think how much your family love you & care for you.

I have not felt well since I was 10 years old when I started to get pain in my hand, fingers & lower back. I also developed a TMJ jaw. The doctor we had then was awful & said I was making it up because I didn’t want to go to school, although why that should be I don’t know as I always did well there & came near the top of the form.

In 2002. I had severe depression & that seemed to accelerate my conditions to the extent that I now have 29 conditions but at least doctors believe me now. I am 68 so I have been suffering with pain for nearly 60 years.

Just keep plodding on TKlove & remember that medical treatment & doctorS are much better than they used to be.

[Joya_banerjee1]

MTX can cause hair loss. Are you on this drug? It works well with RA but it has its side effects.Hope uou feel better soon

Joya

[AudreyJ]

I was referred to psychological medicine at Kings College Hospital when I lived in London. They were experienced in seeing people with life changing, incurable or terminal diseases. The counselling sessions I had there were invaluable. Can you get a similar referral? This disease is hard to cope with, and psychological support is a great help.

[_tracy_]

Oh I'm so sorry. Please please please look into Lyme Disease as a possible reason for your ailments. It destroys your immune system, invades your joints, brain, and nervous system, and much much more. I had it over 10 years until I figured it out. Caused low B12 (made my hair fall out, fatigue) which was the only test that turned up something was wrong in the multitude of tests various doctors ran. Lyme is very stealthy and evaded just about all of the standard tests my doctors ran. Meanwhile, I kept feeling sicker and sicker.

When I finally did suspect Lyme, I learned on the internet that I wasn't likely to get much help from traditional doctors. I already knew that, having been there already as I searched for answers for several years, including visits to Mayo and the Stanford Autonomic Disorders Clinic. I found the ILADS web site (a medical society for Lyme literate medical practitioners). There was a form I filled out on one of the web pages to obtain a list of some LLMDs (Lyme literate doctors) in my area. They emailed me a list several days later. I've been seeing one of them on that list for 2-1/2 years now and I am getting better. Another way to get LLMD names is to join social media support groups for Lyme (there are some in Facebook that are quite active) and ask for recommendations in your area. Unfortunately for those like me in the US, few LLMDs accept insurance though depending on your particular plan you may get partial reimbursement for office visits. I don't know about other countries.

By the time I saw my LLMD, I was pretty darn sick and was in a wheelchair. My LLMD ordered IGeneX tests (Armin Labs in Germany is recommended for those in Europe) and a CD57 test along with other blood tests. My IGeneX test for Lyme borrelia was highly positive and my CD57 was very low (typical for Lyme patients) which along with my symptoms confirmed I had Lyme.

Lyme is far more common than doctors realize and is epidemic in some areas, particularly the Northeast, Upper Midwest, and Northern California in the United States. It is also worldwide, there are many in my FB Lyme support groups who live in the UK, Germany, and Australia. Not everyone gets a bull's eye rash (I didn't) and the symptoms appear very slowly. There is a wide range of symptoms, because everyone is different. Also there are many co-infections that usually come along with Lyme, each that cause their own set of symptoms. So far I've been positive for 4 other types of infections in addition to Lyme. The ELISA test that doctors rely on has poor sensitivity and it is common to have false negatives (meaning the test says you don't have Lyme when you really do). I had that test twice, once given by my HMO and again at Mayo a year later and both were negative.